Patient Stories

These are stories told by patients and parents themselves. The purpose of these stories is to lend experiences to help others in similar circumstances and to provide education for others. We’ve organized the stories by age group, but some stories can appear in multiple places (mainly due to treatment length occasionally spanning multiple age groups).

Thank you to all of those who have shared their experiences and helped others through their experience with Hip Dysplasia!

32 y/o Woman (DDH, Cysts & Labrum Tear)

32 y/o Woman (DDH, Cysts & Labrum Tear)

i am 32.. 3 years ago i had my son which triggered my hip dysplashia, full term I had stabbing groin pain and could hardly... i am 32.. 3 years ago i had my son which triggered my hip dysplashia, full term I had stabbing groin pain and could hardly walk,  i was always  fit active and healthy. After giving birth I was ok, the pain slowly started to return, during exercise I felt a pain in my groin in time it got worse, over a few months it got extreme ,  a year or so  after they put me through physio which didn’t help but the pain continued and started to have limitations from my waist down, I then had an x-ray where they found dysplasia, at this point i could still walk and do normal day to day things. 4 months later I had a MRI where they found a cyst. But that wasn’t it, results took so long i seen a private surgeon, he seen the dysplasia and cysts inside and outside the bone as well as a labral tear.his input to my GP have now  refered to have the cysts drained but only from seeing a private surgeon. All tho I am still waiting I feel more positive.  if i didnt see this private surgeon i would still be on the waiting list for the young persons hip specialist where i am still awaiting an appointment. i am now almost completley immobile, i can limp a small distance, have 2 children, cant run , cant walk far , cant do any of the things i use to do with my kids , ive been signed off work for 8 weeks was suppose to start my nurse training next year. its ruining my life to be honest. Be so nice to hear other people s stories I’m 32 and have so many plans



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Abby Wheatley

Abby Wheatley

On the 20th of July 2018 I was told the heart-breaking news I had Hips Dysplasia and needed another operation. This was one of many...

On the 20th of July 2018 I was told the heart-breaking news I had Hips Dysplasia and needed another operation. This was one of many procedures i have had to undergo to try to rectify my hips. When i was told the diagnosis i was relieved as i finally knew what was causing me so much pain but also very devastated that this was my life now. There were days where i really struggled to even walk due to the amount of pain i was in. This made me feel very down and i was always in tears.

I was told to go away and have a think about this operation but I was informed this operation was a last resort for me as all the other alternatives had been exhausted. I was about to undergo a surgery that is very rare as only a handful of surgeons in Europe can perform this. The surgery is called the Peri-acetabular Osteotomy and this is only performed several times a year.

On the 14th January 2019 i was going into hospital to have the operation done to hopefully give me some relief from my hip pain. I was so scared that is was going to fail again but i had to put my trust in my surgeon. i cannot fault the hospital in anyway as they were amazing and so supportive as i have always experienced there. When i came to in recovery i was quite poorly and very tearful as i knew this was going to be a very long and challenging recovery.

Day by day step by step i am making good progress although its very slow. I am still having to use my crutches to help me walk and also using a wheelchair when i go out on a long day. I hate the fact i have to use this it as i hate people staring and judging. I have a long way to go still of this journey but i keep going because of the love and support from my family and friends. Also i have a blog that i am doing everyday which gives me something to work on whilst recovering and hopefully it will help others going through this. You can visit my blog here: click here.

Thank you for taking the time to read my brief story. i hope i can help many people.





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Addie

Addie

I discovered my passion for running in elementary school shortly after I joined a running club called Girls on the Run. I remember coming home...

I discovered my passion for running in elementary school shortly after I joined a running club called Girls on the Run. I remember coming home from my second practice and telling my mom that I loved to run! It was in middle school that I discovered I not only loved to run but I was actually a talented runner. At this point I was competitively in both track and cross country and I began to place higher up in our small races.

Going into high school, I really didn’t expect to do well. But, to my surprise in my very first high school race my freshman year I won first place. Caught up in the moment, I dismissed the small pain I felt in my hip. A few weeks later the pain started to become more of an issue – it was there but I didn’t want it to hold me back. The first doctor I saw explained that the there was a possibility that the cause of the pain, the popping and the clicking was hip dysplasia. Later, scans and several other doctors’ opinions confirmed it, I had hip dysplasia.

My parents were consumed with worries; no one in my family had hip dysplasia. I had none of the typical signs presented at birth. How could we have missed it? What did this mean? Was surgery the best option? How would this effect my running? How would this experience affect me and change me? Initially, I wasn’t worried as I had no clue what this meant. My lack of knowledge left me in denial for quite some time. When the idea of surgery was presented to me my initially reaction was no way. Again I dismissed it.

Little did I know, this wasn’t a choice. The problems and the pain that the dysplasia caused were only going to get much worse and running wouldn’t be an option. If I didn’t have these surgeries I would most likely need a double replacement by my late 20’s. Both of my hips were far more damaged than expected making these surgeries necessary. It began to hit me, all of the hard work I had put into running was about to be thrown away. For the longest time before the surgery I still couldn’t quite understand.

This was all going on while I was in the middle of my cross country season. I pushed the thought and worry of surgery aside and continued to run, knowing this could be both my first and last high school season and I made it to the state cross country meet, the only one in my school to do so and the first freshman from my school to qualify.

I had my first surgery 2 month later. I would soon start from square one all over again, as if back in elementary school. I remember going under anesthesia as my eyes flooded with tears and I was rolled away from my parents starting to sob how I didn’t want to go. When I woke, which only felt like a short time, my parents had been waiting over twelve hours. When the doctor opened me up, she discovered the dysplasia was a lot worse than expected.

I recall not being able to sit up initially and every time I attempted to stand I was overcome with nausea. I left the hospital after a few nights and after missing some school and spending many boring hours in my bed surrounded by weird pillows, I eventually began to heal. From wheel chair to crutches I eventually was able to walk and eventually run again.

That first run, 5 months after surgery wasn’t easy. I worked hard with physical therapy but I still broke down several times, laying in the grass not wanting to get up half way through my run, in the middle of a park. I wanted to quit, but who would I be than?

Running had always defined me and in my eyes, at the time, I had lost everything. Over the summer I worked as hard as I was allowed to and participated in an unbelievable amount of physical therapy. By the next coming cross country season, 8 months later, all that hard work, all that determination had paid off as I made state once again. In fact my regional time was several seconds better than the previous year and I placed several places higher.

I had lost myself after surgery for some time, as expected, but I’m slowly returning to my old self still today. Today, my second surgery is exactly two weeks away. I do fear losing myself once again and being left with more pain than before, although I’d say the first surgery was a success over all. I know this one will be hard. Recovery will take a lot of time, lots of patients, and a tremendous amount of hard work. But I also know I have the strength to get through it and that I CAN get back out there and run again with.





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Addison’s Story

Addison’s Story

Our journey with hip dysplasia started in 2010, one day after our daughter Addison was born. She was born with bi-lateral hip dislocation. She was...

Our journey with hip dysplasia started in 2010, one day after our daughter Addison was born. She was born with bi-lateral hip dislocation. She was put into a Pavlik Harness at 5 days old and wore it for 3 weeks. It corrected her left hip but the right was still a problem. She was put into a Hewson brace for 12 weeks and when that still didn’t work they scheduled a closed reduction.

We were devastated! As if having you first born baby in a brace wasn’t bad enough, we were now faced with having our sweet baby girl in a full body cast for 3 months!! What would we do?? How would we diaper, bath, feed, even go to the grocery store!! The day of her open reduction I was a mess! Addison was such a trooper though! She played in the pre-op room and was so happy (even without anything to eat.) All went well and we arrived home to start our journey.

As the days and weeks went by things got easier and pretty soon we were pro’s! I swear I am MUCH better at diapering a casted baby than an uncasted one! When cast removal day came, we were ecstatic!! How great it was to have our smooshy baby back!! Addie had to wear the hewson brace full time for a few more months and then back to nights only. We were optimistic with each Dr’s appointment and really hoped our journey was coming to a close. Unfortunately, her hips were not progressing and a Salter Osteotomy was scheduled when Addie was 15 months old. We were so scared! I couldn’t even think about them cutting my daughter’s hip bones and pinning them without getting sick to my stomach. This surgery was so much worse than anything we had been through! Addie spent 7 days in the hospital and was in such extreme pain! It broke my heart to see her so miserable. At to top it all off…..she contracted staph while in the hospital!! She lost 4 pounds and was very sick! After about 14 days she finally started to get back to “normal” and the task of entertaining a toddler in a cast began! Luckily we only had this cast for 5 weeks.

Addie is now 2 years post op and doing amazing! She started walking at 21 months and is now running, jumping, swimming, doing ballet, gymnastics and pretty much everything else any other 3 year old can do! Her hip is developing perfectly and she only sees the ortho once a year now. She is such an amazing little girl. I am inspired by her spirit everyday!

Through all of this, we have been amazed at the lack of information and consistent care in the medical community. Addie actually has CDH (congenital dysplasia of the hip) and her grandma had the exact same surgery in 1960. I’ll say it again, the same surgery 52 years later!!!!! How crazy is that?? There are so many children and adults that have this condition and the standards of care have not changed in over 60 years!!! With all the medical genius in this world, there has got to be a better way to help! I am committed to help One Hip World and the IHDI because I cannot bear to think of all the families that have to face this devastating journey!

What I have learned from this is that my baby girl is the strongest, most talented and amazing child! She suffered through all of this with humor, strength and tenacity! She got us through!
I am the proudest mama EVER!

Of course I have to mention the support I received from friends, family, Hip-baby.org and the Baby Center community chat groups….without you we would never have pulled through this ordeal! God is great and has blessed us in more ways than we can count! We have a beautiful healthy amazing little girl and he pulled us up from the ditches over and over again!

Thank you for listening to our story!
We hope that all your little ones have continued success and happiness through their DDH journeys!

Together we can…..Together we WILL!!!
-Kristy

For more on our journey visit: www.onehipblog.blogspot.com





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Adeline

Adeline

Meet Adeline, our strong, tough, happy daughter who has brought so much inspiration and joy to our family. Adeline is our first child, born in...

Meet Adeline, our strong, tough, happy daughter who has brought so much inspiration and joy to our family. Adeline is our first child, born in June of this year. She was frank breech for most of my pregnancy, so when she was born via C-Section the doctors pretty quickly picked up on the hip clicking on her right side. My husband and I had never heard of hip dysplasia, so the news was scary and saddening. At 9 days old Adeline was placed into the Pavlik Harness. That was an emotional day for us, but did not even seem to faze her – she is a tough cookie. We went in for an ultrasound at 3 weeks old and were surprised to find out that her right hip was partially dislocated, but the left worse as it was fully dislocated. After giving the harness a few more weeks, our doctor determined it was not making progress like it should.

At our last appointment, on Adeline’s 3-month birthday, we were pleased to find out that the right hip had corrected itself, but disappointed to hear the left was still fully dislocated. We were advised to schedule a closed reduction. She will be going in mid-November at 4.5 months for that procedure and we are hopeful that this will correct her left hip. We are preparing for life with the spica cast and the rhino brace following that operation, and are thankful for all of the resources IHDI offers and the support groups that are available.

Our journey with hip dysplasia is just getting started, but we are learning so much and determined to help raise awareness about this condition. It is amazing how resilient these children are and how they can cope with so much. I created a page for family and friends to share all about our adventure with Adeline in our lives and also about her hip dysplasia journey, too. We invite you to follow along with us as well at adventureswithadeline.com.

Thinking of all the other little ones going through this treatment and wishing only the best in your journeys.

Our DDH journey has inspired us to help raise awareness and support for the International Hip Dysplasia Institute. We ask you to join us on February 23rd, 2019 for the First Annual Sips for Hips Atlanta. Click here to learn more.





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Ali Zak

Ali Zak

Hi everyone! My name is Ali, I am 21 years old and senior year nursing student OU. I am so glad to have stumbled upon...

Hi everyone! My name is Ali, I am 21 years old and senior year nursing student OU. I am so glad to have stumbled upon a page like this as I have struggled with hip problems since birth.

I was born with a left dislocated hip and bilateral congenital retro-version hip dysplasia that was overlooked until the age of 1 when I began to start walking. The journey ahead was along one including 6 hip surgeries from the age of 1-19 years.

I have gotten my labrum operated on twice in my left hip and once in my left hip due to tears from overcompensation. I received my first PAO on my left hip the summer after my junior year of high school (2013). The surgery was a major success with little to any pain in my left hip following.

Although my right hip was severely less dysplastic than my left I due believe that the reliance on my right hip during my healing periods caused the degeneration of my right. After my upcoming graduation in May I will be receiving my 7th hip operation and 2nd PAO on my right hip. Although it upsets me to go through something like this I couldn’t imagine not because it not only made me the person I am today, but also the nurse. My hip dysplasia drove me towards the nursing field, and I couldn’t imagine my life without it.





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Allison

Allison

I have written out my story a few times for different purposes, and each time I change things around a bit, according to the purpose/audience....

I have written out my story a few times for different purposes, and each time I change things around a bit, according to the purpose/audience. I include details here that may not seem relevant for a site dedicated to hip dysplasia for a few reasons. One, I want to show that my story is not typical for someone with hip dysplasia. Two, I’m very curious to know if there is anyone else out there with similar problems. Many of my doctors have thought my problems are probably all related somehow, but no one knows how. I jokingly say that I should add “confusing doctors” to my list of hobbies. Three, I don’t feel like I can share my story fully without these details, and finally and most importantly, I want to give hope to those who may have a similar story to mine; to those who might feel hopeless at times, to show that you can overcome these things.

While I was not diagnosed with hip dysplasia from birth (though they did check) I had many other problems when I was born, or shortly thereafter. When I was a few weeks old, I stopped eating, and had to be tube fed for awhile. No one knows what caused this, as all the typical reasons were ruled out. I did finally start eating on my own again. I was also very far behind on my gross motor skills, and did not walk until I was about 2 ½. My fine motor skills were also behind. My parents were told that because I was so far behind physically, that I would likely have cognitive delays also. I do not. In elementary school, I had an IEP (Individualized Education Plan) for physical reasons, and I was also in the gifted education program. I graduated from high school with a 4.1 GPA, and graduated college summa cum laude.

When I was five, I had eye muscle surgery. About that same time, I was also placed on growth hormone. I did not have growth hormone deficiency, but they could find no reason for my short stature (I am 4’10”, rounded up, as an adult now) and I was part of a research group to determine if growth hormone therapy was effective for those not diagnosed with this deficiency.

When I was nine, I was diagnosed with bilateral hip dysplasia, and they discovered this while looking for something unrelated. I never had any pain. Though I did walk with an altered gait, they did not think this was due to the hip dysplasia, and my parents were told surgery would not fix my gait.

On January 5, 1993, I had bilateral Pemberton osteotomies. I had the privilege of being under the care of Dr. Perry Schoenecker, who is on the Medical Advisory Board for the International Hip Dysplasia Institute (as of October 2014), which is how I discovered this site. As my dad tells it, A doctor in Chicago told Dr. Schoenecker he would not be able to perform the surgery, but the surgery was a complete success.

For the next six weeks, I was in a spica cast. Mine went from my ankles, up both legs, to the bottom of my rib cage, and both legs were nearly straight, and in a V shape. After the initial four weeks, under general anesthesia, the top half of the cast was removed, and was then secured back on with ace bandages. I don’t remember the details, but I believe this was so physical therapy could begin. I was in a brace after that, though I don’t remember how long I was in the brace.

I remember being out of school the whole time, and home-bound education was arranged. I actually liked this part, because I was ahead academically and could complete the assignments at my own speed. When I returned to school. I used a wheelchair, though I could walk short distances with a walker. Eventually, I was walking without any assistive devices, but, as was predicted, I still walked with an altered gait. I also had “serial casting” for tight heel cords at some point after the hip surgery, and I was diagnosed with osteoporosis at age 18.

I must pause here a bit to say that I cannot fully share my story without sharing my Christian faith. Throughout my life, God has spoken to me through music, and He gave me a special song, “Cares Chorus” to help me get through my hip surgery. It was on a “Psalty the Singing Song Book” tape that I had been listening to for years, but it took on special meaning during my ordeal with the surgery. The song is based on I Peter 5:7, which is the verse I quoted at the beginning. I have seen God work in my life in so many ways.

While I wish I could say my hip story ends here, it does not. In January of 2010, I started having pain in my left hip. The pain started out minor, and I tried to ignore it. Due to my earlier problems, I wanted to pretend it wasn’t happening. It soon developed to the point where I couldn’t ignore it. On May 3, 2011, at age 27, I was diagnosed with severe arthritis of the left hip. I was told that this was not uncommon for people who had the surgery I did at age nine. However, due to my many medical problems, including the altered gait that was not fixed with the surgery or serial casing, no one knows for sure why I developed osteoarthritis so early. I do not want anyone thinking that this is in the future for their child (or them) due to my experience. I likely have an undiagnosed congenital condition that ties all of my various problems together, but no one knows for sure. I was always one or two criterion away from being officially diagnosed with any specific condition. I have joked that I could be on “Mystery Diagnosis,” save for two things. One, my problems are not dramatic enough, and two, I don’t have a diagnosis.

After I was diagnosed with severe osteoarthritis, the pain continued to increase. While I did not want to have hip replacement surgery as such a young age, I knew it would be in my future. I was told that “I’d know” when it was time for surgery. I was told the pain would get to be too bad. For me, though, the decision had more to do with the mental side of things, rather than physical pain. While I did have pain, and I did have cortisone injections, which helped, I was not constantly taking pain medications. For me, the decision came down to a few things. I was tired of feeling like a tortoise amongst the hares when I walked. I was tired of not trying on shoes in stores, because I was afraid I wouldn’t be able to tie my shoe again. I had to quit working in the church nursery. I was tired of thinking about the surgery constantly, knowing it was looming at some point in the future. It was time. Pain wise, I could have endured. But mentally, I knew it was time. Looking back now, I’m go glad I made the decision when I did.

On February 13, 2013, at age 29, I had left hip replacement surgery. Once again, I had privilege of being under the care of one of the members of the Medical Advisory Board for the International Hip Dysplasia Institute (as of October 2014), John Clohisy, MD. My recovery was nothing short of remarkable, with absolutely no setbacks. Yes, there were some difficult nights, but the pain was better almost instantly after surgery. After leaving the hospital, I took a non-narcotic pain medication for a couple of weeks, but it was mostly to help me fall asleep. Within 8 weeks, I was walking unassisted and cleared to return to work, and all precautions/limitations were dropped at 12 weeks. Though I was never one for walking, I had always had this dream of completing (not competing, exactly) in a 5K. The hip replacement surgery was the motivation I needed to actually start to train, and in April 2014, one year and two months after my surgery, I completed the Color Run 5K. I may have walked the entire thing, and it may have taken me over an hour, but I did it.

With the hip replacement surgery, God once again brought the song “Cares Chorus” to mind, and he also comforted me with Laura Story’s song “Blessings.” I cannot end this without going back to my faith in God, who has been my Rock throughout my life. God can bring about blessing through my difficult circumstances. I may never fully see those blessings here on earth, though God has allowed me to see a glimpse of some of those blessings. The same God who knew then, and knows now, all the intricate parts of my body, the same God who knows exactly why I had those various medical problems, is the Lord of my life. I don’t know what God has in store for me in the future but I do know one thing. My God is a great God. No matter what, I know He’s in control, and will give me the strength I need to step through life as He has each moment in my past. The same God who made the universe cares about me, and can bring blessings from trials.

***********

“Cares Chorus,” Kelly Willard, Copyright 1978, Maranatha Praise, Inc.

“Blessings,” Laura Story, Copyright 2011, New Spring, a division of Brentwood-Bensor Music Publishing





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Allison’s Story

Allison’s Story

My beautiful daughter Allison was “officially” diagnosed with CDH/DDH at 6 months of age. At birth she had a “mild” click with the left hip,...

My beautiful daughter Allison was “officially” diagnosed with CDH/DDH at 6 months of age. At birth she had a “mild” click with the left hip, but had an ultrasound and was evaluated by an [adult] orthopaedic surgeon who felt that no treatment was necessary. At her following well-child pediatric appointments no click was present and I breathed a sigh of relief. At her 6 month well-child visit to the pediatrician he heard the click again. 2 days later we had another consult with the original orthopaedic surgeon and had an x-ray and ultrasound done. The radiologist – who is a friend of ours – said that the x-ray showed dysplasia. The orthopaedic surgeon still felt it was too mild to require any treatment. I had had it at this point.

I called a pediatric orthopaedic surgeon with whom my husband was vaguely acquainted, and begged him to see us ASAP. He squeezed us in on a Friday before his vacation as a favor. He took one look at Allison’s films and said she needed immediate treatment which meant 3 to 4 months in a spica cast. I could not believe what I was hearing! He delayed his vacation by a day and scheduled her for a closed reduction that Monday. I had 2 days to adjust to the fact that my BEAUTIFUL, good tempered little cherub was going to be immobilized for 4 months! I cried non-stop… I too was very worried about her going under anesthesia, but my husband is an anesthesiologist so he was able to respond to my concerns and calm my fears.

She had the arthrogram/closed reduction that Monday – the procedure went very well. The cast covered both legs from her nipple level to the tips of her toes. We took her home that evening – she actually slept through the night. She was totally FINE with the cast.

She was checked a week later – the hip was stable (staying in place). She proceeded to have 2 more cast changes (for a total of 3 casts). Each was a little bit different in that the hole for defecation/urinitation was slightly varied in size. The last cast gave us back her feet – it was so nice to see them again.

She was in the cast 2 weeks shy of 4 months. Once the cast was removed she went to an abduction brace for 23 hours a day for 6 weeks. When we went for the follow-up visit after the 6 weeks her acetabular angles were measured and we had 18 on right (the unaffected side) and 19 on the left (affected side). So she was taken down to 16 to 18 hours a day in the brace.

We just had another follow-up last week and everything has remained the same so she is down to nights and naps now. So far our outcome has been really great – thanks to a lot of prayers and a GREAT doctor.





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Allison’s Story

Allison’s Story

Allison was born at 5lb 10 1/2 oz baby Girls. When my fince Damon and I first met our new baby girl we though she was...

Allison was born at 5lb 10 1/2 oz baby Girls. When my fince Damon and I first met our new baby girl we though she was healthy, nothing was wrong with her.

But as the night went on doctors came into the room and told us our baby has Hip Dysplasia in both hips. We knew very little about this and what it was. Little as my fince and I knew it would change our lives for ever. The doctor order Allison to be in the harness until her hips go back into place.

The next day the doctors told us that Allison has a heart murmur so she had to on a heart monitor. Later that day Damon’s family came up to visit Allison but the nurse told us they was moving her into the NICU. So now have this wonderful little girl in the NICU with Hip Dysplasia wearing a harness and have a heart monitor on her.

Like any other moms I wanted to stay with my baby but I couldn’t because I had 1year old at home missing her mom.
So I started to write out the “What IF’s” what if the harness doesn’t work? What if she won’t be able to walk? What if I wouldn’t be able to care for her? What if I couldn’t be the mother she needs me to be? What if she needs surgery? What if she dies while being under? That’s what I had to live with for a year and half of my baby’s life.

Now Allison is a 27 month old toddler. She is my light of my life. I couldn’t picture her out of my life. she didn’t started to walk until 24 months. She still sees a doctor for Hip Dysplasia in New Orleans. She goes every 6 mouths for a check up.





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Amber’s Story

Amber’s Story

Hello my name is Amber and I was first diagnosed with hip dysplasia at the age of 19, but the pain started long before I...

Hello my name is Amber and I was first diagnosed with hip dysplasia at the age of 19, but the pain started long before I was diagnosed. Growing up I played many sports such as basketball, soccer and softball. I never had any problems with hip pain until I was about 10 or 11 years old. When the pain first presented itself it was only occasional and seemed to flare up after a day of increased activity. I ignored it over the next few years and chalked it up to normal growing pains.

By the time I was 18 years old I started a waitressing job and noticed a large increase in the frequency and severity of the hip pain I was experiencing. The pain got so bad that it was hard to walk after a long shift, but when I would sit to rest it felt as though my hip was popping out of the socket. I couldn’t find any relief, so I finally decided to go to the doctor.

I went into my primary care doctor and she did an x-ray on both of my hips. She told me I had hip dysplasia and referred me to a orthopedist. I had an MRI prior to seeing the orthopedist. The orthopedist told me that the MRI showed that the labrum in my left hip was torn and my dysplasia on my left side was severe and would require surgery. On top of the hip dysplasia I also had stage 3 arthritis in both my hips and my lower back, the back arthritis was most likely caused by walking in an odd way to accommodate my hip pain for so many years.

After seeing a few other doctors over the next few months for second and third opinions, I made an appointment with a surgeon for a consultation. He told me that my left hip would require surgery in the near future because it was already so advanced. The only surgery that the surgeon recommend was a periacetebular hip osteotomy.

On July 11th 2011 I had the PAO on my left side. The surgery itself was about 6 hours long and I stayed in the hospital for 8 days. While in the hospital I had an epidural placed in my back for the first 4 days after my surgery, along with a catheter placed since you cant get out of bed. On the fourth day in the hospital they removed both of these along with the drainage tubes near the incision. By the time I left the hospital I was able to walk with my crutches and get in and out of bed with assistance. The surgery did leave a 9 inch scar, but would lighten up over time. At the 8 week post op date I was released to go back part time to work (I work at a medical office at this point) , to drive again, and to start physical therapy.

Over the next few years my left hip healed very nicely and I hardly experience any pain. But then came the time to talk about surgery on my right side. Both me and my doctor decided to proceed with a PAO on my right side so it didn’t advance as far as my left hip had.

I had my right surgery on march 6th 2014, and I’m currently 5 weeks post op. The experience was this time was about the same as the previous time although my surgeon switched to a new hospital. The recovery seems to be going well this time around also, but I will keep you all updated on my recovery.





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Amelia

Amelia

Hi! I’m Nicola, Amelia’s mummy and I am here to raise awareness of DDH and share our journey. Amelia was born at 18:50 on 14...

Hi! I’m Nicola, Amelia’s mummy and I am here to raise awareness of DDH and share our journey.

Amelia was born at 18:50 on 14 December 2016, a Wednesday to be precise. She was delivered by a planned C-Section due to breech presentation at 39 weeks. Amelia was a stubborn baby and appeared breech from 20 weeks – and didn’t move once.
Due to the breech presentation at birth the NHS procedure was to send Amelia for a hip ultrasound at 6 weeks old, at St George’s Hospital (Tooting). We attended and the outcome was ‘Shallow Hips” – a follow up appointment was made with an orthopaedic doctor. At this stage we wasn’t told much, it seemed as though we were shaded a bit from the truth, but the truth was about to be revealed.

At 8 weeks old we was told Amelia had Hip Dysplasia in both hips and she was placed into a Pavlik Harness (the plan was for 12 weeks to help her hips stabilise) – but this didn’t happen. Following a further ultrasound it showed that it wasn’t helping and she was taken out of the harness.  The orthopaedic dr. told us Amelia would need surgery!!!! As parents we freaked out, as again, we wasn’t told much. The procedure Amelia would be enduring was a Closed Reduction.

The Closed Reduction was performed in June 2017 alongside a tendonectomy, when Amelia was 6 months old. We had to be at hospital for 07:30am with a nill-by-mouth baby. At 10:30am we were told they were ready for us and led to the anaesthetic room. The most difficult part – watching your tiny daughter be put to sleep – and yes, I cried uncontrollably whilst holding her hand (nothing wrong with that!). We were told to come back in around 2 hours and to expect to see our baby in a Spica Cast. 2 hours went by and we went to collect our daughter, surprisingly she wasn’t in a cast. It was unsuccessful 😦 – the surgeon explained the surgery didn’t work and we would have to come back in January 2018 when Amelia was 1 year old for more surgery!!!

On 9th January 2018 we were back at the hospital at 07:30am with Amelia, this time awaiting an Open Reduction procedure. Yet again nill-by-mouth. The surgeon decided to operate on her left hip this time round and was told the operation would take around 4 hours. Again we watched our daughter be sent to sleep – it never gets any easier!! We returned after 4 hours to a very drowsy baby but this time finally in a Spica Cast – woohoo!! We were told by the surgeon following surgery that it was successful and went to plan as much as it could have *sigh of relief* – we spent 1 night in hospital and was allowed home the next day with a concoction of pain relief. We were to return Monday 14th for an X-Ray to check if the femur had stayed in the socket – which it had!

On 20th February we returned to the hospital for Amelia’s 2nd Open Reduction – which as above went exactly to plan. Amelia was put under a General Anaesthetic, her current spica cast taken off, washed and the operation was then carried out on the opposite side. We met with the surgeon following who explained again it went successfully. Again we stayed in 1 night and could go home the following day, we were instructed to return to the consultants clinic on the following Monday for an X-Ray to check the hip was still in the socket, and much to our relief it was.

Our next appointment is on 4th April 2018 where by Amelia will be put under a General Anaesthetic again but this time not for an operation – for CAST OFF!! We are so excited for this day, to see those legs again. For this will be the start of another part of our hippy journey with the possibility of being placed in a Rhino brace for night times. We look forward to our next stage.

For my own sanity and time out, I write a blog called The Journey of Hippy Amelia.

My aim is to raise awareness, share my growing knowledge around Developmental Dysplasia of the Hips – DDH and give you an insight into our Hippy Journey.

What we need to remember is every journey is different, every surgeon is different, every hospital is different, every child is different – although we are all aiming for the same end result – healthy hips – we need to ensure that we just remember that every child’s journey will never be the same (but may be very similar).

When Amelia’s hippy journey started in 2016, Amelia’s Daddy and I felt very much in the dark. We didn’t know what DDH was and felt very overwhelmed by all of the (or lack of) information we were given or not given.

Pavlik Harness, Hip Dysplasia, Ultrasound, X-Ray, Rhino Brace, Spica Cast, Open/Closed Reduction, Surgery and more – all of these scared us, mainly because we didn’t know what they all involved or what they meant for our daughter.

I’m hoping my blog will give you an in-depth insight into our ongoing journey, help you understand DDH more and provide comfort at one of the hardest of times in ours and our children’s lives.

https://hippyamelia.wordpress.com/




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Amy and Giuliana

Amy and Giuliana

“What are the chances that my unborn daughter will have hip dysplasia?” Was the question I posed to my orthopedist when I was 8 months...

“What are the chances that my unborn daughter will have hip dysplasia?” Was the question I posed to my orthopedist when I was 8 months pregnant in 2011. In my entire life’s journey with Congenital Hip Dysplasia (Developmental Dyspalsia of the Hip), I never thought to ask this question up until now.

Let me rewind to February 1982 when on a cold afternoon in Connecticut a baby girl was born. I was delivered via c-section because I was in the Frank Breech position, and as soon as I was out of the womb my incredible pediatrician did a hip check and immediately heard the familiar click of dysplastic hips. My parents, who just welcomed their first (and would become only) child into the world, had never heard of (Bilateral) Congenital Hip Dysplasia. They were instructed at that point to try placing their new bundle of joy in double diapers. If any of you are familiar with this technique, it was to basically build up padding between the legs to push them outward, in similar fashion to a brace. With this not being as successful as was desired, I was then placed into a Pavlik harness. No luck. Next up…traction at 7 weeks old. With traction not working, my orthopedist then placed me in a spica cast.

Unfortunately, none of these interventions proved to be successful. All signs were now pointing to surgery. For the next few months, I was in and out of surgery, having open and closed reductions performed. It is noted in the medical records from Dr. H that from unsuccessful attempts at both the open and closed reductions avascular necrosis was present. Avascular necrosis is when blood flow to the bone is compromised. This eventually led to more complications. In October 1982, my orthopedist walked into the waiting room of the hospital with a smile on his face. My mom thought he was coming out to tell them good news; just in time for her birthday. When he got to them he told my parents that his hands were tied. When asked by my mother if I would be able to walk, his response was, “She’ll never be a ballet dancer.”

As a medical professional, how can you say that to the parents of a 9 month old that have put their trust in you to mend your child’s condition? So heartless. At this point, my original orthopedist referred my parents to a

Children’s Hospital where I began seeing a new orthopedist. I like to refer to this doctor as the doctor who wrote the book on Hip Dysplasia. In December of that same year, he performed an open reduction and inter trochanteric osteotomy to the left hip. This was the first of many operations that the doc would perform. Over the next 15+ years he would become a saving grace to my parents, the staff like family, and the hospital like a second home.

Years passed, and I continued to see the doc on a regular basis to monitor my hip. In December 1986, 2 months before my 5th birthday I underwent a left transiliac leg lengthening and a left trochanteric transfer. In layman’s terms, I was going to be cut, spliced, repositioned, and held together with pins and wire. For the next 8 plus weeks, my tiny little body would be prone in a full body cast from my chest down. It’s how I celebrated my 5th birthday. The body cast was hinged like a clam shell which allowed my mom to check the wound and change me. On April 10, 1987, I was taken back to the operating room where the pin and wire from the greater trochanter were removed. Two days post op, I was able to walk with the assistance of a walker and was discharged back to CT in time for Easter.

I would continue to be seen on a 6 month to yearly basis until 1991/92 when another surgery was proposed. Remember when I mentioned avascular necrosis? From this, it caused the left hip to not grow at the same rate as the right, and I was now left with an almost 2 1/2 inch difference between the left and the right leg. Try being an awkward 4th/5th grader with glasses, braces on your teeth, curled bangs (it was the early 90s everyone did it!), and a 2 inch lift on the outside of your shoe. It wasn’t the most flattering time in my life, and I did go through the juvenile ribbing of classmates. My favorite was being called “Frankenstein”. I came back with some sarcastic retort, which thankfully halted anymore ridicule.

The options that the doc gave my parents were a) lengthen the left leg by placing rods with screws to be turned in order to stretch the bone. This would result in awful scaring and open wounds. There was also the possibility that the left hip was not strong enough to support this procedure. Or b) cut into both sides of the right knee, turn this little plug between the joints and slow down the growth of the leg. It would leave me shorter in height than anticipated, but would cause less stress and leave me with fewer scars. My left hip already resembled a road map, so my dear parents opted for the latter. The procedure was completed in June 1993, and was successful. I went on to have only approximately a 1/2 inch difference between the two legs, but that didn’t stop me from reaching for the stars. Did I go through a self-conscious time in my early teens with my scars? You better believe it, but all of what I went through made me a stronger woman. So strong in fact that I competed in the Miss Connecticut Scholarship pageant in my early twenties, swimsuit and all, and placed in the Top 10. God may have taken away my ability to be a ballet dancer, but he gave me a sense of humor, gift of song, and optimistic attitude.
My journey with hip dysplasia is not yet over. I’m 34 years old now and on the verge of a hip replacement. Just when, I’m not sure, but it is almost a daily struggle. My range of motion is non-existent, which makes doing daily things, like sitting crisscross on the floor to play with my daughter (her story coming up), extremely challenging. The simple things most people take for granted, I long for. I never learned to ride a bike because of my length discrepancy, and I can’t run because the hip just isn’t strong enough. I’m in the prime of my life and can’t enjoy it to the fullest. But such is life, you can’t have it all!

Now, to my daughter. The response I received from my orthopedist (my case was handed over to a new and fantastic doc, also at Children’s Hospital), told me that the chances of my daughter having CHD were more than 25%. Unfortunately due to a uterine abnormality she was breech, she was also the first born girl to a mother with a familial history…all the cards were stacked against her. On November 7th, 2011, 5 weeks ahead of schedule, I welcomed my beautiful daughter Giuliana Grace to the world via c-section. At birth no click was present, but she was to go for an ultra sound at 4 weeks. I asked for a referral from my orthopedist out of BCH for one in Connecticut and was sent to the head of pediatric orthopedics at Yale. Giuliana’s ultra sound showed that she too had Dysplasia. At the time of her birth, I wasn’t aware of the dangers of swaddling, and looking back at it now, I wonder if this also contributed to her CDH.

You can imagine how I felt when I got the news. My heart broke for her. I cried…a lot. I thought about my mother and my struggle and prayed that she didn’t have to endure all I did. Now being a mother myself, I thought about how strong my mom was and how she must have felt seeing her baby go through all of this. She is the strongest woman I have ever met, and I knew that I Giuliana needed me to be strong, too. Thankfully, Giuliana was off to a much better start; she had a specialist that works exclusively with children. Unlike my first orthopedist. She was first placed in a Pavlik harness for 23 hours a day in December 2011. Thankfully, this worked for the right hip. The left hip however, like her mother, was still impaired.

Her doctor then suggested we place her in a rhino brace. The rhino brace, I would come to learn, is what another doctor referred to as a “sloppy brace”, and often times proved to be more successful than a Pavlik harness. She was placed in the rhino around January/early February 2012. Seeing her in both of these braces was extremely difficult. The guilt I felt as her mother, feeling as if it were my fault that she was in this situation was a difficult pill to swallow. Regardless of the fact that my tiny baby was in these contraptions, she was always happy! She began in the rhino brace for 23 hours a day, just like the Pavlik. When we brought her back in approximately 4-6 weeks later, an ultrasound showed that her condition was improving. The doc said we could decrease her time to 16 hours a day; then she was transitioned to only needing to wear it at night. My husband and I both were ecstatic to hear this great news. She continued to be seen and in April 2012 she came out of the brace permanently. By the grace of God, and a fantastic team, my daughter’s hip dysplasia is not detected on X-ray.

Giuliana enters Kindergarten in the fall, and is doing amazing. We’ll go back on a bi-yearly basis at least until she is done growing. I am thankful. Thankful for how well my daughter’s hips are doing. Thankful for medical advances and improvements in healthcare. Thankful that I am where I am today because of specialists I saw at Children’s Hospital. But most of all, I’m thankful to get the opportunity to share my and my daughter’s story with all of you.





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Andrea

Andrea

I am a 20 year old female and was diagnosed with hip dysplasia almost two years ago. I have been active my whole life and...

I am a 20 year old female and was diagnosed with hip dysplasia almost two years ago. I have been active my whole life and am fortunate enough to play a high impact sport in college. Three days into my freshman year I was on a run and felt a painful pop in my right hip. I finished up the run but the pain got significantly worse as the day progressed.

I saw an athletic trainer who told me that I had injured my hip flexor and I had to sit out of sports for a while. When the pain didn’t get better and spread to my left hip, I had to get an MRI, which showed that surprisingly enough I had several tears and stretches on both hips. I went to a hip specialist so that he could tell me when I would be able to play again. I had no such luck. He told me that I was going to have to get a bilateral PAO sooner than later. The surgery was scheduled for late December and I got the right one done right after I finished up my classes.

I was on crutches for 2 months, then I got the left side done. I worked hard through the physical therapy with the goal in mind of playing again and 6 months after the left PAO I was. There was a lot of pain in the first few months and my hip kept on getting stuck, but I worked my way through it and played the entire season. The whole time however, I was in a significant amount of pain and my hip would catch randomly. I was also horribly out of shape. I would get pain in my lower back and shooting down my legs past my knees to about mid calf.

After the season was over, I decided that I was going to go all out and get my athleticism back or die trying. I worked my butt off all summer to increase my speed and endurance. I strained my right quad at the beginning and my right hamstring near the end. I would feel twinges all the time regardless of how well I stretched and warmed up. I still had the hip pain when I would run long distance, many sprints, or play and the back pain got worse and worse. I haven’t felt the shooting pain down to my outer calf as much though.

The only issue was that my endurance didn’t improve and my legs would give out just as easily as before. My speed didn’t improve, and the pain was just about the same as it was at the end of the season. Now I’m facing another season with no improvement to show from my hard work and a lot of pain to look forward to. Has anyone dealt with some similar issues, or had any problems returning to their sport after the operation? I really need to put this behind me and continue on with my life. It kills me knowing that I put my heart and soul into something and it just didn’t help at all. Does anyone have any advice for effective exercises to get back to the level I was before? Is this normal pain? Why is my muscle endurance not improving?





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Angela

Angela

I am a 37 year old female that was diagnosed with congenital hip dysplasia at 2 days old. I was coasted at 2 weeks old...

I am a 37 year old female that was diagnosed with congenital hip dysplasia at 2 days old. I was coasted at 2 weeks old for 6 months. My mom said my feet grew out the end of my cast. I was then in a brace for another six months. I learned to walk around a year and a half and my parents were told all would be fine…

My mom began to notice strange things about me. I always wore out the toe of my left shoe before the heal. My pants were always too long on the left side. And then she saw me from the back that my rear end was uneven. The pediatrician told her she was crazy! My parents finally found an orthopedic surgeon in Chicago. They took me and he knew right away there was a big problem. I had a four inch difference in the length of my femurs! I had suffered an a vascular necrosis of the femoral head.

I had two double upper femoral osteotomies, removal of plates and screws, exploratory hip arthroscopy, and eventually removal of my right femoral growth plate hoping my femurs would be even. I wound up with a 1inch difference and the dr said that was as good as it was gonna get. I was told no running, no jumping, no sports for the rest of my life. I was also told that I would have aches and pains but that was part of the territory.

I went on to live a relatively normal life. I became a pediatric ICU nurse, got married, had three kids. I always knew when it was gonna rain or snow. I was my families personal weather barometer… About six months ago the pain in my left hip got really bad. I could barely walk. No pain meds worked. On a good day it was like a tooth ache and on bad days it was like a raging fire in my hip. I lost range of motion. My kids had to help me with my shoes.

I finally went to a surgeon and after a lot of X-rays, an MRI, and a failed cortisone injection on April 9,2014 I had a total hip replacement with a cone implant. My hip was so abnormally shaped and distorted the surgery took 4 hours instead of one and a half. They lengthened my leg and so for the first time in my life my legs are even and my feet touch the floor at the same time when I sit. When I woke up in recovery I had NO pain in my hip!

I am in for a long recovery… Being off balance my whole life everything on my left side needs to be straightened and realigned. I know this implant won’t last forever, but I’m so excited to see where the new hip takes me.

Thank you for taking time to read my story!





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Angela

Angela

As an infant in the early 80’s I was diagnosed with club foot and my parents were told I would need to wear a metal...

As an infant in the early 80’s I was diagnosed with club foot and my parents were told I would need to wear a metal brace for my feet for the first year of my life. My grandmother tells me that when I had to wear this metal brace every night I would always cry myself to sleep.

It wasn’t until i was three years old and wanted ice skates for my birthday that my parents realized this was something else. I was unable to stand on my ice skates. I couldn’t do it, no matter how hard I tried I was not able to stay up. My parents to me back to the doctor and I met with surgeons who recommended that I get surgery to correct misdiagnosed hip dysplasia.

So I had the surgery at age 4. There was traction and body casts, scars, and lots of ice cream from the good nurses at Children’s hospital.

The last time I had a visit with a surgeon regarding my hip was when I was 10 years old. I have ongoing discomfort and pain and the surgeon told me there was nothing that can be done. So I stopped complaining and deal with the pain in silence.

I have a scar that stretches from my upper hip to my groin. And as an adult in my early 30’s I still suffer from discomfort and pain, it is increasingly getting worse and sometimes I have difficulty walking. My hip will give out like it is not strong enough to hold me up.

You should know that my hip has never stopped me from being active though. Through perseverance I played sports in elementary and high school, I have been in kick boxing, as well as tai-kwan-do as an adult, and I am still healthy and active to this day. I think one day I may have to go for further surgery to deal with my hip issues. Is there anyone else out there with a similar story?





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Ann Claire

Ann Claire

On February 26, 1998, I was born. That same day, my parents received word that I had hip dysplasia. In 1998, they did not have...

On February 26, 1998, I was born. That same day, my parents received word that I had hip dysplasia. In 1998, they did not have the medical research they have now. They were told I would never be able to walk– wheel chair bound or AT BEST, walk with a limp and cane.

I was an infant when it happened… I was born two weeks late to my petite mother. Hip Dysplasia had never been in our family, until me. I wore a brace around my entire body. I have the scars to prove it…

To this day, on February 26, every year, my grandmother sends pictures to the doctor who delivered me. She reminds them that I was once “bed ridden” but now am a walking legacy.

Legacy sounds like a strong word. I would say miracle (only by the grace of my Savoir)… I am now a D1 athlete, SEC Cheerleader for the Arkansas Razorbacks. I NOT ONLY am fully functioning… I’d say I’m HYPER functioning. I use my talent and skills to travel around the world.

I still struggle with hip pain every once and a while, but I am thankful and Praise Jesus for that. It is a reminder of where I came from, where I am, and where I am going.





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Annabelle

Annabelle

Annabelle Leigh was born August 9, 2017. Annabelle is our third child, she has two older brothers which keep her, and us, occupied. The pregnancy...

Annabelle Leigh was born August 9, 2017. Annabelle is our third child, she has two older brothers which keep her, and us, occupied. The pregnancy with Annabelle, as well as her birth, were normal and uncomplicated.

Our first notice of any concern was during her six month, routine well-visit with our Primary Care Physician. During the exam it was found that Annabelle would not put weight on her legs when we attempted to have her practice standing on her own power. The doctor recommended x-rays due to learning of a family history of hip dysplasia. Emily, Annabelle’s mother, had been born with hip dysplasia and treated with a brace immediately after birth, which helped prevent the need for surgery, although Emily continues to have residual hip problems to this day.

The hip x-rays for Annabelle confirmed her diagnoses of bilateral hip dysplasia. We decided to seek treatment at a hospital about 2 hours from our home. We made that decision because of recommendations from doctors in our area. Upon meeting with the pediatric orthopedist, we learned that because of Annabelle’s late diagnoses, surgery was our only option for treatment.

Surgery was scheduled but the surgical procedure was unknown prior to beginning the surgery. The treating orthopedist, was unable to proceed with a Closed Reduction option for surgery and decided to proceed with an Open Reduction procedure on the right hip. Following this procedure Annabelle was placed in a cast for two weeks until we returned for an Open Reduction procedure on the left hip.

Annabelle’s total time in a cast was approximately 9 weeks. This time was very trying to ourselves and our family who needed to learn the proper care that was required for Annabelle, as well as the cast.

After there was no longer a need for a cast, Annabelle was instructed to wear an Ilfeld Abduction Brace for full time the following two weeks. Currently, Annabelle wears the brace during naps and bedtime. Annabelle is now walking and continues to gain strength but will still require additional treatment and monitoring at the hospital.

Instead of being mad or upset , we have decided to put a positive spin on Annabelle’s diagnosis to educate and spread awareness to other families about hip dysplasia.  We were not aware how important the role of family history is with early detection of hip dysplasia and want to help other families not make the same mistake.

So with that we have decided to host a “Sips for Hips” event to raise awareness of hip dysplasia. Our event is called Sips for Hips Philly and will be held at Workhorse Brewing Company in King of Prussia, PA on July 27th from 12-3pm.

Visit: SipsforHipsPhilly.com to learn more.





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Annick

Annick

10 years ago I had never heard of Hip Dysplasia in humans…only in dogs. 10 years ago, I was a runner…a marathon runner. And then...

10 years ago I had never heard of Hip Dysplasia in humans…only in dogs.

10 years ago, I was a runner…a marathon runner.

And then in January 2009, I was diagnosed with severe bi-lateral hip dysplasia. I had 12 degress cover on my left side and 15 degrees cover on my right.  This meant that I was lucky enough to undergo bilateral Periacetabular Osteotomies(PAOs), LPAO on 20th May 2009 and RPAO on 28th October 2009. My RPAO was three days after I turned 47, and lucky me, I suffered a stress fracture (which was undiagnosed for 3 ½ months) which meant that my recovery was not as easy as with my LPAO.  But being a stubborn old mule, I did not let this thwart my determination to walk the London Marathon in April 2010. I started training at 8 weeks post-op having ditched my crutches the day before, and completed it, with my husband, in just over 7 hours!  Four weeks later, I managed to slip and cause a stress fracture to my Ischium on my left hip, which put me back on crutches for another 6 weeks.

Whilst this delayed my return to running, it did make me realise that whilst I had been okayed to run (three days prior to slipping!), I was actually not okay to run! I had huge muscle imbalances between my right and left leg, and I was weak generally overall. I wasn’t strong enough to run a few steps, let alone for an hour or more, and so, whilst on crutches for a third time in 12 months, I hatched a cunning plan!  This plan was to rehab the hell out of my legs, so with the help of a great sports therapist and a personal trainer, I set about starting from scratch, doing teeny weeny exercises which irritated the hell out of me, but my personal trainer warned me that if I were to do anything other than what he had instructed me to do, he would ban me from the gym…and he meant it!  So over a period of 9 months from August to April, I worked and I worked hard Four days a week. Week in, week out, until I felt strong enough to start running again – I was starting to go stir crazy in the gym! I ran my first 10k in the July of 2011. I was back, well, sort of…it was slow, but I was just so happy to be back out doing what made me happy. But there was still a lot of work to be done.

I continued going to the gym for the next 5 years, 4 x a week religiously.  During this time, I decided it was time to do something a little crazy. I remembered my surgeon’s words on the day that I met him. My first words to him were “Don’t tell me that I won’t be able to run again”.  “You will be able to run, just maybe no more marathons” was his reply…I remember thinking to myself he said “maybe”…he didn’t say definitely! And so with that memory in my head I signed up and ran my first post-op marathon on the island of Jersey in October 2013. And then the ball started rolling. Next up came my first trail marathon and my biggest challenge to date – Glencoe marathon in 2015.  There is a mile of climb on this marathon and the terrain is harsh, so it was a pretty big challenge for me, as just prior to signing up I had had to see my surgeon as I was having some issues with my hip flexors.  He warned me off doing hills! Oops!  So I was pretty stoked to complete it. My hips had been well and truly tested and came out singing! A massive grin factor! Then came 2017and I managed to secure a London Marathon place. I was finally fulfilling my dream of running the London Marathon again – and to say I was emotional is an understatement.  London Marathon holds a very special place in my heart and is one of the “have to’s” in my mind. London is hard though for me, as it is pretty flat, all road, and my hip muscles do not like it.  By 17 miles my hip flexors were screaming at me to stop…oh, no, not till that medal is in my hands!

I rather randomly followed up the London Marathon with The Dorchester Marathon, an inaugural marathon which was being held just 5 weeks later – not something that I would normally do, but I had never run an inaugural marathon before and went for it! My hips, yet again, did me proud!  This route, although on road, was undulating – a much better mix for me as this breaks up the position of the leg muscles when running.  So, no screaming hip flexors this time!  I also found that a run/walk/run mix worked well for the last 9 miles and my legs were pretty good the day after.

When I was diagnosed, my surgeon told me that it would be between 5 and 10 years before I would need a hip replacement…so I have, over the past 7 years, been back to see my surgeon every 2 years for a check-up.  So far, so good!  The last time I saw him, two years ago, he was really happy saying to keep doing whatever it was that I am doing as it’s all looking really good and that there was no difference between that days x-rays and the x-rays taken two years prior. Happy days! I don’t think he totally agrees with what I get up to as apparently he raises his eyebrows when my name is mentioned, lol, but I did warn him that I would test his surgery well and truly, and that he might rue the day that he ever met me, so he was warned!!! (Hi Johan! Just in case you read this.)

I should be going to see him about now, but I have malice aforethought going on…it will be my 10 year hippiversary next year and I want to celebrate my hips achievements.  So ULTRATHON here I come! I have entered one which is 37 miles long,  and is local to me, so I can train on the terrain – it is a mix of trail and a little bit of road.  It is in April, so pretty much exactly 10 years from my LPAO, and it is a distance that I have confidence of completing.  I would love to do a 50 miler but I need to make sure I can get to 37 first!  I then plan go see my surgeon and make sure the hips are still ok.

I think what I have learned from my detour down Hip Dysplasia Avenue, is that I am a lot stronger inside than I ever realized.  I am very much more determined than I ever realized, and I am very goal driven. Through my diagnosis I have gained friends that I would never have had, and I am involved in a community of the most supportive people I could ever wish to know. When I was a Torchbearer for the 2012 Olympics, I was asked to think of a motto that summed me up.  “Inspiration from others, determination from within”.  I am inspired by the likes of Nancy Muir, whose achievement of completing the Bear 100 just blew my mind!  She absolutely rocks! I am also inspired by those who are worse off than myself but who always have smiles on their faces and live life to the full.

Running is a gift, as even walking is not a given. I won’t wrap myself in cotton wool, but I do respect what my surgeon has achieved for me and I do my best to maintain healthy hips without stopping doing what I love.

To read about Annick Olympic Torch Experience: Click Here





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April’s Story

April’s Story

Wow! A site to inform others about hip dysplasia! And a place where they don’t ask, “like the dog?”! My mother was born with hip...

Wow! A site to inform others about hip dysplasia! And a place where they don’t ask, “like the dog?”!

My mother was born with hip dysplasia in 1939. In the 40s she spent 8 years on crutches due to her condition. It didn’t help. She grew up and as an adult suffered tremendous pain from the short leg and the deformed hip. Why she didn’t receive the help she needed, I don’t know. I wish she had. Especially after it was discovered that I, too, was born with it. Doctors missed the condition in me. When my mother had it, it was thought by her doctor (and maybe others as well) that the condition was prominent in boys, not girls. We now know that it is girls that tend to develop this condition. Anyway, I always walked “pigeon-toed” and my mother and grandmothers always swore I walked that way to get “new” shoes. As a teenager, my knee began to sublex and I began the first of many years of painful sublexes. I was petrified of needles, so when the fluid would gather after my knee would sublex, I rubbed the fluid out away from the knee to avoid it being drained. Eventually, my pain tolerance grew very high and I could literally walk through a sublex and keep going. I also had a short leg and my body compensated for my hip in many ways although I remained ignorant of my condition.

Things began to unravel when I was about 28. I was on travel at a training session for my job when my back muscles seized up and I couldn’t move. I was in immense pain for several days before I finally made it to a chiropractor who took x-rays and discovered a few things about me. She discovered the hip dysplasia (it didn’t really register at the time because my hip didn’t hurt and I didn’t fully understand), my spine was too straight and I had a lot of arthritis in my lower back from an injury I received as a teenager. And she noted my short leg. A lift in my shoe, several adjustments and treatments later, I was on my way again. Or so I thought.

One May I blew out my knee rounding second base in a softball game. The knee went out and it was a terrible one this time. I couldn’t walk this one off, not when the knee would sublex with just the slightest touch of my toe to the ground. No sir, I wasn’t getting out of this one. Not too long after this incident, a friend of mine referred me to the doctor who would become a savior to me.

My first visit was a memorable one. Dr P sent in a college intern to speak with me. He would learn really fast that I was a patient that he could use to enlighten and educate his interns who were becoming lax in their patient care and too confident in their suggestions for treatments. The intern suggested physical therapy to strengthen the muscle and I raised my hand to stop him. I said, please don’t waste my time by suggesting physical therapy. It won’t work. And as I said this, I picked up my kneecap and rolled it around and said, “Does this look like a problem that will be fixed by physical therapy? If that is all you are going to suggest, I might as well go home.”

The doctor came in at that moment and said, “She’s right.” And he held up the x-rays he had taken. I was scheduled for knee surgery. Because of the “way I was made” he would have to cut the muscle, tighten it and reattach it a little farther over so that it would keep my kneecap in place. He saw that the hip dysplasia was the cause and he was doing what he could to try and fix that. That first surgery was the first of 3 knee surgeries. The hip and short leg also took its toll on my back. I eventually had to have an IDET (Intra-discal Electro-Thermal) procedure. Then, in 2005, my right hip started to hurt me. First, it was an occasional stabbing pain. Then it started to collapse under me. I sucked up the pain because I was still fairly young. Too young, really for a hip replacement. I was in my late 30s by then. In 2008 I had a labral tear in my right hip. The doctor couldn’t fix the tear due to my condition so he cleaned it up the best he could to buy me some time.

In December 2009 I lost my fight against this condition when I was passed in the mall by a little ole lady with a walker and humpback. I burst into tears. I had lost all sense of self confidence. I constantly walked with a limp due to the pain and I had all but had to stop exercising because it hurt so badly to walk. It hurt to do anything. I wasn’t sleeping. I wasn’t doing much of anything. I had been doing Weightwatchers for years and had met my goal and became a lifetime member….until 2008 when the pain became so bad the weight started creeping on.

I finally was given my total hip replacement in February 2009. On my brother’s birthday. His birthday, my present! I knew that the moment I woke up, that the doctor had completed the surgery because I felt AMAZING! i felt like I was lying on a pop bottle but it was much better than the pain I had been feeling! I was thrilled! I had a new hip! The “cadillac” of titanium hips my doctor said. I felt elated and was walking on clouds!

Since the surgery, I have enjoyed all my activities pain free. My leg is now the same length as the other one and I love every minute of life with this new hip. I do have some pain in my left hip because it did so much work in compensating for my right hip, but it’s minimal and I treat it with care and do exercises with it to help it heal. And of course I have residual pain and occasional flare ups in my back due to the conditions that started before my hip was replaced but the best part is my hip dysplasia is gone and my hip feels great!

I want to do what I can to support those that have this condition or have a loved one that has this condition. There is just not enough awareness out there and we need more. It’s not just dogs that get this condition. A lot of people have this condition and don’t know it. I need to do something to help others and encourage those that need encouragement and support. I hope my story helps someone. Anyone.





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Ariah-Marie

Ariah-Marie

Our journey so far… At 9 months old Ariah-Marie seemed to have a limp she had only just started move round table and standing we...

Our journey so far…

At 9 months old Ariah-Marie seemed to have a limp she had only just started move round table and standing we took her to the g.p but they dismmised us and said it was because she has only just began walking.

After speaking to other professionals I.e health visitor etc. we went back to the g.p and was referred to one physician and then from there referred to another.
On the 19th June, we were about to be dismissed again until we mentioned the difference in leg length so we were sent for an x-ray and found out she had developmental dysplasia of the hip. We were told she would need an operation and another referral was made to the surgeon.

August 1st was the day of the operation. Ariah had an open reduction of her right hip and was on a morphine drip for a few days.
On August 3rd we were discharged from the hospital. Life in a cast was different for us all but we have adapted quickly and Ariah has been so brave.
1 week after being home we notice a yellow/green discharge spent Friday in the g.p and back at the hospital. Ariah has an infection due to the cast causing a sore she hasn’t been in pain or shown any sign of having any problems. They cut the back of the cast off and took swabs and bandaged her up. The antibiotics are working her infection is drying up nicely!
We went to see the surgeon and he put some more plaster where they had cut it and have booked an MRI scan.

Our journey is only at the beginning but we have all adapted faster than I expected.

To follow our journey please visit our Facebook page: https://www.facebook.com/HipDysplasiaJourney/





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Ashlea

Ashlea

This is the hip journey of my oldest daughter, Ashlea. I have 2 daughters, Ashlea and Ava, and they both have their own hip Journeys....

This is the hip journey of my oldest daughter, Ashlea. I have 2 daughters, Ashlea and Ava, and they both have their own hip Journeys. Ava’s is a completely different and quicker journey. But I will begin with Ashlea’s.
Ashlea was born 9 days overdue, her birth was everything a woman wished a birth would be. It was an amazing. She weighed in at 7lb4oz. She did have comlplications from bathing in and swallowing meconium. But she was a lucky baby girl who came home at 9 days old. She was perfect!
After a few months I began to notice Ashlea’s pant legs were shorter on her left side. I didn’t really take too much notice. She was a happy baby, even with reflux that had her projectile vomiting after every feed. She was a baby that didn’t roll and didn’t learn to crawl. By 13 months old Ashlea had learn to bottom scoot, she did this with her left leg straight out in front of her. It was now that I was getting worried that there was something wrong. I ended up making an appointment for her to see a pediatrician. He took one look at her and said she was fine. I didn’t agree. So much so, I booked in to see a different pediatrician. Again, she was perfect, apart from a slight leg length descrepancy. “Everyone has a longer leg!” I did agree, but not to the degree that Ashlea had. After talking to her father about her head shape (flat on one side from sleeping on her back) we decided to make another appointment with yet another pediatrician. Finally, when he put Ashlea’s legs together, he saw the length discrepancy.

He didn’t say much but sent us to see an orthopedic surgeon. Finally someone agreed with me! There was a length discrepancy that needed attention! We went to the orthopedic surgeon and he sent us straight down the hall for an X-ray. I will admit, I was not expecting to hear or see what we heard or saw when he placed Ashlea’s X-ray up on the lighted screen. There it was. My sweet girl, only a toddler, only 18 months old had a completely dislocated left hip! Over the last 18 months, Ashlea passed her maternal child health nurse appointments with flying colours. The times she went to gp’s I did get them to check her legs and it took 3 peds to realise something wasn’t right and send us to a specialist!
I didn’t know what to think, apart from happiness, that my mothers intuition had finally paid off! We were told Ashlea needed to have an open reduction. This was to happen 3 weeks after she was diagnosed. During these 3 weeks, Ashlea learnt to walk. She has a cute limp and fell a lot. But she accomplished something I thought she never would. She walked. Then 2 weeks later, she went in for her 1st of many surgeries.
I had no idea what to expect. Her surgeon wasn’t the best at informing parents what he was going to do their precious children. I knew she was going to come out in a spica cast. Spica cast! What was that? The internet was my best friend and worst nightmare at the same time.


Ashlea and I spent 4 nights in hospital, learning to care for Ashlea in her new appendage. The 1st time I saw her in recovery stuck in her plaster cast. I cried! At that time I didn’t know how we were going to get through this. I just found out I was expecting my 2nd child. I have touch and go pregnancies. I was told not to lift more than 10kg…..My Ashlea now in her spica cast weighed 20kg! I can’t not lift my daughter at the best of times, but now she relied on épée even more! So I just got on with it and crossed my fingers that my pregnancy would be ok.
Ashlea was such a good little girl. She adapted so quickly! She spent only 6 weeks in her spica (looking back now, I believe she should have been in it longer). It only took her 1 week to sleep through the night again. I started turning her every 3-4 hours during the night, but she could only sleep on her back. While on her tummy she would vomit (reflux) I spoke to her surgeon and they were happy with us to leave her on her back as long as she was happy and not uncomfortable.


On the day of her spica coming off (2nd surgery, even though no operation was needed) she was placed in a rhino brace. It was so good seeing her little legs again and giving her a bath! Her skin was really good. Only a few small patches of dry skin. It wasn’t long before Ashlea realised she could move around in her brace. She began bottom scooting again and after 3 months in the rhino, she learnt to walk, again. For the 2nd time. The brace didn’t keep her back. She went to the park, played with her counsins and was a happy toddler.
After 6 months in the rhino brace full time (23 hours a day) she graduated to part time. Ashlea now only had to wear her brace while asleep. With her new found freedom, she learned so much more. Climbing stairs, running, climbing onto the couch and lots lots more. By this stage, Ashlea became a big sister.
1 year after being placed in the rhino brace, Ashlea reached another milestone. No more brace! After 6 months in it full time then 6 months part time, she was now free from the brace.
Ashlea’s hips were going great. I never thought anything else would need to be done to her hips. That was until she was 4 years old (by this stage, Ashlea was now a patient at a different hospital. I transferred her here once her sister was found to have hip dysplasia as well) On one of her many regular visits, it was found that her hip was nearly dislocated again. So at 4, she went in for her 3rd surgery, her 1st federal osteotomy. This surgery was awful as was the recovery! We stayed 4 nights. Ashlea was wheelchair bound for 6 weeks. Once we were home and back to normal, Ashlea adapted well. Zipping around in her new wheels at home, kinder, childcare and while out and about. She leaned to accept the stares from other kids and adults alike. Even though it did hurt her. After 6 weeks Ashlea was given the ok to learn to walk again, for the 3rd time in her 4 short years.
1 year later Ashlea had the hardware removed and recovered quickly. She began to suffer pain on what seemed to be a daily basis. Her surgeon said it was to be expected with growing and the surgeries she had. It kept her from being included in sported etc. But she was ok with this.
The next year was a good year with no hiccups. She aced her specialist appointments and X-rays with flying colours. Then when Ashlea was 7, one of her usual 6 month X-rays revealed that her hip wasn’t in optimal position. Back into surgery again. For her 2nd femoral osteotomy. Again, 3 nights stay at the RCH and recovery was again horrid. Ashlea had built up and adversion to nurses. Whenever a nurse came in she believed they were there to hurt her. So as you could imagine, it wasn’t a pleasant 3 nights! But once we were home and again in her beloved wheelchair, she was fine. She spent longer in the wheelchair this time. 12 weeks. Over christmas and the Sumer break. But it wasn’t nearly as bad as it sounds. We still did family trips to the beach and made memories.
1 year later at the age of 8 it was time for the hardware to be removed. We were getting use to this now and knew what to expect. So after 2 hours in surgery and no word from her surgeon, I became worried. Then 3 hours came and went. What felt like forever was 4 hours and we finally saw her surgeon. I could tell by his face that surgery didn’t go as planned. Instead of the hardware being removed, Ashlea had yet another femoral osteotomy, her 3rd. This time the hardware was a lot bigger and stronger. So much so that she didn’t need a wheelchair for as long. She also upgraded to her 1st set of crutches. Ashlea was proud to say the least. She mastered the crutches better at the age of 8 than I did at the age of 16 when I was on them. This time her recovery from surgery was a lot easier! I’m not sure if it was because of her age and getting older and more understanding of everything. What ever it was, I was grateful for.
At the age of 9 and 9 months after her last surgery, the hardware was scheduled to be removed. This time it was only an over night stay. Ashlea did so well and was up and walking 3 hours after coming out of recovery! She did come out of hospital with her 2nd set of crutches. More for safety reasons at school and while out and about, while the bone healed. It was during this surgery that her surgeon decided that no matter what he did, Ashlea’s cartalidge wouldn’t form bone to form a sufficient ‘roof’ to keep her femoral head nice and tight where it should be. We were told that yet another surgery will need to be performed, her 1st pelvic osteotomy. But when, he does not know. If know, he needs to avoid her growth plates. Which means he will need to do more cuts in her pelvis. Resulting in a much more difficult and in-depth surgery and recovery. If we wait until the age of 13-15, her growth plates will be closed and surgery will be a little easier. But Ashlea is still in pain, so 4 months after her last surgery, her surgeon decided that an MRI was the best option to see why Ashlea was still in pain. And it revealed just that! Not only does Ashlea have a shallow acetabulum, but she now also has a severe impingement and torn labrum.


We are yet to hear where we will go from here. Her recent diagnosis was only discovered 3 weeks ago. And being over the holiday period etc, her next appointment isn’t until early February. Actually, on her 10th birthday.
The one thing Ashlea has taught me is, life goes on and that she is one tough cookie!





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Ashley

Ashley

My name is Ashley and I’m 29yrs old. My mother was told I had DDH (both hips) soon after my birth. Being a female and...

My name is Ashley and I’m 29yrs old. My mother was told I had DDH (both hips) soon after my birth. Being a female and first born to a very small young mother I was at high risk for this medical concern and was able to have the problem addressed very early. I was in a cast for the first months of my life followed by “double diapers” as Grandmother called it for the time up until I was potty trained. Doctors told my family I would most likely need assistance walking, but not to expect any normal development and to feel blessed if i walked at all. I began walking at 7months amazing the doctors who with hopeless attitudes told my mom she should feel lucky to have a child that walked and not to expect any sports or running of any kind in my future. I played basketball, volleyball, ran track, did power lifting, even took Karate…and did quite well if I can say so myself.It seemed that exercising and a healthy diet, along with early treatment changed my prospected outcome. The only problem is very important and the reason I’m sharing my story.

I managed to stay healthy until other medical problems I was unaware of began to pop up. I had put my “hip problem” out of my mind and have grown to deeply regret that decision. After breaking my hand and injuring my knee at 26, I had reached a point where I could not continue to lie to myself. I had been through a lot of medical problems before the knee injury that weakened my body and brought old problems back. I have an optic tumor, tied to a nerve disorder still undiagnosed and all my other issues stacking up. My sons birth at 25 was an awesome and special time for me so I tried to ignore the multiple issues that were triggered that day. I felt extreme pain in my legs during delivery but due to poor medical attention by my doctor who had told me I should expect a baby no larger then 7lbs. My pain was put off as just pressure, you cant feel anything I was told, you’re numb. 28Hrs later I was being rushed in for emergency c-section, kept awake just long enough to say hey am I suppose to feel that blade cutting me. I had given birth to a healthy 9lb 11oz baby boy. Because of my tumor and DDH things should have went very differently. Now I’m finding keeping up with my soon to be 5yr old is becoming more and more difficult. As other mothers might agree we tend to put ourselves last a lot…and we forget to take care of ourselves like we should. Along with being a mom I also am the wife to a husband battling mental illness. So I have filled my life with plenty of reasons to not pay attention or give to much thought to how often I was in pain or the fact that the limp in my walk had become an everyday thing. Now I am like most Americans unemployed and uninsured. I have no idea where to start, i havent been to the doctor since I broke my hand and when injured my knee…over three yrs ago and even then I just hand my hand operated on, no time for knee surgery or follow ups on optic tumor, I had to hurry home to change diapers and continue breastfeeding my new baby. I find myself so overwhelmed, in pain and no clue where to go.

My family feels blessed to have a roof over our heads and food to eat…what am I suppose to do? I want to enjoy the next adventure we approach but I am held back by the increasing pain and stress caused from my medical problems. Even though I have worked in the medical field for almost 10yrs, I have no where to turn. I had looked to my primary doctor who was also my boss, for help before the birth of my son, but he was so overwhelmed with the idea of having a sick pregnant women working for him, he did what all wonderful people who have less then 15 employees would do. He fired me, lied to unemployment, and then refused to release my medical records. I found myself hitting dead ends everywhere…What now ? I am so lost.
I hope that the start of story can be used as inspiration to parents with children who have DDH. Never believe in anything more then the impressive spirit and will of your child no matter what anyone says. To the adults never forget what you overcome it made your future possible. My biggest mistake is not taken better care of myself as an adult, and needing more help then I ever expected.
Before I finish Thank You to all the people who posted their stories. I feel a little less alone in world of pain….and thank YOU for taking the time to read my story, this is the first time I have shared my personal battles.





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Aubrey

Aubrey

Our baby girl, Aubrey was diagnosed with Left Hip Dysplasia at 5 months old. She was not breech. The pediatrician felt a “click” while rotating...

Our baby girl, Aubrey was diagnosed with Left Hip Dysplasia at 5 months old. She was not breech. The pediatrician felt a “click” while rotating her hips during an exam which lead to an x-ray that discovered a completely dislocated left hip. We were referred to Ortho and Aubrey was fitted with a Pavlik Harness that day. Her Ortho made no promises, being that my daughter was 5 months old and the Pavlik tends to have better results with younger babies.

To our Ortho’s surprise with 3 months in the Pavlik (full time), my daughter’s hip had made its way back into the socket and seemed to be remaining in place.
My daughter was then transitioned into a Rhino brace at night for what we thought would be 3 months. Unfortunately my daughters hip socket did not seem to be cooperating, as it was remaining in place but the socket did not seem to be deepening. Her 3 months in the Rhino turned into 6 months, and now her 6 months has turned into a wait and see.

Aubrey is now 15 months old and in her Rhino brace during naps and sleep. The plan at her last visit was to give it 3 more months and if no improvement we would be discussing surgery to deepen the socket. Her Ortho believes it would be in her best interest to surgically correct the hip socket to prevent future hip complications, should the Rhino and natural growth not correct it.


Aubrey is a happy little cutie pie. She stood, crawled, and started walking within normal timing for her age. The Rhino does not bother her at night and she is even starting to hand it to us/lift her legs up for us to put it on before “night night”. The transitions were certainly difficult but were always short lived. She cried for several long days after being fitted for her Pavlik, and had a hard few nights adjusting to the Rhino. Nothing a little time and TLC could not get her though. Hope this story can help someone in a similar situation.





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Autumn’s Story

Autumn’s Story

Autumn is 20 months old. We have just found out she has Bilateral Congenital Hip Dysplasia. Her left hip is partially dislocated & her right...

Autumn is 20 months old. We have just found out she has Bilateral Congenital Hip Dysplasia. Her left hip is partially dislocated & her right is completely dislocated. The feeling is overwhelming. As an infant learning to crawl she sometimes favored her right leg. Late to start walking (16 months) she also favored the right leg & even limped.

As first time parents we were concerned but every doctor visit they seem to think she was just a little behind schedule but perfectly fine. It wasn’t until other people started showing concern we made an appointment strictly to check her limping walk that we had assumed her way of learning her balance. Within 5 minutes her doctor felt there was an issue & recommended x-rays. 2 days later she was diagnosed & scheduled for surgery. We’ve not yet begun our journey, surgery is schedule for June. I will update as we move forward.





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Bailey-Ann’s Story

Bailey-Ann’s Story

Well, hello there, my name is Bailey-Ann, and I would like to share my story with hip dysplasia. When I was about nine months old,...

Well, hello there, my name is Bailey-Ann, and I would like to share my story with hip dysplasia. When I was about nine months old, I was adopted from China. While I was the Chinese orphanage, I was bundled up so tightly under an overabundance of layers, that I could not move a muscle. As I grew up, my parents and family knew that there was something unusual with my gait combined with certain physical limitations, which only deteriorated as time passed, which meant numerous visits to many different doctors. Growing up, as a result of the hip dysplasia, I was unable to sit “like a lady.” Not having the ability to sit like the rest of the girls, I developed feelings of abnormalities, and soon after, I started to question my femininity.

During my younger years, I was never picked on for my hip dysplasia. I was just another kid in the classroom. Unfortunately, as I grew up, as puberty started, the hip dysplasia become worse and more noticeable. As a result, I remember many, many years of taunting, teasing, bullying, abuse as a result of the hip dysplasia, my abnormal gate, my limping, and the fact that I could not sit like a lady, the fact that I had early onset arthritis and other issues that shall not be mentioned. As a result of the incessant abuse, I had major depression, self-harm, issues with body dysmorphic disorder for a long time—due to my various health issues and the side effects of the treatments, and even suicidal intentions and actions. I kept my parents in the dark for quite some time about everything to shield them, but they found out. After they found out, I got treatment.

Moreover, just when I thought my life was back on track and everything would be okay; however, in my junior year, something else happened, I got sick (not from the abuse). It was apparent that I had physical limitations and abnormalities; however, there was still no definitive diagnosis. Unfortunately, I was in an immense amount of pain. The pain I felt was like nothing I have ever felt before. spent my junior and senior years of high school, juggling academics with hospital visits, procedures, and tests to find a diagnosis and a treatment plan for my orthopedic and other physical health issues. Finally, after all of the years of seeing doctor after doctor after doctor and undergoing tests after test and test, doctors were able to give me a definitive diagnosis and treatment plan. I have DDH (developmental dysplasia of the hip). To treat this condition, doctors said that I would have to undergo not one, but two corrective surgeries. The summer before I came to college, I had a femoral de-rotational osteotomy. To successfully correct my physical deformity, the orthopedic surgeon had to break my leg in three places and nail a rod to hold permanently hold my femur and to my hip and place screws to correct the deformities.

I received treatment to correct my abnormal gait, to gain better range of motion, and to fix my legs and hips so that I can walk normally. Before my freshman year of college, I decided to have my right hip operated on for the right side was worse than the left and the left side next. During my stay at Children’s Hospital, my parents noticed immense, positive changes. While in the hospital, I was able to close my legs for the first time. As of now, I am recovering from both surgeries, I got contacts, and I made other aesthetic modifications to basically make myself over and to slowly boost my self-esteem. I am currently able to walk straight for the first time in my life. Furthermore, I am currently a premedical student at Austin Peay State University.





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Bekkah

Bekkah

I’m Bekkah and I’m 21 from Scotland. From a fairly young age I’ve always walked with a swagger and sat with my legs in a...

I’m Bekkah and I’m 21 from Scotland. From a fairly young age I’ve always walked with a swagger and sat with my legs in a ‘w’ position. No indicators at birth that anything may be wrong with my hips and that continued until I was 16. I was a very active young person, I Thai boxed at a competitive level, played football and danced as part of my theatre school, there is suggestion that the amount of activity I took part in helped to strengthen the muscles outside of my hip joint and keeping symptoms are bay. At around 15, I took time out of all extra curricular activities to study for prelims and exams and soon after would rather have spent Saturday nights with my friends than in the gym or studio. I fell away from everything.

A few months later and I start having severe discomfort and pain in my left hip, I stop taking part in PE, and dread my waitressing shifts due to pain. I start to fall down the stairs and experience a dislocating sensation. I go to see my GP who tells me it is growing pains and not to worry. I persevere with my hip for nearly another year with a few nasty ‘dislocating’ episodes and tumbles down the stairs. During my 6th year in high school I had one of these ‘dislocating’ episodes after losing my footing on a concrete stair well in school, my mum came and got me to take me to the hospital.

After several X-rays, the doctors couldn’t believe my mum when she explained I hadn’t had any previous issues with my hips as a baby. I was referred to a specialist and told that surgery may be the only option.

I was referred to the new University Hospital where I met the fantastic surgeon that has seen me through tears and tantrums. He made a very basic explanation to me about what bilateral hip dysplasia was and how severely affected my hips were. He told me the pros and cons of surgery and sent me for a million X-rays. He then told my mum and I that he would have been apprehensive to do the surgery as my dysplasia was the worst he had seen.

June 2015 at 19 years old I went in to have my left hip corrected with a Gantz Osteomy, my surgeon snapped my hip in 4 different places and held it together with 4 screws. I came out of surgery 6 and a half hours later having had an epidural with a plethora of problems. My operated leg was mobile (it definitely should not have been) and my right leg was dead to the world.

I had to remain in intensive care until my epidural could be removed. After being wheeled to the ward where needles to say I was the youngest patient by miles, my recovery soon began. It was a long and winding road, the bruising I had was horrific and the nerve damage I had post op, I never had any feeling return. I hated my crutches and how immobile and dependent I was on other people made me miserable and grouchy.

The race was on to be better and off both crutches for the new uni semester starting in September. 11 weeks of hydro and 9 of physio helped along the way.

Still have 4 screws in my left hip and going in for same procedure on my right in June 2017, but I’m wondering if the procedure helped. I still feel much discomfort in the left hip and due to using my right as a weight baring leg, it is much worse now than it ever was…

Bionic hips please!!





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Bernadette

Bernadette

Bernadette had a ‘clunk’ in her hip identified just two days after she was born. We were assured it would probably be fine but she...

Bernadette had a ‘clunk’ in her hip identified just two days after she was born. We were assured it would probably be fine but she was going to be referred for a scan on her hips to check. Our first daughter had the hip scan on account of her being breach and she was fine so we thought we knew what was coming.
We took her for her scan when she was one week old and there she was diagnosed with bilateral hip dysplasia. Her right hip was significantly worse than the left. It was definitely a shock despite it being the reason we needed the appointment in the first place. We were still very much in the beautiful, newborn bubble and this news just didn’t belong there.
The next week she was fitted with a Pavlik Harness. This was quite a shocking image having this tiny baby strapped up. It seemed to completely cover her tiny body. I just cried a lot as she was being fitted with it. I’d never seen anything like it before. She could still move in it which I wasn’t expecting and it didn’t affect her in any way. She was still a very happy baby. Nappy changes were difficult but we got used to them and we soon got over the fact we couldn’t bathe her or take her swimming and tried to keep as positive as possible.
She went back and forth to hospital for scans and consultations weekly, each just extending the use of the Pavlik Harness. Her left hip resolved itself and her right hip appeared to be improving just very slowly. However, when she reached ten weeks old, and she had been in the harness for eight of those weeks, our consultant discontinued it because it had been unsuccessful. Her hip was in a ‘subluxed position’ and the cartilage in her joint was now in the way and was stopping her making a full recovery.
We are now waiting for Bernadette to undergo closed reduction surgery and be put in a hip spica cast. I still don’t know exactly what any of this means. I have a vague idea but when I’m in the moment or the second I’m asked if I have any questions my mind draws a blank so we are very much taking it as it comes. It’s such a confusing thing to go through. It’s scary. As a parent, you never want your child to have to go through anything like this and it’s truly heartbreaking when there’s nothing I can do to fix it and there was nothing I could have done to prevent it either.
In the meantime she has no harness so we can bath her and dress her and take her swimming and just enjoy her.
We are waiting for her appointment dates to come through so I feel like we are stuck in limbo with it all at the minute. I keep clinging to the fact that one day she’ll have done it and will be back to full health and while it’s such a bit thing at the minute eventually it will have only lasted such a short time.





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Bernardo’s Story

Bernardo’s Story

Bernardo’s Story: successful treatment with Pavlik harness in baby boy with bilateral hip dislocation. Bernardo is my third child, his two older brothers were born...

Bernardo’s Story: successful treatment with Pavlik harness in baby boy with bilateral hip dislocation.

Bernardo is my third child, his two older brothers were born with healthy hips. Bernardo was in a breach position entire pregnancy and was delivered by C-section. I (his mom) was also a breach baby and had dislocated hip at birth, followed by a persistent dysplasia which required long treatment with braces, closed reduction and casting.
Considering my history and him being breach, I anticipated that Bernardo would have hip issues, although, of course, I was hoping he would not. As soon as he was delivered, his pediatrician knew that his hips were dislocated. Bernardo was referred to a pediatric orthopedist who did a physical examination of his hips, and at 6 days of age he was put in a Pavlik harness. The harness had to be worn 24 hours for a minimum of 6 weeks. Of course it was heartbreaking to see my baby boy wearing such an awkward device that restricted him from moving his legs. It also restricted me from holding him in certain positions but it did not restrict me from hugging and cuddling him. All my family members and I knew how important it was for Bernardo’s hips to continue wearing the harness at all times. We all learned to cope with the harness sooner and better than I thought we would. I learned to breastfeed him while hugging him in an upright position, laying him on my lap prompted with pillows or side laying position while only his upper body and head were turned towards me. My husband and I learned to change his diapers very quickly. As our baby grew, we learned to adjust the chest and shoulder straps of the harness ourselves. Leg straps were adjusted by an orthopedic nurse, and ankle straps were never touched. Bernardo did not seem to be bothered by the harness at all.

Bernardo was born in May, so he wore his harness during summer time. Because it was so hot the skin under his shoulder straps became irritated. I gently wiped it with moist cloth and dried thoroughly once or twice a day. There was no fabric soft enough to place under the straps, so I used baby wipes. I dried them completely in a drier and cut them into appropriate size. I changed them almost every hour and through away the used ones because they were so inexpensive. This technique really helped. Dry wipes absorbed moisture very well and Bernardo’s skin was healed completely by the next day. After that I continued using the dry wipes to prevent further skin irritation.

Bernardo’s hips became stable (in the sockets) after one week of wearing the harness, so it was apparent that the harness was an effective treatment for him. After wearing the harness for six weeks Bernardo had an ultrasound. The procedure did not take long, was not invasive and Bernardo was quite comfortable the whole time. He was laying on his side while the technologist scanned the opposite side and he continued wearing the harness during the procedure. Alpha angles of his hips were 65 degrees for the right and 62 degrees for the left. I do not recall values for beta angles, but they were normal. The very next day I was given instructions to remove Bernardo’s harness. His doctor did not think that weaning was required, but I removed the harness gradually over several hours. At first I loosened the straps a little, then a little more until the harness was very loose, and then I removed it completely. His legs had dents in them where ankle straps were, it took over a month for them to disappear. Bernardo seemed just as comfortable out of the harness as he did in it. I cuddled him a lot and carried him in a kangaroo wrap. I made sure that his legs were in a position similar to how they were when he was in a harness.

At four months of age Bernardo had his x-ray. Acetabular indexes were 23 degrees on the right hip and 26 degrees on the left. Ossification centres were not yet noted. The orthopedist said that it was within the norm. Bernardo did not require any treatment, only a follow up in four months to ensure his hips did not become dysplastic. I did not restrict any activities of my baby, but I continued keeping his legs abducted whenever possible. I carried him on my hip, never swaddled his legs, I even purchased the widest stroller and car seat I could find in order to keep his hips in a “froggy” position.

At eight months of age Bernardo had another x-ray. The doctor did not take measurements for acetabular index, he determined that his hips were not dysplastic only by looking at the x-ray. He also made sure that Shenton’s line was continuous. There was still no ossification centres noted. The orthopedist said it was still within a normal variation because they usually form between four and eight months of age. I was worried about this, though, because this was one of the problems I had with my hips as a child. In fact, it took a very long time before my cartilage turned into bones. I was also afraid that Bernardo could have developed avascular necrosis, but I knew longer monitoring was required to rule out that possibility.

Bernardo’s next x-ray was in four months, two days before he turned one year old. After looking on his x-ray his doctor said that his hips were developing very well. Acetabular indexes were within normal values (unfortunately I did not ask what they were) and I was happy to see bilateral symmetrical circles where ossification was taking place. Our next follow up is scheduled in one year, when Bernardo turns two.
Bernardo is a very active little boy, crawling, furniture walking and always trying to catch up to his older brothers. His hip development will be monitored until his adolescence. My family and I are very fortunate and very grateful to receive care from such knowledgeable and dedicated team of healthcare professionals. They provided appropriate timely treatment for Bernardo, without their expertise my baby’s outcome could have been very different.

As a mom, I would like to share with other parents some ideas that I have learned from this experience. Draw your strength from your love to your baby. I felt better when I cuddled my son, massaged his feet, his back and legs around the harness. Talk to others who you trust. I talked to my family members, my neighbour and many parents on playgrounds. I even met some moms whose babies were in similar situations. After talking about the issue it seemed less threatening, and, instead of focusing on the disorder I started to focus on how to make things more comfortable for my baby and the rest of my family. That was something I could do, so it empowered me and made me feel a lot happier. Another useful tip is to gather information. Ask your healthcare professionals questions, tell them your concerns, get second opinion when you decide it is appropriate. Ask where you can get answers to your questions when your doctor is not available. Doctors are very busy, and most of my questions came up after the appointments. A couple of days after an appointment I would formulate my most important questions and phone the orthopedic nurse, she was wonderful answering my questions. After that I felt calm instead of feeling worried and uncertain.
I hope sharing my son’s experience will help some parents feel more optimistic about their babies’ prognosis. Early treatment with Pavlik harness seems to have helped my baby’s healthy hip development. May all our children be blessed with health and happiness!





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Brody’s Story

Brody’s Story

As any proud mother would say, the day my son was born was the happiest day of my life, it truly was. The day after...

As any proud mother would say, the day my son was born was the happiest day of my life, it truly was. The day after my son was born, not the greatest day. The day after he was born I was told by the hospital doctor that Brody had hip dysplasia. This was incredibly concerning, especially since I had only heard of this condition in dogs. I was assured that it was “no big deal” and could be treated quite easily. Everyone was so lax about the situation, I put it out of my head, thinking it really was “no big deal.” I knew we needed to make an appointment to see an orthopedic doctor, but was told we needed to see a pediatrician first.

Our pediatrician appointment went well, she assured us hip dysplasia is very common and easily treated, nothing to worry about. She also told us that Brody’s case was very minor, she could barely feel a slight click, but sent him to get x-rays to be safe. She referred us to the only pediatric orthopedic practice in our area and informed us it might be a few weeks before he could be seen. I knew the next day that his case was not minor or worry-free when his pediatrician called me personally to tell me to call the orthopedic surgeon immediately and let the receptionist know we needed to be seen within the next week. Suddenly it felt like everyone with any knowledge had lied to me or missed something incredibly important. I decided to give everyone the benefit of the doubt and not worry. That was until we went to our first pediatric orthopedic appointment (what a mouthful, right?).

Looking back, the appointment went very well. We met an incredibly competent doctor who has seen thousands of hip dysplasia cases and we had a plan for correcting the issue. At the time, I was a wreck. I felt blindsided, I was angry, I was terrified. I held my two month old son and cried thinking about all of the possibilities. But I was also hopeful. We put the Pavlik harness on him that day and wore it for an entire week without taking it off. At the time, that seemed like a daunting task. Especially because three hours after strapping him into a full body contraption with strict orders not to take it off…he had one of those two month old baby poop explosions that no diaper in the world is capable of containing. That’s right, he pooped right through his onesie, in a parking lot, wearing the harness. It is comical now, I sent my husband in the store to borrow scissors and we cut that onesie right off his tiny little body. For another six days he wore a half onesie and a harness, good thing it was August in Texas-that was all he needed!

After the first week in the harness we took a break because it seemed that Brody had a pinched nerve. We then were reduced to only wearing the harness at night. This went on for a few more weeks. Until we went in for an ultrasound to look at the progress and determine the next step. We were devastated to find out the harness was not effective. Our doctor informed us that keeping him in the harness might do more harm than good, surgery was really our only option. Everything was a blur, I was blind sighted again- I had really thought his hips were making progress! The doctor wanted to schedule surgery right away but we really felt like we needed time. Brody was three months old at this point, and the doctor wanted to schedule surgery when he was four months old. We decided we needed a second opinion, not because we did not trust our doctor, but because we felt we owed it to ourselves and to Brody to make sure we were not rushing into surgery without covering all of our bases.

In the end we made the decision to go into a closed reduction surgery when Brody was six months old. Being a new parent this was the hardest decision I had ever made. Every single surgery was difficult for me. Especially the first one. It turned out a closed reduction was not possible for one of his hips. His right side was an open reduction and his left, closed. We stayed in the hospital overnight and held our baby. Needless to say, we did much worse than he did. He was a trooper through it all. I loathed the spica cast at first but Brody really didn’t have any issues with it.

He learned to crawl, which was more like an army crawl/scoot. He danced in his cast, we called it the turtle dance because his body went in and out of his “shell.” People signed his casts (he had three). We called him “baby in a bucket.” He opened his first Christmas presents in a bean bag chair. His last cast was “water proof” and he learned to like baths again. He always had a big smile on his face. He did everything other babies do, the cast did not inhibit him at all. I even got good at the cast! I felt so accomplished the first time we went to change his cast and the doctor told us his skin was the cleanest and best looking of any child in a spica cast he had ever seen! The trick? Menstrual pads. That’s right, pads, shoved into the cast to keep any moisture from leaking onto his skin.

When he got the cast off I cried so hard I think I scared him. He hugged me and gave me a kiss, I am not sure he understood they were happy tears. In keeping with our positive attitudes I had already planned Brody’s “big reveal,” a sail boat themed ‘cast off’ party to celebrate!

Looking back on everything I remember more of the good than the bad. When we were faced with the decision to apply a full body cast to a six month old it was daunting. I gained a lot of comfort from reading other parents stories and feedback about harnesses, casts, diapering, etc. I tried to stay as educated about the situation as possible thanks to the International Hip Dysplasia Institute this was possible-I knew the right questions to ask and could make informed decisions.

Brody is two years old now but we are not in the clear just yet, we go back to our orthopedic doctor on a regular basis to keep up with his hips. His progress is wonderful, but his hips are not exactly where they should be, we have high hopes this will correct itself with time, growth, and development. We are now facing the side effects of treatment-AVN, where the ball of the joint has lost circulation at some point. Our doctor assures us that Brody’s age makes it much more likely that this issue will correct itself, but only time will tell. This may be the end of our hip dysplasia journey, or we may have more road to travel.





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Brooke

Brooke

Hello my name is Brooke. Im from Potter county PA. To start my story I was never diagnosed with DDH as a child nor did...

Hello my name is Brooke. Im from Potter county PA. To start my story I was never diagnosed with DDH as a child nor did I have any signs or symptoms as a child. I will be 31 March 2017. I was diagnosed two years ago with DDH. I went through much pain over a 10 year period.

When the pain began I was at work just walking normally and I stepped down and my right hip made a load pop sound and then it hurt awful bad. I eventually maybe a couple years later went to my family doctor as the pain was intermittent, like when I changed from flip flops to sneakers. My doctor did NOT to any sort of x-ray. He referred me to PT. They diagnosed my pain as a pinched nerve, still no xray. About 5-6 appointments went and as I had to pay out of pocket I could not afford to go any longer and my hip hurt worse then when I started. approx. 8-9 years later, after a pregnancy and being very large, it had put a lot of strain on my hips. My daughter was delivered via C section because my hips did not open up like then should have. Still at this time I was NOT diagnosed with DDH.
After the birth of my child my right hip hurt with NO relief. It was then I went to see a new family doctor about my pain and my story. Finally I found a doctor who listened. She immediately sent me for an x-ray to make sure there wasn’t damage done in the hip. Well a few days later I receive an urgent message that I needed to see an orthopedic surgeon IMMEDIATLY!!! It was only then that I saw my x-rays, and I about fell off the table. I seen a chipped off piece of bone in my hip and it looked as though my joint was ready to dislocate. It was then I was diagnosed with DDH. I cried my mother cried. Thankfully I have an absolutely AMAZING doctor who basically held my had through this whole process. He even went as far as showing my xrays to his professors from school over in the UK and speaking with a his doctor friend at Duke University. They all said wait as long as possible before a total replacement. It was def too far gone and the hip needed to be replaced. So April 11 2016 I had my total right hip replacement.
Also I went to see a doctor at the Philadelphia Children’s Hospital to see if he could preform the Hip Preservation Surgery for my left side. He advised me to get my replacement first so that I would have a strong hip to recover on. Im ready now to go back down to Philly and discuss surgery.
So in all this has been a very scary ride for me and my family. I have had my daughter x rayed and she is clear of any dysplasia as now. Thank you for reading about my story. If you have any questions about the journey please feel free to comment!

-Brooke





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Caitlin’s Story

Caitlin’s Story

Caitlin was 16 months when she was diagnosed with DDH. I wasn’t happy with the way she walked she had a funny waddle and used...

Caitlin was 16 months when she was diagnosed with DDH. I wasn’t happy with the way she walked she had a funny waddle and used to fall a lot more than she should have. I took her to the GP and showed him her walk and explained she had a funny waddle and when I put her legs together her knees didn’t match. He agreed with me and sent me straight with her up to see a consultant at the hospital. I was with the consultant for 5 mins and straight away asked for an X-ray. Both our fears where confirmed and Caitlin was diagnosed with bilateral DDH. He had explained as she had no sockets it looked like she would need a salter osteotomy on both sides. As soon as she was 18 months he would do the first side.

Caitlin had her first salter in May 2012 and tried to do a closed reduction on the right hip. She was in cast for 10 weeks and . It took Caitlin 9 weeks to walk again but she wasn’t doing to we’ll and I had a feeling her right hip had dislocated again. I called the consultant and I had an appointment to see him the following week. He confirmed what I had thought and Caitlin was scheduled for theatre 2 weeks later. Caitlin had her second salter osteotomy in october 2012. She was in the second cast for 8 weeks this time and was walking before we left the hospital. Caitlin had her last spica cast removed 1 week after her 2nd birthday.

We are waiting for November 2013 (around her 3rd birthday) for our next update.

During all this process Caitlin was such a happy baby and really learned to adapt to her life in a spica cast. 2012 was a very fast year and it went through in a blur. Her consultant was so kind and gentle with Caitlin and ever to Caitlin’s dad and I. We couldn’t have a better service and very grateful he is her consultant.





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Cara

Cara

I first began experiencing hip pain when I was 17 years old and a junior in high school. I was trying out for my varsity...

I first began experiencing hip pain when I was 17 years old and a junior in high school. I was trying out for my varsity soccer team when I felt that I had pulled my hip flexor. I took a few days off from practice to wait for it to heal, but unfortunately it never got better. I would wait a few days then try to run, and the same pain would always return, quickly becoming sharper and deeper into the joint. I saw a doctor in NYC, and he diagnosed me with a labrum tear in my right hip. I had my first hip arthroscopy done in the winter of 2008.

When I went back for my 6 month check up and complained to the surgeon that I still had the exact same pain as before the surgery, he looked at me like I had four heads. He told me it was impossible and sent me away. I don’t think I did any real activity for two years after that, but slowly broke into swimming, which seemed to make my muscles stronger. Eventually I did get back into running (approx 3 miles, 5 times a week) but that took about 3 years post-surgery.

After college graduation in 2012 I got into crossfit, and within a year of starting that, my hip pain came back in both hips. I went back to the same surgeon (stupid me) and he did more MRIs and told me there were still labrum tears in my left and right hips. He said that the surgery I had in 2008 was now more advanced, and they were more aggressive with shaving down the head of the femur so it did not tear at the cartilage in the hip. I had another arthroscopy on my left and right hips in 2015.

The pain stayed the same, originally only occurred when I was active (I limited my activities significantly) and day-to-day was manageable. But over the following months pain kept getting worse and became more day to day. Now I cannot walk around the block with my mom or go on hikes with my boyfriend. And I am a person who LOVES to be active, running or biking or weight lifting are all out of the question.
I met with a new doctor a few months ago (approx September of 2016) to look again at my labrums. He took a good look at my hip and mentioned that the joints appeared to be anteriorly rotated (basically, they were pushing forward out of the socket) so that the socket was not fully covering the femur. He referred me to a specialist who is supposed to be the best. The new doctor diagnosed me with mild hip dysplasia (you wouldn’t see it on a regular xray) and recommended me to have a PAO so that the femur is correctly seated and protected by the joint. He says my illiopsoas and hip flexor pains happen because they are essentially taking over the role of the hip socket and “holding” my hip joint in place. It seems like a believable explanation for my horrible tendon and muscle pain in the front of my hip and in my groin.
I’m now scheduled to get this PAO surgery on my right hip on August 8th. I need to wait a few months due to work obligations and needing time to pray about such a serious surgery. I have seen way too many horror stories on the internet of people who got worse from this surgery, and cannot function day-to-day without horrible pain. My pain is bad, but the devil you do know is better than the devil you don’t! Hoping that someone might have had a similar experience as me and might have some advice. Thank you!





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Cassie

Cassie

I am 26 year old veterinarian and an was diagnosed with hip dysplasia 3 years ago (later half of 2012). The unfortunate part was, that...

I am 26 year old veterinarian and an was diagnosed with hip dysplasia 3 years ago (later half of 2012). The unfortunate part was, that this diagnosis only came through me pushing my doctor. Throughout my childhood, from as early as I can remember (being about 4 years of age) I suffered severe hip pain and associated problems only to be pushed away by family doctors, disregarded as growing pains, or it just being in my head. My mum was told she was ‘cruel’ for wanting me to be x-rayed to be checked. I was always picked on for walking funny, my mum used to say that I waddled… others simply said my lower posture was terrible (I find my pelvis rotates forward, without me realising to increase femoral head coverage to minimise subluxating).

It was in 2010 when, after not being able to walk, get in and out of bed or a vehicle, and starting to subluxate my hip that I saw my GP about my hip/groin pain. This doctor referred me on for X-rays and ultrasound. The X-rays had to be sent away to be read by a radiologist, the ultrasound results were seen on the day (I am a vet so understood what was going on). On ultrasound they found a right inguinal hernia, this was my most painful side. I can remember laying down for my X-rays making the remark that I swore my hip joints were the problem and that I could feel them popping out of joint. The look I got was priceless and one of ‘I think you’re silly and over-reacting!’. I went back to my doctor a few days later and the diagnosis was made of a right inguinal hernia and that, quote, my X-rays of my hips were ‘anatomically normal’ (I will attach a photo of that!).

So I got the hernia repaired. Six weeks of rest followed and I was feeling better. I then tore my cruciate ligament in my left knee. A few more months of rest. My hips felt generally ok. But as I began to get more active the pain came back with an absolute vengeance. I was certain now that my hips were dislocating. I couldn’t get around most days. I couldn’t walk more than 100m at a time. My parents had to wait at every corner of the street for me if we went shopping down town in Wagga. That says a lot considering my mother has injuries from a car accident from over 15 years ago and is slower than the average person getting around.

I returned to my doctor in 2012 and voiced my concern. I said to him it was in the joint and I thought they were dislocating. He replied with ‘but you would be in a lot of pain’. I answered simply- ‘I am in a lot of pain’. I could see he didn’t believe me. He asked if I had been to hospital and I said no. He tried to dismiss me. After a bit of backwards and forwards with him he agree to refer me to have X-rays and an ultrasound, but only because he thought my hernia had reoccurred.

So back I go again. This time on ultrasound they found I had basically no labrum left on my right hip joint and I had what looked like a a cyst on my femoral head. On the X-ray table I laid there in agony. My right hip subluxated as I was asked to lay down.
The results came back as bilateral hip dysplasia. I was referred on to a hip surgeon in Wagga. I took my X-rays from 2010 as I did not have the current ones (as they had changed to a digital, web based system). He read those X-rays and came up with the same diagnosis. He told me he had to refer me on, I was too complex and I needed expert advice. This was in the June of 2012.

The following January (2013) I visited my current specialist and reknowned surgeon Dr Michael Solomon in Sydney. He agreed with my diagnosis and I was placed onto the waiting list for a PAO. He said if I didn’t have this in 5 years time I would need total hip replacements of both hips. I have now had my right PAO done, exactly 12 months ago and am booked in for my second, on my left in June alongside screw removal for my right.

It has been quite a journey for me. And my parents. It has been one of upset, disappointment, frustration and heartache. But at the same time one of gratitude and positivity as I know what is wrong with me now, and know it could be much worse (e.g. bone cancer etc). My right hip is starting to feel good, in the last couple of weeks I have noticed a tremendous difference. Not saying I am pain free, but it is a darn sight better than what it was. Hopefully once I am fully recovered, after the next 12 months have lapsed I can start to appreciate a somewhat normal life again.

Thanks,
Cassie MacDonald
#PAOproud





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Cat

Cat

I was born in 1983, and my legs were not frogged as normal babies usually are. They were out straight. The doctors told my mother,...

I was born in 1983, and my legs were not frogged as normal babies usually are. They were out straight. The doctors told my mother, Grandmother, Grandfather and Father that my hips were out of socket and that a pillow brace would help that. It helped my left hip pretty good, but with every growth spurt I had the right would come out the femoral head growing straight instead of an angle, and the socket they found out later was deformed badly. They did not officially call it displasia till I was about 2.
I remember being in braces, and having surgery every other summer. Those were the summers I dreaded most because I couldn’t go play with friends or swim in a pool. I tried my hardest to hide my displasia even from doctors and my family. They new better. From 2 months old to about a year old I had several closed reductions, after a year I had open reductions which then over the years turned into ostiotomies. My right leg after that was always an inch or more shorter than my left. My back grew to compensate and I ended up with Scoliosis. My second to last major surgery was called a salvage operation and was done in San Diego California by Dr Richard Santore. He warned that it was not a fix all operation. I was 18 when that was done. At the age of 24 I had a full hip replacement on the right side. While it has helped with my hip movement and prevent it from popping out, I have more pain and issues with my back and the already several damaged nerves on my right thigh. I do believe my pediatric surgeon Dr. Richard Shindel used some of my x-rays at conferences discussing the hip issue.. I Never knew there was a foundation like this one. All these years every one looked at me weird when I told them about my hip issue. “Thats only in big dogs.” No. I can prove it with saved pins and plates, photos, x-rays, and huge 3-ring binder full of medical records about it.





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Cecilia

Cecilia

Beginning at 32 weeks of pregnancy, Cecilia was frank breech (meaning that she her legs were straight with her ankles by her ears). We knew...

Beginning at 32 weeks of pregnancy, Cecilia was frank breech (meaning that she her legs were straight with her ankles by her ears). We knew this meant we would need to have a c-section and were actually looking forward to the predictability of it all. Other than being breech, the pregnancy was without incident.

We arrived at the hospital on that June morning and got prepped to go into the OR. All numbed up, we waited to meet our little girl for the first time. Out she came and off she went to the warming table to get cleaned up and assessed. Her legs looked gummy and her feet were up by her ears and turned out. It looked strange but we assumed all was well.

Upon her first assessment by the hospital pediatrician, he mentioned that he felt a click and that he was able to pop make her hip pop out of socket. He mentioned the words ‘hip dysplasia’ but said we’d keep an eye on them. I googled and googled and tried to prepare myself. It didn’t sound so bad but was still a bit scary. During the following couple of pediatrician assessments while in the hospital, they mentioned that her hips were tightening nicely and that the relaxin was starting to clear her system. They had to try really hard to get that click and said that her hips might be just fine after all. So we started to relax.

At our first pediatrician appointment a few days after leaving the hospital we were told that all breech, girls (especially first born) get referred to the children’s hospital for ultrasound. Sounded totally routine so we scheduled out appointment for a few weeks later.

At 5 weeks old, off we went to get our ultrasound. Our appointment with the pediatric orthopedist was the following week. We were feeling optimistic and hopeful due to the physical exams all showing nice tight hips.

….but…our ultrasounds showed that we had severe dysplasia with full dislocation of both hips. We would have to go into a pavlik harness 24/7. During my initial research in the hospital, I had learned of the pavlik harnesses and had convinced myself it wouldn’t be all that bad. But getting the news we were going in one felt awful. No longer would I get to snuggle my soft, floppy baby. She would be in a stiff velcro rig. I held back tears as we strapped her in and I asked as many questions as I could think of. I struggled to fit her into her carseat and off we went. I spent the next week sadly saying goodbye to all the clothes we couldn’t wear because they didn’t fit over the harness. We had to relearn how to hold her and feed her.

One week later, our ultrasound showed that the harness was keeping her hips where they needed to be and we got the green light to take her harness off for up to one hour per day for baths and clothing changes. I coped by ordering pavlik specific clothing (underserved market here! Had to order from small companies in New Zealand and Australia). We soaked up our 45 minutes of post-bath snuggles a couple times each week as I basked in her wet noodle-ness.

Just like everyone told us, it got easier. It became our normal. It wasn’t a normal we liked but we knew how blessed we were that it was “just” hip dysplasia and that it could be fixed with some velcro. We didn’t go back for 5 weeks after that. We found support groups online, read as much as we could on IHDI, and talked to other parents who had dealt with this. We realized just how resilient our little girl was as she wasn’t fazed by any of it. We also realized she was much stronger than us. We struggled while she smiled away, not knowing any different. She started daycare in this time, at 7 weeks old. We struggled to trust that daycare would follow all of our hip healthy rules (spoiler alert: they did phenomenal).

At our 6 week follow up, we were told that her hips were looking really good. Her development was progressing and we were cleared to let her out of the harness for TWELVE (!) hours a day for the next 6 weeks. We were beside ourselves with joy and also terrified. Was it long enough? Would she regress? “What if’s” ran wild. Even worse, bedtime was the suggested in-harness time. That meant daycare got to enjoy our noodle baby and our time with her each evening was back in the harness. Again, she handled it like a champ. Pulling her knees up as soon as it was time to put the harness back on.

The night before our 12 week appointment, anxiety hit. What if she wasn’t ready to be out? What if they got worse? What if we haven’t done a good enough job? We were blessed with wonderful news that her hips looked great. We were allowed to remove the harness for good…for now. We are fresh into the process and are still waiting for 6 month xrays to tell us if we’re still on track. We know there is a risk that we’ll need future intervention. But we are thankful for this process. We had never heard of hip dysplasia outside of dogs. We learned a lot. Most importantly we learned how strong a baby can be and how quickly a family can bond together in difficult times.

We found great comfort in the International Hip Dysplasia Institute resources and couldn’t have been more grateful. We were able to find hip healthy practices, swaddles, and carriers through the website. We were able to learn what to expect and were validated by the stories of others. Our girl will always be a hippy baby but we know that early interventions means she might get to live a life free of long term hip pain.





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Cherisse

Cherisse

Poppy Love’s Hip Journey My daughter, Poppy Love Wilcox, was born July 29, 2012. Poppy is my first born and is an IVF miracle baby....

Poppy Love’s Hip Journey

My daughter, Poppy Love Wilcox, was born July 29, 2012. Poppy is my first born and is an IVF miracle baby. Having her at 41 years old, she is truly my life-long dream come true. The greatest day of my life was giving birth, holding her and gazing into her eyes. Her middle name “Love” divinely came to me minutes after she was born…

When Poppy started walking, we all noticed something was “off” with the way she walked. She started catering to her right side and just seemed to “waddle” more than she should. We mentioned this to her pediatrician at her 15 month visit; thinking maybe one of her legs was longer than the other. He measured her legs, looked at her closely, shook her legs out and told us she was “just fine”. We noticed that as time progressed, her condition wasn’t improving and she was beginning to stand on her right leg, lifting her left. I also noticed an indent forming on her left buttock.

In retrospect, down deep in my gut I knew something was wrong with Poppy. I definitely pushed those terrifying feelings away from my heart, staying safely in denial; blindly trusting my doctor. The possibility that something might really be wrong with my daughter was my deepest fear in life. I just did not believe it could be possible. At 28 months, I finally took matters into my own hands (with the push of my mother’s guiding intuition and encouragement), and got an x-ray at a local orthopedic clinic. This made it very clear it was her left hip and not her legs at all! Her left hip was severely dislocated. I was in shock!
November 24, 2014, Poppy was diagnosed with Developmental Dysplasia of the Hip (DDH) at Children’s Hospital in Denver. This is a condition in which there is abnormal development of the hip joint. In Poppy’s case, she has a severe case where her femoral head is completely dislocated from the bone of her very shallow hip socket. It was most likely there from birth, but never diagnosed by either of her three pediatricians. So, it may have developed after birth, but we will never know for sure…

This is why AWARENESS and trusting your intuition are both vitally important. If I was educated about hip dysplasia, I would have gone about things differently. I would have been aware of hip healthy swaddling and safe baby carriers. I would have most likely pushed my doctors to give Poppy an x-ray and gone for 2nd, 3rd opinions. If I would have been brave enough to trust my gut, that inner voice that knew something wasn’t right, I would have acted sooner…
January 20, 2015 was Poppy’s surgery at Children’s Hospital in Denver, CO. (Before surgery I did everything I could to prepare Poppy. I bought her a “doctor’s kit” and read to her “Hope the Hip Hippo” twice a day). I held my precious baby girl as my husband and I rolled into the operating room. The feisty girl she is fought and swung her arms at the gas mask (even after she was given a narcotic to “relax” her) until we witnessed her go deeply under. I gasped and my eyes welled up as I witnessed her tiny body lay still on that large, cold, intimidating operating table. I was scared to death. I was forced to face my deepest fear head on and deal with whatever outcome would come to be…

She had an open reduction to position the ball into the socket. Her femur bone was shortened to aid in the process. Before the surgery, our doctor thought he would have to perform a pelvic osteotomy because her x-ray showed an extremely shallow hip socket. This luckily didn’t have to happen because her femoral head (ball) fit back into the hip socket naturally without popping out. This was even a surprise to our doctor; it was a Miracle! Her surgery was a huge success and I felt deeply blessed. My angels were listening and all the prayers from family and friends paid off in spades!

When she woke up and I held her in my arms, I soon realized this was the second greatest day of my life (next to her birth). I was overwhelmed with love, gratitude and relief beyond anything I can express…

This surgery has given Poppy the best chance to have “HEALTHY HIPS 4 LIFE”! The plate in her leg will come out in two years (when she’s four years old) and we will know if another surgery will be necessary at that point. Our doctor says there is a 30% chance…

Poppy’s Facebook page is a blog for me to share our journey and provide awareness, support and inspiration to the world. When I first found out about Poppy’s hip dysplasia I was devastated and just wanted to cry all day, and keep this devastating news to myself. I experienced every heart wrenching emotion: sadness, shame, why my daughter, anger, regret, guilt, and on and on. I eventually came full circle with my feelings and realized I needed to embrace the reality of Poppy’s situation and be brave for her. I needed to be the courageous mother she needs to embrace, heal and overcome her situation whatever her long term outcome would be. Finally, I needed to live by my life-long belief that “everything happens for a reason”. It’s incredibly difficult to embrace this spiritual truth when it’s the health of your child. I was being tested…

One morning, loud and clear, my heart spoke to me that I needed to share Poppy’s journey with the world! This was one of the many “reasons” emerging from her hip dysplasia. I knew the love and support I would gain from Poppy’s blog would help give me the strength to be the positive force she needs. I also knew that if we could help even one family prevent hip dysplasia through Poppy’s story, it would be a blessing for us all!

February 20, 2015…. We are one month into our journey and living with a Spica Cast. The outpouring of love and support has been incredible and our family is deeply grateful. We are humbled and uplifted by the positive energy surrounding Poppy. Poppy’s first x-ray looked perfect and she is on her way to a healthy recovery. Her courage and resiliency blow me away! Our story has already been able to help and inspire other families going through similar situations. No one overcome’s life’s challenges alone, and we are doing are little part to help others and spread the LOVE!

We welcome you to join us on “Poppy Love’s Hip Journey” as it courageously unfolds. Here is a recent post from Poppy’s Facebook blog:

February 17, 2015: “I’m not spending my days chasing Poppy non-stop around the house, watching her get into everything possible. With her being forced to stop and be still, it’s forcing me to stop and be still. I’m spending more quality time in the moment with my daughter. I’m learning to be 100% present! Laughter, music, singing, art, painting, blocks, puzzles, games and conversation fill our days now. I’m watching her over-compensate mentally and she is developing new skills rapidly; especially her ability to speak in full, clear sentences! She didn’t sing very much before surgery, and now she sings all day! She didn’t used to spend more than a few minutes coloring and painting, but now she enjoys art for hours out of the day! It’s remarkable to watch her grow and progress in new ways because she has to…This is another remarkable “silver lining” in “Poppy Love’s Hip Journey”! If we let ourselves, we will learn, grow and evolve from the challenges life gives us!

We wish you and your child the very best on your hip journey!





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Chloe’s Story

Chloe’s Story

It all happened so fast. 1 day post delivery and during a routine check, the doctor paused and said “oops, hear that? It’s clicking!” I...

It all happened so fast. 1 day post delivery and during a routine check, the doctor paused and said “oops, hear that? It’s clicking!” I looked over and realized she was maneuvering my daughters hips around. I looked panicked and she assured me “worst case scenario – she wears a harness for a while. Ill give you an appointment with a local ortho ”


I left the hospital and brought my new perfect bundle home and tried to block out the worry until the day of the appt. “it won’t happen to us”. Unfortunately, 3 days later at the orthopedic appointment, the doctor said without hesitation “yep, let me fit her into a harness. We will wear it 23 hours a day for a few months”
I was fine until we got home and called my mother. I was telling her what this weird harness looked like on my perfect baby, and broke down into tears.


Chloe wore the harness all day every day for months. She had ultrasounds every 2 weeks. She had major open wound sores behind her knees that required an ER visit. She never complained – because she didn’t know any better.
The truth is- she doesn’t and will never remember any of what we went through , and in the end – it worked… at 4 months old we weaned out of the harness.
I’ve kept it to remember how lucky I am.
Ill show her when she is older how lucky she was, too.
Thank goodness for the awareness of HD!





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Christine’s Story

Christine’s Story

Hello! I am so happy to see this website. I am 44 years old. I was born with hip dysplasia. It was not caught until...

Hello! I am so happy to see this website. I am 44 years old. I was born with hip dysplasia. It was not caught until I was 10 years old. I have always had pain in my hips and walked funny. My mom took me to the doctor. and they said I need to have bilateral pelvic osteotomy. I missed the whole 5th grade. I was in a body cast, then a wheel chair and then crutches. they did the right one first then 6 months later the left. I was so young and had no clue of what I had. I returned to school in the 6th grade. I was told by my doctor not to run on cement, gain a lot of weight and that I would have to have my children c-section. When you are 11 you really do care about that stuff.

I lived my life had three children. At 32 my hips started to bother me. I had not been to an orthopedic in all of those years (big mistake and shame on my mom) lol. They tried cortisone injection, but the pain was too much. My hips had brought me down once again. I had bilateral hip resurfacing in 2000 (right) 2001 (left). Due to the surgery my right leg was longer then my left. It took me 2 year to recover from that surgery.

Once again going through life and then in 2010 I start to have a very bad pain in my groin on my right side. I knew something was wrong. I had moved at this time so I had to find a new orthopedic. He did testing and came up with nothing. He told me he did not see any reason for revision. I got a second opinion. This doctor ordered me a cat scan. He told me that the prosthetic was breaking down and was deteriorating my bone around the prosthetic. He told me I had to have revision on my left and he said the right one was the same. I had my left hip done April 2011. Once again my hips had brought me down. I had the right one done Dec. 2011. I had to quit my job after this last surgery. My legs are weak and I suffered a pelvic fracture in March of 2012.

I am praying that these hips will jump back up and take some control. 🙂 This has been a very long journey. A journey that I don’t want other children to have to go through. I will spread the awareness. I thank you for this site I don’t feel so alone in this. I was beginning to feel like a wimp after having to quit my job. lol Thank you





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Christy’s Story

Christy’s Story

I remember the day the doctor told me I wouldn’t be allowed to run again. I stared blankly back at him. Being an athlete had...

I remember the day the doctor told me I wouldn’t be allowed to run again. I stared blankly back at him. Being an athlete had always been part of my life. My identity. And although the hip pain had worsened dramatically over a period of only 6 months, I prolonged going to see an Orthopedic because I knew I was going to hear those words.

At birth, I was born with a condition called developmental dysplasia of the hip. My hip socket wasn’t aligned correctly. At only 2 years of age, I had surgery to help correct the condition. I was placed for 6 weeks in a double-legged cast. Growing up, my parents never focused on what I couldn’t do. I started gymnastics at a young age, then soccer, track, cheerleading, and my college dance team. Upon graduation of college, I ran my first half marathon. I was raised to believe my condition didn’t prevent me from completing any of my goals. I am grateful my parents instilled this faith in me at a young age.

However, as I progressed into my late 20’s, I could no longer ignore the pain that had worsened in a short amount of time. I was referred to Dr. S, one of the top Orthopedic surgeons in the country. It was then he said those words. “Stop running.” He recommended I get another surgery, called a Periacetabular Osteotomy (PAO). My hip X-ray showed the beginning stages of arthritis, and this surgery would preserve my own hip joint, and potentially prevent me from needing a total hip replacement down the road. February 2012, I went into the operating room. I spent five days in the hospital, and two and a half months on crutches. Four months off of work. For a year, three large screws were embedded into part of my hip.

Living in sunny San Diego, one of the most active and fit cities in the country, it seemed as if everyone around me was athletic and running. There were days I was depressed. I couldn’t imagine what a life without sports would look like. Thankfully, I found Yoga, which has now become my passion. I feel healthier than ever.

Today, I work as a Pediatric nurse on an Orthopedic floor. I assist in caring for young children that are placed in the same cast I was at a year old. I also care for teenagers that receive the same surgery I had as an adult. I am able to show parents of these children pictures of me as a child, in a spica cast, and help ease their worries that their children will be able to live a normal life. Since being a patient myself, I am now able to relate and connect to these children in a powerful way that I couldn’t before. My job has never been more satisfying and rewarding.





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Claire

Claire

On April 11, 2016, I delivered my first child, a baby girl, named Claire. When I was admitted to the hospital, my doctor discovered that...

On April 11, 2016, I delivered my first child, a baby girl, named Claire. When I was admitted to the hospital, my doctor discovered that my daughter was breech presentation. The decision to pursue a caesarean section was made.

Immediately post-op everything was a blur. I was exhausted and barely able to stay awake. The next morning, the pediatrician came to visit and on his examination, he determined her left hip had a “click” which was concerning for hip dysplasia.

As a new parent, I was nervous to hear that my otherwise, healthy, full-term baby might have a problem with her hip development. As a nurse practitioner, my mind immediately thought about possible long-term complications (delayed or impaired ability to walk, etc.) However, since I work in critical care, I tried to put the information into perspective. I told myself, I just had a healthy baby and a successful surgery and that I needed to worry less and trust more. The pediatrician was wonderful! He referred us to the pediatric orthopedist. The orthopedist recommended a Pavlik harness, a type of fabric stabilizing device, to help keep the hip in the correct position and allow the joint to further develop. I did not realize that an infant’s hips are rather malleable and so by diagnosing Claire’s hip dysplasia early, the harness could reposition her hip and allow for healing over the course of several weeks. She wore the harness for about 12 weeks and had some follow-up ultrasounds and then x-rays to confirm resolution.

At the time, the harness made taking care of a newborn a little more complicated, especially with diaper changes because there were a lot of straps to re-secure. Now, my daughter is 21 months, and I barely remember the Pavlik harness. She is not only walking but running with no pain and no physical limitations.

My gratitude for her pediatrician who astutely and promptly diagnosed her hip dysplasia and for the expertise of her pediatric orthopedist will endure for the rest of my life. They took wonderful care of my daughter! Since Claire’s experience, I had another friend whose daughter was breech and had hip dysplasia. It was so nice to be able to share my experience and encourage her and her husband as they went through a very similar situation. My hope is this post will also encourage you! Please share your experience with family, friends, neighbors, etc. to help raise awareness of a problem, that if detected early, can be be successfully treated as if it never existed in the first place.





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Clara’s Story

Clara’s Story

Clara Mae is a healthy beautiful baby. Her birth was a piece of cake, no issues. Not until her 6 month check up in January...

Clara Mae is a healthy beautiful baby. Her birth was a piece of cake, no issues. Not until her 6 month check up in January 2015 Did we know anything was going on. At her 6 month check up, her doctor was going through the normal well visit routine when she got to her legs. As she moved them around she noticed Her hip joints were very tight. She immediately sent us over to the hospital for x rays to determine Her left hip was dislocated.

The very next day we were sent to a pediatric orthopedic specialist. Being 6 months old, this was the cut off line to try the palvic harness. Since Clara had just turned 6 months old We did attemt the harness for 4 weeks. The harness did not show enough result. Clara was put to sleep, her groin muscle was punctured, and she was placed her her first spica cast. Clara was in the cast for 5weeks.

When it was time for the cast to come off she was fitted for her rhino cruiser. After 4 weeks in the cruiser her hip was pulling back out of socket. This catches is up to date. Clara was put back to sleep, a dye was injected to check proper placement of the hip, and she was placed in her second spica cast.

We have been in this cast for, a couple days shy, 7 weeks. We go to the doctor this afternoon, June 9, 2015, in prayers we can be placed back in the rhino cruiser and free of casts forever!
I have one trooper on my hands. She crawls, rolls over, stands up, and tries to walk!





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Clare

Clare

I’m a 34 year old, spinal nurse sister, with 2 children and 2 step children. I have been an active gym goer for 15 years...

I’m a 34 year old, spinal nurse sister, with 2 children and 2 step children. I have been an active gym goer for 15 years and believe keeping in shape to be important. I have always known I was born with my hip dislocated and that I had a splint or something on for quite a while as a child, as it wasn’t noticed until I was 6 weeks old. Throughout childhood and early adulthood I had no issues and it was never discussed.

Unfortunately my parents passed away before I turned 20 so I don’t actually have anyone to question about past events now.
Around 4 years ago I started having what I thought was lower back pain. I had xray and scans that turned out to be fine. I put it down to my career.
I stuffed along with amitryptaline at night and ibuprofen as required in the day but, around a year ago, decided I wasn’t happy to struggle like this at my age and saw my physio again who suggested the pain may be hip related. This suddenly clicked into place with me and upon returning to my gp I had a hip xray.

This, I was instructed by the doctors receptionist, was fine!!!!! I was devastated and relieved all at once.
I carried on but the pain was getting worse and I could now clearly define it as being deep in my hip and around my back. All I had to do to exacerbate the pain was a light gym workout or a lot of bending or sitting.
I went back to the gp and finally got to see an orthopadic doctor who looked at my past hip xray and immediately said I had hip dysplasia and that it was quite obvious from the xray.

She referred me onto a hip specialist who also said I have hip dysplasia on my right and also slightly on my left. He said he needed to refer me to a hip dysplasia specialist. I’ve been waiting 4 weeks now and pray they will help me.
I started taking tramadol 50mg as required 4 weeks ago. 2 weeks ago I was shunted from behind in a minor car accident and since my pain has trebled. I went to a&e who didn’t feel I needed xray just rest. I had to call in work sick and went to see my gp 1 week ago as the pain was crazy. She put me on 100mg tramadol 4 times a day. It helps with regular paracetamol and ibuprofen but I would rather know my outlook.

Importantly to me is what exercise is it ok to do? I get told swimming but that isn’t me. I’ve been heavily into training for years and enjoy kick boxing and lifting moderate weights. I want to know if I’m making hings worse by doing certain exercises (eg squats and lunges) or if the pain I feel afterwards can be managed as there is no damage being done. I may seem to be ridiculous here but exercise is so important to me. Both physically and mentally.
Can anyone advise or help? Tia.





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Claudia’s Story

Claudia’s Story

Claudia was born full-term, the second child, of a normal pregnancy. The only problem was that Claudia aspirated meconium while still in utero and had...

Claudia was born full-term, the second child, of a normal pregnancy. The only problem was that Claudia aspirated meconium while still in utero and had to spend 4 days in intensive care. Once home things were fine and not one of the 4 different pediatricians that saw her in the first few days discovered her hip problem.

At her nine months check up I mentioned to the pediatrician my concerns about the way Claudia’s legs, especially the right one, turned out. We were given a referral to an orthopedist, but not a pediatric orthopedist. The orthopedist simply felt her legs and hips with his hands and did not take x-rays. He pronounced her fine and said I was worrying needlessly.

At the 15 months well baby check up I again brought up my concerns. Claudia had been pulling up to stand since she was 9 months old. Yet in all that time from 9 months to 15 months she was unable to take a step by herself without holding on to something. She would cruise around furniture going sideways but never going forward. I found out later that in a child that has bilateral (both hips affected) DDH the inability to take an unassisted step forward is a common sign.

We were referred to a pediatric orthopedist and within minutes of being in the exam room he was able to tell us that he suspected she had CDH (oftentimes called DDH now). Based on his physical exam and all that we told him about the way her legs turned, the inability to walk, etc. he diagnosed her with bilateral congenital dysplasia of the hip with acetabular indexes of 45 degrees in each hip. He took x-rays which confirmed his diagnosis.

Arrangements were made for her to enter the hospital the following Monday for skin traction of her legs. This was on a Thursday. When we entered the hospital, long pieces of a special tape with a metal bar that went across her instep were taped to both sides of her legs from her thigh to her ankle. Over top of this was wrapped ace bandages. The weights were attached to ropes that connected to the bar at her foot. She was attached to the traction for 8 days and was allowed out to eat her meals in a high chair. Other than that she stayed attached to the weights.

After 8 days, Claudia’s ortho determined that her muscles and ligaments has loosened up enough for him to do the operation. Since she was so old when the DDH was discovered, her femurs had been trying to make a hip socket about two inches above the normal spot on the pelvis. In that time the muscles and ligaments tighten up. During the operation the ortho performed an adductor tenotomy. This means that he cut the tendons on the inside of her legs to allow the femur to be placed in the correct spot on the pelvis. He was able to perform a closed reduction because there was no socket at all so there was no place for cartilage to collect. Then he put her in a hip spica cast which went from her armpits to her toes. She was in the shape of a staple.

Six weeks later he changed her casts. It was at this time that he determined that she would need three sets of casts for a total of almost 19 weeks in body casts. One good thing was that each time the casts got smaller- her first cast went to her toes, the second one went to her ankles and the third one only went to her knees, she had spica shorts. After her third cast came off, Claudia’s doctor decided that her acetabulums were still too shallow. Her acetabular indexes were in the low 30’s after 19 weeks of casts. She was put into a walking abduction brace.

Claudia wore the brace 24 hours a day for the first 5 months. After 5 months she was allowed to sleep without the brace, but she was not allowed to stand or put any weight on her legs without the brace. Six weeks after getting the braces Claudia took her first unassisted step. She walked like a cowgirl as we liked to say, but at least she was walking!!

After she had been in the braces for about two months the ortho started talking once again about the possibility of Claudia needing osteotomies. The braces were helping some but there was still a long way to go to get full coverage of her femurs. We continued to have her wear the brace all of her waking hours, but four months after starting the braces it was apparent that no more progress had been made. Her acetabular indexes were 28 degrees on the left and 35 on the right.

2 ½ months later (total of 7 ½ months in the braces), after we had gone for two additional opinions, Claudia had bilateral pelvic Salter osteotomies. In this operation the ortho takes a graft of bone from the rounded hip area. The doctor makes a cut through the bone above where the femur rests and inserts the bone graft. One or two 2-4 inch pins are inserted through all the pieces of bone to hold everything together. Then Claudia was back in a hip spica cast from her armpits to her toes again for 7 weeks.

The osteotomies were not tolerated well by Claudia. The surgery was 4 ½ hours long and anytime she has to have anesthesia for any length she gets very sick. So she was throwing up for two days and she had muscle spasms. The ortho ended up ordering a narcotic to let her sleep which was put into her epidural to help her recover. Once we were released from the hospital, Claudia started to become her old self about 14 days post-op.

She developed an infection in the pins in her left hip. She still has a scar on top of the osteotomy scar on the left side from the infection. Seven weeks later Claudia went back to the hospital to get the pins taken out and also to have the cast removed. Her doctor did not order any physical therapy since he felt that the normal crawling, pulling up, playing, etc. would be enough for her legs.

She started to walk without any help 5 weeks after the pins came out and the casts came off. We were so thrilled, it was something I wondered if I would see. We went back for check-ups every few weeks at first, then every three months, then every six, now she goes for a once a year check-up and will continue to be checked until she has completed her growing. It was a long trying road, but my daughter is now fine. She remembers much of the ordeal, and still talks about it five years later, but she is healed and hopefully will not have any additional problems related to the DDH.





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Codruta

Codruta

Hey guys, I am a 25 year old young woman from Romania (Eastern Europe – for those who don’t know where Romania is). This is...

Hey guys, I am a 25 year old young woman from Romania (Eastern Europe – for those who don’t know where Romania is). This is my hip dysplasia story. It’s a story that to me is unique and out of the ordinary, but which apparently is not much different from all of the others posted here. That makes me glad, makes me feel less alone in this 🙂 Here goes!

I was born with hip dysplasia. My mother noticed that I was only moving one of my legs, the left one I kept perfectly still. So I ended up having surgery at six weeks old. Only a baby and I had hip surgery. It wasn’t much success, I also wore a cast that covered both my legs up to my waist. I also had weights hanging from my dysplastic leg and was even put in some sort of medical circle which I was too young to remember and the device is probably no longer used. At 4 I had another surgery and a cast that covered both my legs up to my waist again. It was traumatizing. I was a lively child and having to be imobilized was no fun.

After the surgery at 4 years old I had no surgery for a while. I didn’t have much problems with my hip. I could walk fine, run and didn’t have any pain. However, by the time I was 16 I had a leg length difference of 2 inches. It gave me a bad gait, it hurt my back and it hurt my legs. It hurt me both physically and emotionally. I didn’t like my gait at all. It felt weird and uncomfortable. Others would sometimes point it out to me, and some would even make fun of the way I walked. I decided to have surgery for it. At 16 I had surgery to lengthen my left leg with one inch and shorten the right one with another inch. This way the length difference would equalize.

The recovery for the surgery I had 16 left me quite traumatized. The surgery itself wasn’t a complete failure, but the way I and my family responded to the complications still hurts today. I was supposed to stay two weeks with my legs completely straight help down by cast that covered only my ankles, after two weeks I would get the cast off and start having a bit of physiotherapy without putting any weight on my legs for 2 months in total. Not so much right? Pretty reasonable I thought. However, after the cast came off I was in so much pain and my legs were so weak I could not even bend my knees. After two months I went to a check up only to find out it was a complete mistake not to move my legs at all, and that my bones were not healed. The consequence was that I had to stay another 2 months without putting any weight on my legs. I started physiotherapy which went alright, but my bones were only healed after 11 months after the surgery. Until then I had not held my own weight standing. I had not even used a wheelchair, and had only been imobilized in bed with a lot of pain. It was traumatic, and the whole thing was filled with mistakes. Thankfully I had a great young physiotherapist, who was also a dashing gorgeous guy, and lovely friends that constantly visited me. My family were also there for me as much as they could and each in their own way.

Fortunately, at one point I started walking and although the recovery was painful and long I can now walk just fine. My legs have only a 0.2 inch difference between them and I have some pains and aches here and there, almost every joint seems rusty, but I am doing alright for now. I can swim, ride a bicycle, walk for far distances, hike and do yoga.

I can’t really jog, it feels too weird. Some parts ache while others feel weak when I try to do it, plus I’m terrified it would hurt my dysplastic hip so I avoid it altogether. I still have a metal rod in my left femur, the leg with the hip dysplasia, but several doctors said they would only take it out when I would need a hip replacement which from their predicaments should be when I will be around the age of 50 or hopefully 60. I do hate the way my hip looks, it feels abnormal. My greater trochanter grew towards my iliac crest and it pokes out through my skin. People can’t tell when I’m clothed, sometimes not even I notice it, but I’m too self-conscious to wear any overly tight dresses and its quite visible when I am naked.

I’m pretty much afraid of not hurting my hip so I avoid any activities I think are dangerous such as running, jumping on trampolines or doing any high impact sports. I do stay active by doing fitness workouts, yoga, swimming and riding bicycles. I’m trying to protect my legs as much as I can while not living a life stopped by fear 🙂 It’s easier said than done!





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Courtney

Courtney

When I was a teen, through my twenties, and early thirties I was a runner. Always experiencing pain after a run in my right shoulder,...

When I was a teen, through my twenties, and early thirties I was a runner. Always experiencing pain after a run in my right shoulder, I went to a sports Dr. (in high school) to find out my shoulder pain was caused by the difference in lengths of my legs. Now I know that to be a characteristic of hip dysplasia.

Fast forward 15 years and I was 4 years into increasingly intense pain in my right “leg”.
I kept up my intense yoga schedule but had forgone running 2 years prior due to pain. Walking from my car to work was unbearable. I had to psych myself up to get the mental and physical courage to even walk to the bathroom. I hated the stares at my increasingly pronounced limp, the strangers coming up to me asking what was wrong … I just didn’t know !!!
Right when I couldn’t take it anymore, at age 33, I found out I was pregnant! For the first time! What a crazy turn of events. Given this new responsibility, I scheduled a long overdue MRI. It was that day that I was diagnosed with bilateral hip dysplasia. I would start with replacing the right hip, then the left, then in 15 years do it all again. It felt like a ton of bricks slammed me in the chest – how could this be real?
Pregnancy was excruciating, but there was an end in sight. Three months after my scheduled C-section I was going to have a total right hip replacement. I had ultrasound-guided cortisone shots injected into my pelvis every 3 months that kept me walking without a cane, crutches, or a wheelchair – that, and pride.

My daughter’s arrival into this world went wonderfully and my beautiful healthy baby was finally here. Now came the reality – I have to figure out a new body part, re-learn to walk, oh yeah and keep a tiny human alive – with my body!

Becoming a mother changed my hip dysplasia journey profoundly – I don’t know how I would’ve handled this without my baby, or if I would’ve even thought having a child was the right decision for my body. Although reading this story you may think that it was irresponsible to not seek proper treatment sooner, I believe there was something bigger at play and the diagnosis came exactly when it was meant to.

Before all this – running, swimming, surfing (sort of), hiking, yoga, teaching paddleboard yoga, and any physical activity were my identity – and now they were gone. Who was I without it? What made me happy? Would I ever be active again? Am I disabled? Is that my new identity…disabled? The thought plagued and embarrassed me.

That was one and a half years ago.

Today I just returned from surfing 5-foot waves on sunset cliffs in ocean beach – something that I watched from the sidelines for ten years. Eight months after surgery, I joined 8-week program called Ground Swell Community project that gave me back the skill and confidence I was seeking in the water (if you’re interested at all in surf therapy please check them out, they are amazing).
For my 35th birthday this July I went on an off-roading surf trip to Mexico where I had the courage and skill to surf off the grid spots. Nothing can describe how that felt, or feels every time my board touches the water. I saw myself in my mind teaching my daughter how to surf. I didn’t know how I was going to get there but things fell into place as they do.
When I tell you that my new hip gave me my life back – believe it. I am beyond grateful every day that I can do all these amazing things – but also that I can pick up my daughter without pain, walk her down to the farmers market, play hide and seek … all the things!

A lot of the time I have trouble wrapping my head around the surgeries and “things” that may come up in the future, especially as my now 35-year-old body begins to age.
If anyone reading this ever doubts their physical ability after this life-changing diagnosis – please don’t. You are capable of so much. So, so much.

If you’d like to keep in touch or share YOUR story please contact me on Instagram: Cali_surfin_mama





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Daniel

Daniel

I am a 35 year old male who was diagnosed with hip dysplasia around 5 years ago. The diagnosis was only made after I injured...

I am a 35 year old male who was diagnosed with hip dysplasia around 5 years ago. The diagnosis was only made after I injured the hip playing sport, which I initially assumed to be a muscle injury but did not clear up, and turned out to be a tear in the labrum where the cartilage had grown to compensate for the shallowness of my hip. Up until then I had led a normal life, with only minor pain when I walked long distances or exercised hard (which I put down to unfitness).

Initially I tried physiotherapy, which was not successful in alleviating discomfort, then surgery to clean up the tear to try to lift the symptoms. However the pain has continued to worsen and after further scans and consultation, the surgeon has recommended that I have PAO surgery (initially only on my symptomatic hip although both are dysplastic). He believes that due to my age and the fact the the surfaces of the labrum are not yet badly worn there is a good chance of success.

It has been interesting to read the stories of other patients on this website as I look for information to support my decision. I am terrified of major surgery and a long recovery period, especially as I have two very young children at home and will not be able to support my family while I recover (according to the surgeon, for 6-8 weeks I will have severely limited mobility). Currently my hip is a nuisance rather than debilitating, but the opinion of the doctors who have seen me is that it will only get worse with time until I need a full hip replacement.

I would love to hear stories of people who have been in similar positions to know whether it makes a real difference, or indeed people who have not had the surgery until it was too late, to know what the alternative is if I do not go through with it. Will I really get the benefit, given that I am not yet in severe discomfort? How much better will it be to have a PAO vs. a hip replacement? My mother has had both her hips replaced in her 60s and neither operation seemed anything like as major as the PAO… so as they say, is the juice worth the squeeze?

Any thoughts and opinions would be most welcome, and of course if I do go through with it I will keep my story up to date…





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Daniël

Daniël

HelloMy name is Daniël and I am 18 and just about to start University , I was a bit scared to post my story here...

Hello
My name is Daniël and I am 18 and just about to start University , I was a bit scared to post my story here because so many of you have seem to have it so much worse than me, in fact my story is really a success story

Lets just start at the beginning. I went to the doctor for the first time about this problem when I was about 8 years old when I still lived in the Netherlands. My mother noticed that something was wrong with the way that I walked and the doctors there indeed also noted the (‘chimi chungas walk’) and took x-rays of my legs and confirmed a difference in the length of my legs. I got special elevators in my shoes and that was the end of the story, but I was still in pain and walked funny.

When we moved to Canada the whole medical process had to be started over again. The family doctor was understanding and sent me to a specialist so we continued the process of figuring out what’s up. This time the specialist took an x-ray of my Hip as well and there I was diagnosed at the age of 11 with Hip Dysplasia. During middle school I had 3 surgeries done to attempt an early correction of the problem, one on the right which was very successful and one on the left which prolonged the live span of the hip but needed more work at a later date, and then one last one to remove the pins because I am quite skinny and I could feel and see them, which was unpleasant. Luckily i am quite good at school and tbh it’s middle school so I didn’t miss out on much anyways. The recovery time for these surgeries was rather minimal to the last one I’ve had

Let me also just say that I was lucky to have an amazing surgeon who came to visit me in the hospital often even on his night off just before he went to the opera with his Wife. He listened and explained everything to me and I wish that everyone could have such an amazing, helpful specialist.

The pain started to appear again when I was 17 and it was clear that another surgery had to be done, I was walking with a cane at this point and could barely participate in sports, I had to quit my swim team due to the pain. Swimming was my passion and the sport which I had been doing this whole time. Instead for exercise I met up with a personal trainer who helped me and taught me how to workout ( I think this really helped my confidence too which gets pretty low when your walking around with a cane and a bit of a hunch back like that guy from Notre dam. It was a great feeling when I bench pressed over a 100 pounds for the first time. The worst part to me in this period wasn’t my pain, I could deal with that like i have been my whole life, it was rather the lack of mobility that frustrated me not being able to sit down for an hour without getting pain, not being able to stand up, etc. I had a bed with a memory foam layer on top of my mattress and truly it was the only reason I was able to sleep at night at all. ( or maybe that was just me being a teenager.).

So I had my surgery during the winter break of Grade 12 which worked out pretty well timing wise. The surgery was a Bernese PO on my left hip and was done by two surgeons in Calgary. I Live on the west coast so that commuting sucked, plus at that time we lived on a small island so for after the surgery we hired an private ambulance to come pick me up at the airport and then drop me off at my bed at home ( see image).I lost a lot of weight to the point where the pain killers had to be inserted into my thigh because there was no fat on my stomach for the needle to penetrate. My recovery took a long time, and there were some moments where I truly thought I lost my sanity. Some of the after effects of the medication were rather unpleasant, and I’d rather not talk or remember my time in the hospital I don’t feel that to be appropriate nor on subject.

that picture is me on vacation in California on the spring break I finally got off crutches after that and switched to one crutch as I was regaining my strength. I walked with a cane for a short while and now here we are. Fully mobile, I bike to school every day and though there are some sports I am unable to do, I feel so much more free than I felt pre-surgery. Sure I can’t go for a run or hike without my cane or do anything that has too much impact on my hip but there is so much more that I can do.

Now we haven’t fully decided whether or not to do the surgery on my right hip as well but I think for now that I’d rather put it off. I haven’t felt limited by my right hip and until I do, I’d rather not go through a surgery. This hip will last me about 10 years , after that I will need a replacement hip, and I am okay with that, 10 Years is a long time for someone who has only been alive for 18.

I do not regret for a second the surgeries that I have had, I could not image living without them.
Feel free to email me or comment any questions you have. You can reach me at daan7887@hotmail.com

Thank you for reading- Daniël





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Danielle

Danielle

Hello my name is Danielle. When I was junior in high school, about 16, I was diagnosed with DDH. I was very active all my...

Hello my name is Danielle. When I was junior in high school, about 16, I was diagnosed with DDH. I was very active all my life but when I started running track my junior year I had a horrible pain in my right hip my coach took me it was in my mind so keep running. The next morning I couldn’t move or get out of bed so my mom made a doctors appointment with my family doctor. He took x-rays and could not see anything, but told my mom and I that he will send us to an orthopedic doctor to make us feel better.

When we got to midlands orthopedic Dr Fredrick Piehl had new x-rays taken. When he came in and slouched in his chair, he asked if this is how I sit, I answered yes. Then he asked if my hips ever popped or hurt growing up. Again I answered yes but told him my family doctor said it was growing pains and i’ll get over them. Dr Piehl then told me I had DDH in both hips!

My right hip was worse than my left. At the time it was 50 degrees off while my left was 45. I had to have reconstructive surgery that year but I put it off till after football and I cheered half of the basketball season. It was tough being 16 and have to have hip surgery but that did not stop me at all. I recovered quite fast and I was back in sports a month ahead of the normal time.

I made my senior year cheer squad a week after I got off of crunches, with the doctors approval of course. I was 20 when my left started acting up so I had to have another reconstructive surgery. Dr Piehl did the surgery and all was smooth.

I am all better now with and do not need to have anymore surgery!! YAY!! I spend time now telling people about what I have and to make sure you get your child checked!! Thanks for letting me share my story 🙂 God bless





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Danielle

Danielle

I am 37 years old and was just recently diagnosed January 2016 with Hip Dysplasia and Osteoarthritis in my right hip. I have been suffering...

I am 37 years old and was just recently diagnosed January 2016 with Hip Dysplasia and Osteoarthritis in my right hip. I have been suffering with pain for the last 5 years since my daughter was born in 2010 but apparently was born with this congenital defect.

I was lucky to have made it through 32 years without pain. Although I did have a painless limp that many people would ask me about. I had no idea what they were talking about since I felt fine. It was really more embarrassing than anything else. After my daughter (second child) was born and the pain started, I just shrugged it off thinking it had something to do with childbirth. After 5 years passed and the pain was getting worse, I really couldn’t just ignore it anymore.

After all the ‘baby” was no longer a baby anymore. So I finally decided to go for the X-ray that told me exactly what’s been wrong with me all this time. I have to admit I freaked when I first heard the diagnosis. I kind of knew right away that it would mean surgery. I then went on my hunt for a good orthopedist and saw a couple of different doctors. The first one is a surgeon and he basically said that I either had to try to live with the pain or have the Total Hip Replacement surgery. Of course they always try to get younger people to hold off if possible because of the chance of needing to have a second Hip replacement later in life. I then went to another doctor for a second opinion who suggested the steroid injections. I had one and it was wonderful to be out of pain but unfortunately it only lasted about 5-6 weeks and here I am, back to square one.

I went back to the orthopedic surgeon because he is without a doubt the doctor I want to perform my surgery. I have heard so many great stories about him from people I know, he came highly recommended. He was very honest about all of the risks and what the recovery will be like and he doesn’t pressure you to make a decision. He doesn’t recommend getting too many of those injections though because of the increased risk of infection and to be honest, it’s not something I really want to have to do every couple of weeks.

So here I am at the point where I decide whether to continue living in pain or just suck it up and have the surgery. To be honest, my tolerance for the pain has definitely decreased now that I know how it is to live pain-free but I’m very leery of having such an invasive operation. I have never had surgery before, not even a C-section so this is quite frightening to me. I really have no issue with my age. I understand that I will most likely need to have another THR in the future. I would rather have a good quality of life now and not feel 87 at the age of 37. We are also planning a trip to Disney next year and I want to be able to enjoy that instead of hobbling around and not being able to keep up with my kids.
By writing this, I am hoping to make a connection with someone who is going through the same thing as me. I have great family and friends, a lot of support but nobody that truly can understand what this is like. I would also like to hear some success stories from people that have been through the Total Hip Replacement surgery.





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Darryl

Darryl

I am a 45 year old Male from England who was diagnosed with Hip Dysplasia 13 years ago. My symptoms began with lots of lower...

I am a 45 year old Male from England who was diagnosed with Hip Dysplasia 13 years ago. My symptoms began with lots of lower backache which I simply put down to playing too much Football (Soccer) which I had been playing since I was old enough to walk. My GP (Doctor) sent me for an X-Ray and when I went to see him to get the results I was totally amazed and shocked with what he had to say. I was expecting just a basic diagnosis of nothing severe, to my shock when he mentioned the condition I had never heard of it and obviously asked lots of questions.

He immediately informed me that I would need a total hip replacement but not for many years or at least not until it got to the stage where I was in too much pain to continue. During the past 13 years I have had numerous days and weeks where I am in pain and discomfort I guess like lots of other people on this website. I have never received any injections I only take mild painkillers when the discomfort gets too great.

Over the past 4 years I am noticing that I am having more flare ups than ever before. I am currently on my 12th Day of real discomfort in the thigh/knee joint. I am finding that driving is a major problem with this condition it really does aggravate the pain. I go to see my Dr every 12 months at my local hospital where I am always sent for an x-ray to see if there has been any change from the previous visit. I am always being advised that I am possibly too young for a THP as in England we are led to believe that the replacement will only last around 12-15 years.





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David Faustina

David Faustina

“In the dandelion field, the winds begin to blow as nature’s puff tosses wishes untold.” The first page in the story, A Butterfly’s Kiss begins...

“In the dandelion field, the winds begin to blow as nature’s puff tosses wishes untold.” The first page in the story, A Butterfly’s Kiss begins in the dandelion field. The choice to begin the story here was intentional and reminiscent of a time in my life where I felt powerful and alive. Can you remember the last time you held a dandelion in your hand? The wishes that started to fill your mind and the anxiety as you quickly had to pick one wish as you filled your chest with air and with one strong exhale the seedlings broke free from the dandelion and floated high into the air. The tiny white fluffs represented all your hopes and dreams of what that wish if granted, would mean to you in your life. It was exhilarating and filled with power because in that moment you could be and do anything that your heart desired. For many, the idea that wishes can come true soon disappears as life moves on. The tiny yet mighty voice gets softer as we grow until one day the voice can no longer be heard.

The image of the wind blowing the fluff into the air is illustrative of the many wishes that now cannot be told because the dandelions are taken hostage by the wind. In life, this seems to be the case all too often, as the winds of change blow our lives into directions we never anticipated and never wanted as a destination. Yet somehow, we all find ourselves in this predicament at one time or another.

A Butterfly’s Kiss is a story about life’s demand for change in our lives yet through it all, each one of us has the strength to come out strong on the other end of this change. A flick or a tail, a flutter of wings and the faith of a girl…even in times of darkness the light is only a kiss away.

I was given a story that demanded to be written and it all happened in a most unexpected and uninvited way, but such is life sometimes. Here is my story and for many, it may be like your story. It was the fall of 2015 and I had just hung the phone up after receiving a call to let me know that a child very special to me had been diagnosed with developmental dysplasia of the hip, commonly referred to as DDH. A simple search on Google will just about throw reasonable minds into an altered state of panic and paranoia. It becomes a cautionary tale if one is brave enough to instead search using the keyword “spica.” Quickly resorting to center my mind I knew therapy was in order and immediately sent my browser to Amazon. Back in a much more familiar place, I started looking for items that might help this child through the upcoming procedure and recovery period. I was shocked that Amazon, like me, had very little information on DDH except for a link to this chair-like contraption, which later proved to be very helpful. For many, I can imagine, news of a loved one or someone very close to you is given news of a health condition, naturally, we want to immediately gather as much information as possible. Unfortunately, unlike the days of the multi-volume encyclopedias, information is no longer secured by gatekeepers who authenticate its credibility. The information superhighway is now littered with self-proclaimed ‘medical doctors” whose only training comes in the form of too many hours spent on WebMD. Yet, intertwined we find credible and wholly reliable sources that provide the substance and information we need to become better informed and more open to being supportive to the loved ones experiencing an unknown condition. The hour was late as I stumbled upon the website for the International Hip Dysplasia Institute. The name alone signaled to me that this was the holy grail of information for DDH. Upon entering this site I immediately knew this was the real deal. I estimate that for the next six hours I clicked through what seemed like every page. If Dr. Price would oblige and confer, I think I could qualify and be known as David Faustina, IMD status after the amount of reading I did that night, and that is not internal medicine, I am a new breed known as internet medical doctor. I hope I never have to draw blood otherwise that is going to be a bad scene.

My experience coming to understand DDH is not one of a patient or even parent. I do not have a child of my own, but consider myself to have many children, including four beautiful nieces and four handsome young nephews, two even look like me, the nephews. I also was once a youth pastor and over the seven years in ministry had hundreds of kids in my care. I’ve sat beside youth who were hearing for the first time that their parents were no longer in love, I have shown up to the Principle’s office to support a youth who was being expelled. I have had to comfort students as they try to understand why they are in the hospital. Ministry was a lot of supporting and comforting students through grief, heartache, rejection and fear. Celebrating, high-fiving, and affirming students through accomplishments, graduations, and achievements. I learned very quickly that kids are resilient and adaptive, but require authenticity and presence and trust is not something they offer freely. I can remember a mentor of mine giving me words I still today remember. She departed this wisdom to me just as I was preparing to relocate to the San Francisco Bay Area to accept the ministry position. I had shared with her that I had been offered a position in ministry for a Lutheran Congregation in Northern California, it was a thriving congregation filled with families. I can remember asking her, how am I going to last in this job? I was a political scientist, not a theologian. I liked to argue policy not live out the golden rule. She stopped me as she spoke, “Obviously God has a bigger reason for your call so your job is not to question but to listen.” Then a final parting line, “and David, never talk to kids like they are kids. They see right through that.”

As I thought of how I could best support this child as her and her family walked through life with DDH I remembered the words of my mentor and remembered the experiences I had in ministry. I did not understand everything, but one thing I knew for certain, God had something bigger in store, and I am convinced now more than ever this to be true. The months following the procedure were difficult and life during the Spica is not something that should be taken lightly, but it appeared at least from my narrow view that a child is far more resilient than we give them credit. It was during the days of the spica that I would jump onto Facetime at least once a week and tell stories and share in laughter with this child. It became a highlight of the week, but not just for us, but also for my little gray cat who would come leaping up onto my lap when he would hear the laughter of the child. Out of these experiences, a story was born.

“Through the long-stemmed forest, a creature too flight, a little gray furball with the butterfly in sight.”

I wanted to do something that would help not only this child but all children and families who experience these circumstances in life. One evening last November I finally sat down and eight hours later I had the first draft completed of A Butterfly’s Kiss. It was raw and incomplete, but it was finally taking shape. My initial intention was to present this story as a gift to this young child. As I continued revising I sought out an illustrator and met a gentleman from Paris, Nicolas Lonprez. I shared with him my intention for the book and shared my personal story and he phoned back a day later and accepted the role of illustrator. He said he was so moved and felt called to work on this project. What little compensation I was able to offer, far below market rate, was acceptable to him because he too wanted to create something that would give children hope. Together we continued to work on the story and illustrations. The result has become a masterpiece where each page is a portrait of light and life. Countless other creative minds joined based on the concept and the story. Each one added something so beautiful that the end result is so much larger than I ever imagined.

My initial desire to write a book for a special child in my life has now visited and been made stronger by creatives spanning 3 continents, 5 countries and 5 states in the Union. A total of a dozen people have been involved in some small yet large way making this book a sign that hope has no boundaries and that although you may feel you are alone in this fearful time coping with DDH, you are not alone, there are people the world away that want you to know that the light is only a kiss away.

The book is intended for any child who is experiencing a time of confinement in their life. Whether confined by something physical like a cast or brace, or something psychological like fear, loneliness or grief, we all experience confinement in one form or another. A Butterfly’s Kiss is the heartwarming tale of a young girl finding hope amid life’s challenges. Change can be frightening, but it often brings new beginnings… just ask a butterfly!

One of my lines of the book is when Sir Butterfly finally meets Lady Faith and shares with her his experience.

Butterfly began, “Faith is your name and a remarkable thing, it can move mountains and is the source of our being. Your name has great meaning and in my life too, once ruled by darkness until light broke through. As the hard shell that trapped me started to crack, my life changed and I haven’t looked back. Slowly escaping from that dreadful hard home, my wings expanded and I no longer felt alone. A new body, stronger and bright, for I needed the dark times to appreciate the light. The time was important to prepare me you’ll see, heaven sent, a butterfly kiss, to you, from me.”

For the child who is or was in a spica cast or brace, this book will absolutely resonate. For the parent looking for a way to start a conversation about what is to come, I hope this book will be a resource you can use to spark that conversation. I truly believe this book is going to help children and families. I also want this book to help in bringing more information, research and possibly a cure to DDH. I also believe in the work of Dr. Price and the International Hip Dysplasia Institute and will be designating a portion of all proceeds from the sale of A Butterfly’s Kiss to be directed to this incredible organization.

To date, I have self-funded the creation of this book and am currently seeking help so I can finish the book. I am seeking support through a Kickstarter Campaign, where you can pre-purchase a copy which will allow me to complete the project and you to get your hands on the first edition due out this summer. Visit our Kickstarter here:  Kickstarter or visit www.abutterflyskiss.com for more information. My hope is that this book will help families, children and the Institute for many years to come.

A Butterfly’s Kiss: Faith has just come home from the children’s hospital, but she’s still far from well. Her world seems dark and dreary… but her faithful cat, Jasper, is determined to bring light back into her life. With the healing power of the butterfly and the wishes of dandelion fields, Jasper and Sir Butterfly embark with Faith on a journey towards hope.

A Butterfly’s Kiss is the heartwarming tale of a young girl finding hope amid life’s challenges. Change can be frightening, but it often brings new beginnings… just ask a butterfly!





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Deb’s Story

Deb’s Story

I was born October 21, 1949 to Dave and Thelma Moreen. My father, just out of the Navy, and my mother, a 20 year old...

I was born October 21, 1949 to Dave and Thelma Moreen. My father, just out of the Navy, and my mother, a 20 year old model, were living in an apartment in central Detroit. Dad was attending University of Detroit School of Law on the GI Bill. Mom stayed home with their new baby, Deborah. That’s me.

At about 9 months of age, I am told that I began to walk, only to be commented upon by Uncle Colin that I “walked like a sailor.” Mom and Dad had to agree. Something was wrong with their baby.

Without a penny to spare, my young parents could not afford to bring me to a costly doctor so Mom found that she could take me to Children’s Hospital  For 1 day every 6 weeks, Dr. W, a renowned physician specializing in Diseases and Injuries of the Spine and Extremities, donated his time for families like ours. Mom scheduled an appointment and, after 6 weeks, my parents and I met Dr. W for the first time. After being X-rayed, I was diagnosed as having Bilateral Congenital Hip Dysplasia. This could have been caused because I was born breach as, I am told, the doctors literally pulled my legs out first. (I was the first of 5 children born to Dave and Thelma and the only baby to have this condition. However, my only daughter, Molly, was born with Congenital Hip Dysplasia on the right side. That is another story which I will save for another time.)

Dr. W told my parents about the “Shriners Hospital for Crippled Children.” The goal of this hospital was to treat orthopedic injuries, diseases, and birth defects in children without charge. My parents met with the local representative and they encouraged my parents to leave me at their hospital for one year and they would treat me without cost to my family.  The only problem was that the Shriner’s Hospital was in Chicago, Illinois and Mom and Dad would not be able to visit because of the distance involved. Although the price was right, that was not an option as my Mother would not even consider being away from her baby for any amount of time. There had to be another way.

We returned to Children’s Hospital, which was a teaching hospital. Dr. W had an idea. It was 1951 and there was something new being done for babies like me. No longer were children having their hips fused and spending the rest of their lives with braces. Dr. W manually “set” my hips and put me in a full body spica cast.  Mom says I was anesthetized for the procedure. Even though I was so young, I remember the procedure when the cast was being applied. (I must have “come to” during that time.) I can still see (from my lying down position) a huge metal bowl painted white with a red trim containing a liquid in it and the long bandages being dipped in it. I watched the nurses helping the doctor wrap the wet cloth around my body. I was very much aware of NOT having my parents with me. I relive that feeling of being wheeled down the hospital hall on a gurney – watching the mint green walls go by, staring at that ugly ceiling. I can still smell that medicinal, antiseptic “hospital” smell. I was scared.

Mom says that shortly afterwards she was approached by an intern who was assisting in the procedure, (one of many medical students at Children’s). He took my parents aside and gave them some good advice. He said NOT to treat me as handicapped, but to let me crawl around and drag my casted body. If some of the cast wore out as a result, go buy some bandages at the drug store and reapply them herself. It was imperative that I not consider myself limited in any way. (My father relates that years later he met a family who had a child with the same condition. They did NOT give her free reign but rather, kept her in a swing. This person never exhibited any mobility nor thought of herself as anything but an invalid.) Dad says that they were told that I probably would never dance and would be wheel chair bound by the time I reached 45 years of age.

My childhood was normal. I ran, rode my bike, roller skated, and played as any young Michigan girl. Soon, I had 3 sisters and a brother…none of which had Congenital Hip Dysplasia. It wasn’t until I was 12 years old, in the 7th grade, when puberty kicked in. My hips were changing and I began experiencing pain when I engaged in any kind of sport or, even, walking more than a couple blocks.  At that time, my parents were living in Fowler, Indiana. Dad contacted Dr. W, who was still working in Michigan.

We drove to met with Dr. W. He remembered me and gave me a physical exam, took some X-rays and advised my parents to continue to let me grow. However, he suggested I NOT participate in Physical Education classes in the future. I am attaching the correspondence from that visit, where Dr. W says “if she learns to live within her own limit of activity that she can expect to live a normal life until probably in her late fifties or possibly her sixties.”

This is what happened after that.

  • I graduated from Purdue University in 1971 and lived on campus and walked to class.
  • Married Bill Beaton and moved to California. Began the first of many careers (usually desk jobs), including working in advertising agencies, law firms, the telecommunications industry, and most recently, starting a new chocolate truffles company, “1492 Chocolates” with my daughter in Colorado.
  • Experienced 3 natural births – 2 of which were 9 pound boys!
  • Had 5 Total Hip Arthroplasties, or THA. These surgical procedures involve replacing the acetabum and the femoral head.  The first two operations were done a year apart in 1982, 6 months after the birth of Alex, my third child. Most orthopedic surgeons I visited told me I was “too young” for the surgery because they did not know how long the hips would last. It was a new procedure, just recently developed in the early 1970s by Sir John Charnley, a British orthopedic surgeon, at Wrightington Hospital in Canada. Physicians did not know what would happen if, or when, a replaced hip would fail. They had been implanted in the elderly and the patient usually died before the hip wore out.
  • I pleaded my case to each and every orthopedic surgeon that I visited and finally, at the age of 33, I received my new hips.

These hips were done in Monterey, California at Community Hospital of the Monterey Peninsula. At the time, glue was being used. I remember the surgery as being many hours long, with medical staff dressed in something resembling hazmat suits. I was in the hospital 10 days. I could put weight on them immediately.

After the surgery, I was in need of a blood transfusion. This was the beginning of the AIDS crisis in America and I actually had to go back to the hospital at a later time to be tested for AIDS. It was all very secretive. I was given a number to use to book my appointment in their lab. My name was never used and was always referred to by that number. They notified me by phone as to the results. I was fine.

In 1993, these hips failed…first the right hip and then the left. I could tell because when I walked it felt like my transmission was slipping out of gear. That’s the only way to describe it. Then, it began to be painful. We lived in Tequesta, Florida at the time, and my surgeries were done (a year apart again) in Boynton Beach at Bethesda Hospital. It was my understanding that the glue had failed and had begun to destroy the existing bone. My socket had to be scraped out in order to insert a complete new prosthesis. My first set had lasted 11 years.

In 2007 I underwent Spinal fusion S-1 to L-3. This was necessary because my poor back took the brunt of my shallow hip sockets for the duration of my life and carried me through weight-gaining pregnancies. Eventually, it was just bone on bone. No problems with that now.

My 5th hip replacement/revision was done in October of 2012 and I am anticipating the other failed hip to be revised next spring. I scheduled appointments with two orthopedic surgeons rea that were available under my Kaiser Insurance plan.  Both surgeons balked at doing my “revision of a revision” because it would be unique and require special technique and a flange implant.  They referred me to an orthopedic specialist in Denver, a Dr. H. Dr. H’s business card touts that he is Board Certified as a physician who specializes in “Limb Preservation/Orthopedic Oncology/Complex Joint Problems.” (This was good news for me, with the added benefit that he treats people who have had cancer.  I have been a breast cancer survivor since 2011, undergoing bi-lateral mastectomies.)

Let me say one thing about Kaiser Insurance. Per their instructions, I saw two orthopedic surgeons in my “network,” each recommending the same group. This doctor is not only out of my network, but does not accept Kaiser Insurance. After a phone call to Kaiser, and supplying the necessary referrals, Kaiser agreed to pay 100% of my surgical costs for my upcoming surgery. I was scheduled to be admitted two weeks later.

In October 2012, I underwent hip surgery with Dr. H. I could not put full weight on that hip for a month, as the flange implanted needed to bond with my bones. I was told to imagine the flange as having like a “honey comb” surface that would meld with my hip socket.

Dr. H’s office works closely with The Limb Preservation Foundation, a non-profit 501c3, founded by Ross Wilkins, M.D., one of the original physicians in the office where Dr. H sees patients. This worthy enterprise’s goal is “to enhance the quality of life for those individuals facing limb-threatening conditions due to trauma, tumor or infection through research, patient assistance and educational programs.” Patients are treated free of charge with the highest degree of care. I cannot say enough good things about this Foundation. I cannot say enough good things about this worthy group of physicians. https://www.limbpreservation.org/

As of this date, I am doing very well. I will celebrate my 64th birthday soon. My daughter and I have opened a retail chocolate truffle shop in Historic Monument, Colorado. 1492 Chocolates is my latest re-invention of my life. I am pain free and walk without a limp. I can’t help but feel like an imposter “normal” woman. No casual acquaintance would know what I have experienced in and out of hospitals my entire life.  I thank God daily for the life I am leading and am thankful that babies born today with congenital hip dysplasia do NOT have to endure the spica casts and the life-long multiple surgeries. The non-profit International Hip Dysplasia Institute, (IHDI) could just be the answer to changing lives forever. Supported by the Git-R-Done Foundation and the Arnold Palmer Medical Center Foundation, in Orlando, Florida, the swaddling techniques, the Pavlik Harness, the support of the physicians in educating families gives us all hope for a better, healthier future.





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Debbie’s Story

Debbie’s Story

Hi my name is Debbie and I’m a 51 year old bilateral CHD survivor. I was diagnosed at 13 months old. I was admitted to...

Hi my name is Debbie and I’m a 51 year old bilateral CHD survivor. I was diagnosed at 13 months old. I was admitted to the hospital where I stayed for six weeks in traction. I had a ten pound weight attached to each leg. At the end of of the six weeks I was put into a frog plaster cast and released to go home.

Over the course of the next two years I went through several cast changes. It was eventually changed to a shorter cast which stopped about mid thigh before I was able to come out of it completely. After the cast was removed I then had to wear a splint that kept my legs in the same position the shorter cast I was in. All of that was done and over by the time I was about 3 1/2 years old.

The doctor told my parents my left hip had gone back into place just fine but my right hip was still slightly out. He could do surgery or my parents could wait and see if it went into place as I grew taller. He said there was a 90% chance it would. Because of all I had already been through and the 90% chance it would go in on its own my parents decided to wait.

As time passed my right hip became more painful. At age 11 I went to an orthopedic surgeon and the xrays showed my left hip was fine but my right one was still slightly out. My first surgery was scheduled. A small part of the socket was clipped away and the ball of my hip was moved over. Two pins were put in to hold it there but were removed a few weeks later and I was on crutches for about a year.

The pain was better but always remained.

As the years passed I would dig my crutches out and use them from time to time. By age thirty seven the pain had reached a point where I could no longer take it and I was using a wheelchair when going anywhere that required a lot of walking. I went to see a orthopedic surgeon and this time the xrays showed my hip socket (what little I have left) is mostly flat and not much, at all, is over the ball of my hip and I have arthritis.

The recommendation was to have a pelvic osteotomy. After much thought I decided to have the surgery. That was 15 years ago. For the first few years it helped some. I live in constant pain which I have always have but since the surgery have lost most of the use of my right leg. I can walk but not without the aide of either a cane or arm cuff crutch. When I go shopping I always use one of the store buggies you drive and if there isn’t one I don’t shop. I was declared totally disabled in 2000.

I have two grown children 21 and 28 and two grandchildren 1 and 3 years old and thank God their hips are just fine.





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Demelza

Demelza

Hello, I am 32 and I was diagnosed with hip dysplasia when I was 27 years old. I wanted to share a little about myself...

Hello, I am 32 and I was diagnosed with hip dysplasia when I was 27 years old. I wanted to share a little about myself and my experiences with this hip condition so far which hopefully others of you out there, going through the same thing will be able to identify with…

When I was born, the nurse checked my hips as per the routine procedure and found nothing, therefore I do not know whether I had this condition from birth or whether I developed it as a result of something else when I was a young child, e.g. swaddling or whatever else. All I do know is that for a long time (until my late twenties) I had no symptoms. I had always until then enjoyed a very active life, dancing, running and keeping fit. One of my most favourite things to do after a stressful day at work or on the weekend was to run and exercise at the gym. I loved the adrenaline and endorphins you would get from doing frequent high impact running and fitness, it made me feel wonderful and so energised.

One day I decided I would really like to train for a half-marathon, so I started to push myself a little more at the gym. I always stretched and warmed-up beforehand and built myself up from a slower pace to a faster one. I felt I did everything that I should have done to prevent injury, however, on one fateful day, everything changed for, little did I know what would happen and what it would mark the start of for me.

An acute shooting pain ran suddenly down the side of my right hip, followed by a feeling of it collapsing and not being able to take my weight without pain. I quickly stopped the treadmill machine and limped painfully off of it. I hobbled home, thinking at the time that I may have pulled a muscle. Stubbornly, I kept going to the gym for a few more weeks but the pain did not subside, and I started to get worried as I found I was unable to run without severe pain.

After about a month a went to my GP, he referred me for X ray, which at first only showed that there was some fluid building up around the joint and that it had become inflamed. I took Ibuprofen as suggested, but it didn’t work that well. I read up about bursitis and thought it might be that, trying out various heat pads that were supposed to draw out the liquid, which temporarily seemed to help, but I still couldn’t walk long distances or run… Increasingly, the pain got worse, more so at work from walking and standing a lot, I couldn’t conceive of walking a few miles into town, because I knew I would be limping and in pain and agony from it.
As the months, then years went on it became worse and worse, physiotherapy, strengthening exercises and painkillers helped only temporarily. I knew, this was not a permanent solution.

I then went back to my GP who referred me to the hospital for an MRI Scan. This was a scary experience in itself for me, as I am claustrophobic. However, I knew it had to be done so I closed my eyes and pretended I was somewhere else for 20 minutes or however long it was.

I then had a meeting with the surgeon. I fully expected the surgeon to say, something like; well you probably have torn a ligament, tendon injury, bursitis or something along those lines…. I was not prepared for words I would be about to hear. “You have hip dysplasia… the only way it can be corrected properly is through major PAO Hip surgery”. My jaw dropped, I was so shocked.

So I had my pre-op, scheduled the surgery and was ready to go (if a little terrified). A few days later, I found out I was pregnant. I then had to cancel which put a delay on my surgery. After my son was born I was given a date which was too close to my wedding, so then had to cancel again, finally when my son was aged 21 months I went ahead with it.

I was terrified, who would look after my son in those first few weeks? How would we manage, emotionally, financially? Would the surgery be successful? Would I have complications etc…? I tried to prepare as much as I could before the surgery, but I believe, nothing can ever prepare you fully. Luckily my parents agreed to look after my son for a month whilst I was recovering; they live miles away in Scotland so we would Skype every day, which was lovely. It was comforting to know that our son was in good hands and thoroughly enjoying himself, though we missed him lots.

On the morning of the day of my surgery, there were tears in my eyes as we dropped off our son at the child-minder’s as I knew it would be last time I would see my son before the surgery and that the next time for a while would be briefly whilst I was in hospital, after that I would have to wait several weeks before I could give him a big hug again.

The day of the surgery was surreal. I went in with my husband, I made a few jokes I think to cover my nerves. I then hugged him, said goodbye and waited alone in the surgical admissions unit. Various checks were made beforehand as usual, samples, blood-pressure etc., I waited until one of the analgesia team came to explain to me about how I would be put to sleep and pain control methods I would like to choose from. At this point I came over all faint, it became real… I was then later spoken to by another of the team who tried to put me at ease and the surgeon. I had to sign the consent form and was then brought into a small room by one of the analgesia team.

After that, I had to sit and have the epidural put in my back, I then lay down whilst a mask was put over my face. I can’t remember even falling asleep. All I then remember is waking up. I fought to wake up, as I was under that deep, I struggled to breathe. Probably partially due to,( as I learned later), the fact I lost 2 units of blood in surgery (and needed a further two transfused later) I also had low blood pressure. My hip was very painful upon waking; the epidural mostly numbed the wrong leg. So a member of the team kept pumping more and more pain relief through the epidural site until it was to an acceptable level on the operated leg.

The first night was the worst night, I couldn’t move at all. I was completely flat on my back and had to pretty much stay that way. I couldn’t move either leg initially. My parents came down the day after. At this point I was still very much relying on my self-administered pain relief pump. However, unfortunately to my dismay my pain relief started to get out of control…
However, I felt instantly happier, when my family walked through the door later. Seeing my parents, my husband and my son for a short while, helped to lift my spirits. My mum and dad brought round lots of magazines and a big basket of fruit, it was a comfort to see them and I got to hug and kiss my beautiful little nearly two year old boy… magic!

After my parents and son had gone to make the long trip back up to Scotland, my husband was with me, I started to writhe with pain. I am not one for screaming with pain; however the level was becoming unbearable. The nurse, asked, what score would you give out of 10 for pain. I said, 9. Unknowingly, she said are you sure? I said yes. Later that night, I begged to see the pain team. The nurse said they were in theatre and one would come through when finished. When one finally arrived, the answer to my pain was plain to see. Even though, I was administering myself pain relief, through the pump, it wasn’t going into my spine. Instead, it was leaking onto the bed, it had become disconnected!!

The lady from the pain team, reconnected it, but then spoke to her boss and agreed there is a slight risk of infection in doing so, so would have to swap it for a morphine based one, which would go through the cannula in my hand. This method was less effective for bone pain, though I started to feel much better than before.

The day after, I was becoming incredibly weak and drowsy, due to low blood count. I then needed to have 2 more units of blood transfused through the cannulas in my hands. The nurse, unfortunately didn’t tighten it up enough so blood went absolutely everywhere! The doctor then had to come by and put a different cannula in my arm and do it again…

After all that drama with the blood; which I can laugh about now. I finally, I started to feel a lot better and get a bit more colour in my face. Over the days the followed, I gradually started to move my legs slightly more, walk to the chair, with a frame, and then learn to use crutches, up and down the stairs. I was able to leave the hospital after a week.

I am now nearly 1 month post-op so early days… watch this space for an update on my progress and recovery. I hope my story so far helps some of you in some way, to understand more about what to expect. It is a major surgery and it is a long road, but we are warriors and we will get there!





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Demi

Demi

Seven years ago our daughter, Demi, was born with hip dysplasia. The doctor felt a ‘knock’ when he did the hip test on her after...

Seven years ago our daughter, Demi, was born with hip dysplasia. The doctor felt a ‘knock’ when he did the hip test on her after she was born. They told us that she’d have to wear a harness for a few months and gave us a name of a pediatric orthopaedist in town.

The day she was born I bought People magazine from the hospital gift shop because Demi Moore was on the cover and thought it would be a good keepsake for her since they had the same name. Coincidentally, also in that issue was the story of Wyatt Whitney that enlightened us on hip dysplasia. Seven years later, Demi is what is called a “flyer” for her cheer team (she’s the one they toss in the air), she’s a gymnast and a dancer with no signs of ever having HD.

She started the first 4 months of her life with her legs tied back in a harness that covered her whole body. Back then we questioned if she would have trouble walking, but thanks to the Wyatt Whitney story (in People) and the openness of the Whitneys to tell it, that brought us to the IHDI for information and support. You’d never know but for the pictures that she had hip dysplasia. Like every cause, disease, event or call to action, all you need is awareness.

The Whitneys and the IHDI gave us that and a whole lot more. We posted three pictures. Two are of her as an infant that you can clearly see how bad her HD was and the last is her doing a SPLIT! Thank you IHDI and Wyatt Whitney!





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Diana

Diana

I have a condition called hip dysplasia. I have hip dysplasia in both of my hips. At 46 years old I was able to get...

I have a condition called hip dysplasia. I have hip dysplasia in both of my hips. At 46 years old I was able to get a hip replacement on the left side. I did not know that I had hip dysplasia until I was thirty years old. It was a long time coming finding out what the actual problem was because as a baby my mom was concerned that there was a problem. She voiced her concerns to the doctors at the time of my birth. However it was never addressed it was never treated.  At 2 months old we Flew Over The Ocean to America. When we arrived here my mother also try to figure out what was wrong with my hips. Needless to say nothing had been diagnosed and nothing had been treated.As I Grew Older I was involved in sports and I was also wanting to be in ballet gymnastics and eventually I did do figure skating. In figure skating I was able to do most of the things that one does. But I was never able to advance and become a better figure skater because I was unable to move my hips certain directions. After that I went off to college and realize that that I was going to have a limp and a wattle probably for the rest of my life. The pain had not really came until I was roughly 22 years old. I did have a child at 19. And for some reason I had to have a cesarean section. The doctors were not aware of why they just decided that it was best to have a cesarean section. Slowly my knees and my ankle and my hip started to hurt but I muscle through it and kept doing what normal 20 year olds do… camping hiking biking and outdoor stuff and that’s when I noticed the pain getting worse.

At 27 I was pregnant again. My physician said that I was most likely going to have another cesarean section. Not because I had one before but because she said there is something wrong with your pelvis. I decided that I did not want to have a cesarean section. So I did not. And then I had another child at 29. I did not have a cesarean section then either. After that the pain was intense and much worse. I went to a chiropractor and a chiropractor noticed the way I was walking and decided that my back was probably not the issue. He took an x-ray of my hips they told me I’ve been having this problem my whole life. And that is when I found out I had hip dysplasia bilateral.The orthopedic physician I saw said that they could help me but I would have to go to a specialist and I probably would not have a total hip replacement but I would have to have some type of surgery to help with the socket. I decided I was not ready to have surgery at such a young age and decided to handle it with therapy and swimming and yoga. It worked out pretty well for about 7 years then I was pregnant again. And then I was pregnant again at 40. Needless to say I was not able to function quite as well as I would like to have had after my fifth child. So after my employment ended at my retail establishment where I was working I went back to school and then I was sitting quite a bit. This did not help the situation. My problems just got worse. So finally I did end up having a total hip replacement on my left side. Pain management was not the answer to my problems prior to the surgery. All that did was create depression and anxiety and an inability to feel not only the pain but the emotions that came along with the depression and caring for my children. So after the surgery I was excited to feel better. I did and at that time my partner moved in to help with the household chores the finances and the children. However that help came with a price.Because of my vulnerability and my inability to work I was a victim of domestic violence. After I was feeling better my partner was not happy with my ability to do things on my own and my mood changed from being dependent to independent. The abuse increased… and then the abuse became physical and I was pain free from four months after the surgery to approximately six months after the surgery when I was forced to defend myself and my right hip what’s had not been fixed had not been hurting but now was hurting just as bad as the left one was before I had the surgery. This made it very difficult to work and it made it difficult to concentrate again and as a result of all of this I am now facing foreclosure my van was repossessed I am unable to work and it is becoming more and more difficult to walk again. Some people think that you could just sit and have a job sitting is actually worse. The detective at the time of the sentencing of my partner who was convicted of assault told me that it is now time to step it up and get a job and just because you don’t have a car you can ride your bike to work.I added this because people do not understand how painful a hip is when it is displaced. The awareness needs to become more prevalent and when someone asks you what is wrong and you tell them it’s hip dysplasia… most people say oh isn’t that what dogs get?I am hoping that the future will be a little brighter and with all of these things happening I have found some very kind people to help and to guide me and to make sure that I am heard and that I am able to fix all the issues that I have two in my life and take care of my children. So please if you are in a situation where you feel like you are trapped because you are in so much pain and you are unable to walk and you are unable to communicate with your family or your friends about your situation keep trying and find someone to listen. You will be able to get through this it will get better.

And if you have children and or you are with children in a capacity where you notice that they have a problem walking and they are in pain. Just because their children doesn’t mean they don’t have pain. They need to be looked at and they also need to be heard.  If you ask a physician or someone that about your condition are your child’s condition or how you feel and you don’t feel comfortable with the answer keep trying keep asking. No one should have to live with this pain.

Prayers go out to all of you who are going through this. I am hoping that sooner than later I will be able to have this hip replace and recover in a more peaceful way. I am fortunate to have three older Sons who will be able to help me get through this and then I can finally lessen the burden on on them and I can be a better mother.





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Donna

Donna

Hi,I was born with hip dysplasia in my right hip, which wasn’t picked up until i started walking at 14 months old. I had surgery...

Hi,
I was born with hip dysplasia in my right hip, which wasn’t picked up until i started walking at 14 months old. I had surgery at 16 months old and had the metal work taken out 12 months later.

Growing up i took part in most sports activities at school, but i have a huge scar down the side of my right leg which i was always conscious about which made me hate wearing shorts. My pain started at the age of 17 when i was carrying my first child. I thought that it was the weight of the pregnancy that was causing the pain.

I went on to have another child at the age of 19 and by this point the pain was unbearable. After i had my baby i went to see a doctor and was sent for an x-ray. The x-ray showed that my hip joint had worn on the inside of the socket and the roof of the hip was shallow. I suffered for another 2 years in excruciating pain, taking a cocktail of pain killers and anti-inflammatory tablets and using a walking stick. This was one of the lowest points in my life.

I had 2 young children and struggled on a daily basis with simple chores and activities. Eventually my consultant decided that a PAO would be the best option and would hopefully give me between 10-20 years before i would need a total hip replacement. I had the surgery in 2000 when i was 21 years old. The surgery took 6 hours and i was in hospital for 10 days.

I don’t remember much of the first couple of days as they gave me morphine for the pain and i was completely out of it. I was told by my consultant that i would take between 12-18 months to fully recover from the surgery. However my recovery was a lot quicker than expected.

The first 3 months i was on crutches and could not bare any weight on my hip. After that i gradually started to put weight on my hip and went down to one crutch. Within 9 months i was fully recovered and totally pain free. The PAO surgery was a success for me and it has given me 12 years without any pain. I am now 35 and i started with pain again around 2 years ago. It has got gradually worse and i have also started getting pain in my knee on the same leg.

I have been back to see a consultant a few weeks ago. He sent me for an arthrogram on my hip which was not a pleasant experience but i got a steroid injection at the same time to help my pain. The injection worked well for a few days and has taken the edge off the pain in my hip but it has not completely gone. I have also started wearing a raise in my shoe as my leg is 3cm shorter than the other.

I am now having a lot of pain and burning sensation in my knee and i am waiting for an appointment for a scan. I think the years of limping has affected my knee, i’m hoping that there will be no serious damage. Has anyone else had problems with there knee as well as their hip?





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Elizabeth Blake

Elizabeth Blake

I was born with a congenital dislocated hip but this was not picked up at birth. My grandma comment i was not crawling right as...

I was born with a congenital dislocated hip but this was not picked up at birth. My grandma comment i was not crawling right as a child, to keep her happy my mum took me to the GP. He inturn to keep her happy sent me to the hospital where at 13 1/2 months it was disgnosed. Fortunaltey it is only my left hip but surgery was required to re build my hip. I dont remember it causing me any problems growing up as a child but when i look back a family photos i notice my left leg never flexed like the right did. I was followed up until the age of 18 then discharged.
I went on to work in the orthopaedic industry as a marketeer for a medical devices company. As time went on i noticed i was getting less and less range of movement from my hip and by my mid thirties i was starting to adapt my activities to accomadte this. I learnt new ways to put on socks and different stretch excercises after gym sessions as i couldnt do things theway other people did.
After a particularly active holiday one of the orthopaedic surgerons i was working with noticed me limping and agreed to have a look at my hip. The X ray didnt look too bad but the range of motion was definatly reduced. He advised painkillers but said this was only a matter of time before i would need a hip replacement. He siad it would be the effect on my life and the activities i wanted to do that would make me decide rasther than pain.I managed another few years with painkillers and reducing activites, i stopped running and could only do a 6 mile dog walk. At 43 i decided enough was enough as i was getting pain towards the end of a day also and went for the Hip replacement.
I chose my surgeon carefully as one who specialises in young hips and evantually has a minihip with ceramic on ceramic bearing. I was in hospital for 4 days and came home with crutches. At the time i thought the recovery was very slow and initially worroed how long it would be beofre i got a good nights sleep and could return to work. I did not have a lot of pain but tired easiley after the shortest of walks. When i look back at the whole experience i realsie how quick my recovery was really. I was back on a stationart bike at 4 weeks post op, all be it for a few moments only. At 6 weeks i was riding it for 15 miles. I am now 3 months post op and doing really well. I have returned to all my daily activities and am back at the gym, most of the time i forget i have had a hip replacement.
It was a scary prospect to face hip replacement at 43 but i really havent looked back. If i was to give any one advice it would be choose your surgeon carefully, there are implants, like MiniHip, developed specifically for younger patients today. The other piece of advice i would give is follow what the physiotharapist tells you. The excercises are tricky to start with but it really does benefit you to stick with it. If the physio says to try and do less not more, as mine did follow what they say, its only a few weeks of inactivity which in the long run really is a price worth paying.





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Ema

Ema

Hi, I am 44 and only been diagnosed with hip dysplasia. It make so much sense through my life. I was brought up by my...

Hi, I am 44 and only been diagnosed with hip dysplasia. It make so much sense through my life. I was brought up by my grandmother and from an early age I was constantly aching tired and generally unwell.

My mum said I was a wingy baby when I was born. when I got to 12 years of age I had a real passion for dance and this is when y aches and pains escalted, I was taken the docs and I was put in Ibuprofen the big pink tablets daily, It kind of eased it but the more active I was the more I ached. When I was 15 I went to see a specialist and he said infront of my nan its in her head, xrays were done but it was in my head. He could not see anything. So off i was sent on my way.

I had a career in dance became a teacher and got into a dance company, al the time I was having terrible aches and pains, having operations for my bones in knees etc. fast forward years of medication physio, tens therapy EVERYTHING. then I was pregnant at 22 I was in so much pain I was admitted to the hospital at 34 weeks, I could not move. I had to have help to the toilet. at 38 weeks my daughter was born, That put me off having anymore kids.

I was still going to the doctors being referred and they found I had osteo-arthritis in my lower back but still no diagnosis of hip dysplasia. I was 24. I decided that I did not want anymore kids and fought for sterilization. A BLESSING. I was living in Sandbach cheshire uk at the time and was referred to have cryotherapy freezing of the facet joints in my lower back, i had this three times but still no diagnosis, For years I would go to the doctors and they diagnosed me with all sorts, One was Fybromyalgia, I was fuming and said NO your missing something, so I kept fighting I wanted answers I was doing my own research as I have a brain.

In 2014 I had a high tibial osteotomy in my left leg and it was due to the dis-alignment of my hips, but STILL NO DIAGNOSIS. until I went to my doctors about swelling fingers and the aches. she referred me to the reumatologist and after he examined me he said you need an MRI on your hips this was the first time EVER I had MRI, they found I had a labral tear discreetly in my hip socket, so he referred me to the orthopeadics, (in wales) he looked at my case and referred me to a Top specialist (in England) He urgently asked to see me the next day and sent me for a xray and then it came out that it was hip dysplasia. From here I am either going to have the tear repaired or hip replaced.

I am confident that now I can get on with life happy. What I have remembered the most is how people made me feel, I was a liar I was lazy and that my illness was not in my partners life plan. If this story has hit a cord with you, remember this you are the one that knows your body, if you have a child you know your child. You fight for what is right.





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Emily

Emily

I am a dancer, aerialist, yoga and Pilates instructor and was diagnosed with Hip Dysplasia at age 29 after 10 years of experiencing un-diagnosed pain....

I am a dancer, aerialist, yoga and Pilates instructor and was diagnosed with Hip Dysplasia at age 29 after 10 years of experiencing un-diagnosed pain. It basically shattered my entire career and income stream for a number of years. I underwent a Periacetabular Osteotomy and the extensive recovery process required.

After months of rehab and a cautious but dedicated training regiment, I recovered to almost full potential and was back to performing in under a year. Every story is unique, but I would like to provide some hope for athletes out there who are facing this diagnosis. I wrote a book (Anatomy Riot) that has been helpful to people on the Adult Hip Dysplasia Facebook group and am happy to chat with anyone who feels compelled to reach out. Learn more about me, my book and get contact info at www.movementinspired.com

You are likely on this site for a reason and my heart goes out to you!





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Emily

Emily

Hi guys, I’m Emily and I would like to share my story with hip dysplasia. I was diagnosed in the first week of august 2015...

Hi guys, I’m Emily and I would like to share my story with hip dysplasia.

I was diagnosed in the first week of august 2015 when I was 12 years old. I have hip dysplasia in both sides of my hip. When i was diagnosed it was the day before we moved to the UK so I couldn’t start treatment in my old town. when we had a short interview with the school deputy headteacher my parents told them about my resent diagnosis and gave them a document from the doctor that diagnosed me that I couldn’t do high impact sports for a year. My PE teachers didn’t seem to care about it and they still don’t but i’ll get back to that later.

During that year my PE teacher didn’t like the fact I wasn’t participating in lessons fully and the next school year when I had the same teacher again they congratulated me on joining in more which I realize was fairly rude of them as I can’t do anything about what a doctor told me NOT to do.

The next few years of school even in present time is a roller coaster of getting annoyed at PE teachers and the entire school because unless you have a note, a visible disability or have learning difficulties the school doesn’t care if you can’t do something and expects you to things that on a bad pain day you just can’t be asked to do it, but PE in my school is the absolute worst.

Last week I had PE as my lesson and we were playing badminton which as I believe most of you know is a impact sport and when I sat down to rest my hip after it started to hurt, they made me get back up and wouldn’t let me sit back down again. This week my hip is feeling the consequences of my PE teachers and because I’m 15 now i just make fun of them for being so ignorant about things like this even though the school knows about it and I have told them about my diagnosis but the only thing they can say is ” Emily, you better get that checked out”, and I’m all like well nah its not like I haven’t told you twice this month that there is something not right with my hip.

Now back to the school, sometimes I have lessons on the first floor to then go up to the 3rd floor to then almost get trampled going to the ground floor for lunch to then have last lesson on the 3rd floor again. The thing is the school has lifts for people who have difficulty getting up the stairs which is all well and nice however 80% of the time that’s me and I’m not allowed to use them because like before I don’t have a note or I don’t have a visible disability, almost like INVISIBLE DISABILITIES never existed and that annoys me the most, the school is like if you can get to school without crutches or have a note you can go up and down three flights of stairs all day long.
In my old school you would be the friends of either the dinner lady or the PE teachers because to get to all other places you needed to climb stairs, even to get to the first aid room and that school was amazing, the school I’m in now if you haven’t seen it yet not so much.

Now no more school talk. My mom has Hip dysplasia too, and the obvious stuff she tells me when I tell her that my hips are hurting is the same no matter how much you tell her, mainly the stuff she was told by a DIFFERENT doctor. She says things like “lose weight and that will help” and I’m like “I know mom but if that was so easy you would be thin too wouldn’t you” not like that’s annoying at all she also says “you need to walk more” I have actually said this “My school is a literal treadmill”.

I will update you guys if you want that is if things change or I just want to rant about how the school is most likely not going to change when we get a new headteacher in January and when I go into 6th Form.





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Emma

Emma

Hello!I am 29 and was diagnosed with congenital dislocation of the hip at 6 months, but was advised I needed to wait until I was...

Hello!
I am 29 and was diagnosed with congenital dislocation of the hip at 6 months, but was advised I needed to wait until I was 15 months before they could operate. I had a salters osteotomy on my left hip followed by a hip spicer cast. They needed to reshape the socket to fit the femur.

My parents were told that I would need to have further surgery as a teenager due to my leg indifference and after yearly reviews, at 12 years old I headed back to hospital for an operation on my knee to drill the growth plates in my longer leg.

I am still over a centimeter out and walk with a limp, but they can not operate unless there is a greater indifference.
I have always had restricted movement in my left hip and could never cross my legs and there is only about 50-60% movement, which is getting less year by year. Tying my laces is hard and bringing my knee to my chest is impossible.

I love sports and was very lucky to lead an active childhood. I played netball, rode horses, danced and kept up with most of my friends. I did have to adapt – ballet was always tough doing the movements so they helped me change them. I couldn’t sit on the floor at school so they let me sit on a chair. Running has always been an issue and at 20 years I was advised by the orthopaedic consultant to cut my sport back and not do any high impact sports.

It was hard to accept, but I have slowed down at sports and turned to hiking to try and keep active and go to the gym. As the years have gone on I have noticed I am getting more pain in my joint. It is frustrating wanting to keep active and to keep weight off, without doing further damage. I have to be careful not to overexert at the gym or walking, however I have been so lucky to be able to do what I have done and I will always be grateful for the amazing surgeons that helped me.

At 29 I don’t know what the future holds, I am worried about it deteriorating. Friends have advised doing yoga to keep it simple, but I can’t do half the movements so I just get flustered and embarrassed!! Cycling is okay gently, but I have noticed spin classes aren’t good. Swimming it is then! 🙂

It would be great to know if anyone else has similar experiences or has any advice?!

Thank you X





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Emma B’s Story

Emma B’s Story

Brent and I went to the appointment excited and nervous. We met with the nurse who gave me all kinds of pamphlets, prenatal vitamins, and...

Brent and I went to the appointment excited and nervous. We met with the nurse who gave me all kinds of pamphlets, prenatal vitamins, and a folder of what to do and what not to do. Brent and I briefly met with our doctor prior to our first ultrasound. At that time Brent made a joke saying, “ok doc, tell me there is only one baby”. Keep in mind, we had never met this doctor prior to this day. The doctor took us to a small room with a kind of, sort of outdated ultrasound machine. I remember laying on the examining table and Brent leaning on the counter in front of me. The doctor proceeded with the exam and told us that we were having twins. Brent said he had some thought and had grab hold of the counter. My response of course was “holy cow” and started crying. The doctor said she would give us a few moments but would like to take us to another room that had another ultrasound machine that could look at the babies in more detail. I got myself together and we both met her in the other room. The doctor again proceeded with another exam. I remember seeing the movement on the screen with the two babies. Brent, of course jokingly said to the doctor that there better not be another baby. The doctor looked at Brent and looked at me and said, “Yes, there is one more”. We went from having two babies to three babies all in a matter of minutes. No fertility, no drugs, nada! All natural. I started to cry again. I also felt bad for the doctor. She went from not knowing us to knowing us in a matter of an hour. She further explained to us that we all should be “cautiously optimistic” during this time and that she could follow the babies up to a point, I believe to 20 weeks. We would then need to move to a doctor at hospital that specialized in high risk for the remainder of the pregnancy.

We left the doctor’s office thinking “ok, we are going to have to go from my little Nissan Sentra to a big ol’ Suburban, a house to accommodate us, no job because we wouldn’t be able to afford daycare, and who the heck is going to help us with three babies”. A lot to digest and we haven’t even eaten lunch. So, I became a weekly guest to my OB/GYN due to the fact I was considered high risk. On week 14, I went in to visit my doctor and we found out that the two babies sharing the same placenta no longer had heart beats. The single baby was fine, heart beat great, and everything else I heard was blah, blah, blah like the teacher from Charlie Brown. I remember seating in the room all by myself and thinking, “this is going to be ok” however it wasn’t. I reminded what Brent’s dad said to me, “God is not going to give you more than you cannot handle”. I kept thinking that. I went out to the car and began crying and couldn’t stop. I called Brent, where he was on the way to  a company meeting. He immediately turned around and came home. That day was probably one of the worst days I have ever experienced. Brent was great about consoling and he was a much needed distraction. To this day, I have a hard time listening to the song by Rascal Flatts, “Bless the Broken Road”. This song was playing on the radio that day and the words are so powerful but meaningful.

Week 17 we were scheduled for a thorough ultra sound examination at the Women’s Services that does genetic counseling. We met with a wonderful woman who explained the different tests, how the tests score, and our options. Brent and I still laugh about that day because we honestly did not have a clue about any of the procedures or the extent of the people that were involved. The U/S tech started the exam like the multiple other exams that we have had. She told us that we were having a girl which is always exciting to hear about the sex of the baby. She further explained to us that the organs, head, eyes, etc… looked great. The tech finally looked over the limbs and began to reposition my belly and the probe. You could tell she was interested in one area of the baby. The tech left the room and came back with not only the woman who explained the procedures to us but also another tech, a student, and a doctor. We had approximately 7-10 people in the room including us. Everyone was so interested in the ultrasound monitor that I couldn’t see what they were looking at. I actually got a little upset because I could not see my own child. Basically, what they found they did not really have an answer for us. They told us that our child would have a “syndrome” but they were not sure of what type of syndrome. The doctor explained that Emma would be born with both her legs “reversed”. We hadn’t had a clue what they were talking about. Brent and I both asked several questions however, no one had answers. We went home and researched everything we could. Brent and I met with a Pediatric Orthopedic Surgeon who later became someone far more important in our lives that we could ever imagine. Unfortunately, at that time, no could tell us the extent of Emma’s legs or anything. The Pediatric Orthopedic Surgeon told us to be “cautiously optimistic” that we would have more answers once she is physically here and they could actually physically see her. Talk about another blow to the stomach. And that phrase, “cautiously optimistic”, I honestly hated those two words. I use to say that they taught those two words in medical school and nothing else.

November 22, 2005, 3 ½ weeks from our original due date, Emma Catharine was born. She was born with bilateral hip dysplasia and her right knee dislocated, going in the opposite direction. Emma was immediately given a splint to keep her knee straight and this is where the multiple visits to the doctor’s office began. At age 3 months, Emma under went three surgeries to correct both hips and her knee. On the right knee, they actually had to go in and cut part of the muscle to release it in order for her knee to position itself correctly. She then wore a spica cast for 6 weeks to help set her knee, femur head (ball) and socket. I never thought I would see the day that they took the cast off. From then on, she had to wear a brace in the evening while she was sleeping. I cannot tell you how many braces we went through (measured and fitted) because at that point she was beginning to grow like a weed. She soon figured how to maneuver her legs out of the brace while sleeping and turn over on her stomach to sleep. We began physical therapy in order to strengthen her right leg/knee and to stimulate the growth of the hip bone and socket. It took Emma a lot longer to do more of the motor skills that a normal baby from 6-24 months could do. She actually did not seat up by herself until she was 9 months old. Emma did more of the “military crawl” versus crawling on all fours. She would stand holding on to the couch or table but would not put a lot of pressure on her right leg. Emma was given a walker with wheels to learn to walk. And let me tell you, with the walker, she would chase the dog around the house, laughing, and carrying on like a normal child. She did not know anything different and neither did we. She was a happy baby.

And at age 22 months, she began to walk on her own. She still needed therapy to strengthen her right leg/knee. At the time, she was still having difficulty to walk up and down the stairs, running, skipping, jumping etc… She relied on her left leg a lot for balance. Emma still cannot sit “kris kross applesauce” however, she does not let that affect her. Every once in a while, she talks about her “boo boo” (scars) and tells us a story about them. I know she won’t be a track star nor will she be in the Olympics for track and field however, I do know that she is very happy little girl who loves to dance.

I can honestly say that if it wasn’t for our doctor and therapists, I wouldn’t have known what to do. They were very honest with us and gave us hope. They did not give us any false pretenses especially during her procedure. I can now say that I believe in the 2 words, “cautiously optimistic”. And I believe in families helping families.

Update 2012:
In August 2011, just before entering Kindergarten, she had another procedure. They adjusted her femur head (ball) and socket slightly up by placing 2 pins and a bracket for approximately 7 months. In March 2012, they went back and removed the pins and bracket. Currently, she is doing really well from the procedure and they are monitoring the placement of her right hip/socket every 6 months. Emma was able to take the pins and bracket (in a sterile closed bag) into her Kindergarten class for show and tell which, according, to Emma and her friends, was “cool”. Emma is now 7 years old and in 1st grade. She enjoys biking, swimming, tennis, and collecting seashells.

Update 2013
January 2013, we went for our 6 month checkup and the femur head (ball) slightly away from the socket. We are currently doing exercises in the evening to strengthen the muscle in her right hip/thigh. June, we will revisit the possibility that another procedure may take place.





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Emma-Lee’s Story

Emma-Lee’s Story

First off, I want to thank each and every one of you for this site, for spreading the word, for giving our children a chance!!...

First off, I want to thank each and every one of you for this site, for spreading the word, for giving our children a chance!!

When my husband Matt and I took Emma to her wellness visit, her pediatrician said everything was “perfect”. We had mentioned that Emma’s hips were popping and clicking, and she said it was “normal”. It is just what happens when babies are growing. So we left the office, confident that our baby girl was, as the Dr. said, “perfect”. Yeah well we learned pretty quick, our pediatrician messed up big time. Matt kept telling me “something just isn’t right”. I said not to worry, the Dr. said she is perfectly healthy.

His worries started to worry me and we ended up making another appointment. I wasn’t worried, as I didn’t even even know what hip dysplasia was. When I gave birth, they made us watch a million videos on SIDS and Shaken Baby Syndrome, not one piece of literature in the stacks of paperwork I brought home stating anything about hip dysplasia.  So we get to the Dr. and she tells us something isn’t right, I want you to go see a pediatric orthopedic as soon as possible. “WHAT IF WE NEVER NOTICED IT????” That was what we were thinking, since Emma was just there less than a month ago and every time she did the leg checks she was good to go. There is no way my child developed this condition in less than a month!!!! She referred us to the Women and Children’s Hospital.

We went to the hospital and within minutes had her x-ray done. We were called back into the room and Dr. F simply said this “She has hip dysplasia, she needs to be put in a cast, we can do it as early as next week”. THAT WAS IT! So here we are completely blindsided, though we did do research before we met with Dr. F. He did not explain ANYTHING to us. It was like if I had to get a cavity filled, just very vague.

At this point I am a puddle. After we left the hospital, we went to the park to try and relax with Emma and all I could do was cry and think! ALOT! I told my husband, we need a second opinion, maybe a third. This is our baby we are talking about here!!! Our first baby who is so beautiful and perfect. So I literally googled a Dr. and found the University Medical Center. We made an appointment for a few days later (we were blessed to get in so fast) and we also made a back-up appointment at another hospital. Both about the same distance from home.

We met with Emma’s amazing team on the 15th at University Hospital, and that is how we found Dr. C. He explained everything so well, answered every question, made us feel comfortable, I had faith in this guy and so did my husband and we didn’t think twice about it. Emma needed a closed reduction and spica cast for 12 weeks, but we all know, there is no guarantee. WE FOUND OUR DR. TO FIX OUR BABY!!!! Dr. C moved to from Canada because the main hospital is in the process of opening a children’s hospital and he wanted to play a major role. His credentials astounded us! He worked/studied at one of the top 3 pediatric hospitals. We were scheduled for surgery only a couple weeks later. It all happened that fast!!!

In the mean time playing the waiting game, I found https://www.facebook.com/groups/Hiptoddlers/…….a DDH Group on Facebook. I just randomly chose it and started to learn more about my babies condition. It was the best thing I could have done for myself, my husband, and for Emma. We met amazing mommies who have all been in our shoes, who are still going through it, all types of stories and surgeries, which I must admit was scary at first because of worst case scenarios I seen. Through this group I was able to obtain priceless information, new friends, and help with endless support and love. I was given a spica table, a cast cooler, a bean bag chair, moleskin tape, toys, clothes…..all from perfect strangers. We took trips to Canada to get these items, just so happy to have help!!! It’s just the 3 of us. No family. This is it, but it’s perfect as long as I have my daughter and my husband.

The surgery date came, we drove up the night before since she had to be there at 6:30 a.m. I was worried about her not being able to have a bottle after 1:00 a.m., as we were starting to get into a sleeping routine finally LOL. She was perfect! Woke up happy like always. We got to the hospital and signed in, sitting there about to just hide in the corner and cry. We all went into the pre-op room, and the whole time I kept thinking, why my baby? Why this beautiful, precious, perfect little angel who was sent to me at the perfect time in my life. (I lost my mother in August and if I was not pregnant, who knows where I would be now. Emma-Lee saved me from myself) The anesthesiologist came in and explained everything, we chose not to go back with her as we were recommended how hard it is on the parents. We trusted these guys so we let her go. She was totally fine with it, busy playing with a toy 🙂 We were warned the hardest part was watching them take your baby, but the staff and Emma were so awesome I only cried a few tears and was OKAY!

What seemed like 20 minutes even though it was about 2 hours total, the Dr. came out and we were very nervous as they were not 100% sure that when they did the closed reduction and injected the dye of the outcome. He said it went perfect! She had a bilateral closed reduction and he wanted to do an MRI to make sure all was well. We were then called back to see her after her cast and surgery, and again, I thought I would just flip. NOPE! I was fine and so was my husband. Emma slowly woke up, didn’t even cry, and was smiling in minutes. We are so blessed we got through the hard part. We were then transferred to a room that we had to share with another child who was driving us nuts because Emma wanted to sleep and the boy and his guests were very loud. I asked if there was any way we didn’t have to stay the night as only one parent could be in the room, that wasn’t going to happen with us, and the noise was loud as we were directly across from the nurses desks.

A few hours later Dr. C came in and told us the MRI looked perfect, that Emma was the “poster child” for DDH and that he was so happy with the outcome that we could leave! We stayed the night at the Ronald McDonald house the night before and then again the day she had her surgery. I had already picked up a loaner car seat while Emma and her daddy were getting the MRI done. I could not believe that they let us leave!!! They gave us a few prescriptions for Tylenol and ibuprofen. She didn’t need anything after surgery so I didn’t think she would even need that. We have never given her any medicine except eye drops when she was a month old. They also gave us a prescription for Vicodin! I was like, why? They said since we drove in from Buffalo, they wanted us to take it with us just in case. So I filled the Tylenol and ibuprofen, just in case.

We got back to the Ronald McDonald house around 5 p.m. We got all this done in less than 12 hours!!!! AMAZING! Emma did great, only cried when she was hungry. We even went to breakfast the next morning with one of my husband’s friends and his friend’s little girl. Emma was perfect. She loves her new car seat as it sits up high and she can see everything 🙂

Since we have been home it is like nothing happened. I thought she would flip out having her cast on as she was using her feet for everything, even to hold her bottle LOL. So far, we have been doing more than awesome. Emma loves her spica table, she is the same baby she was before her cast. Her daddy got her a toy that goes on the floor. You lay them on their belly and they can use their hands to spin and grab things. She was spinning around and around and loving it! I believe in strength in numbers. ALL MY FELLOW “HIP” MOMS, thank you! Gina Jay, thank you for answering all my calls when we were gone. It was all good news every time! Thank you to friends for support and most of all THANK YOU DR. C FOR DOING AN AMAZING JOB!!!!

Last but not least, we know that their can be more casting, more problems that may arise, but the love and positivity all around us has allowed us to get this far with no problems at all!!! Even our first poop diaper was a breeze LOL. To all you moms out there who are about to go through this, trust me (I am not the most optimistic person, my better half carries that trait lol) TRUST in your Dr. If not, find a new one. TRUST that this is temporary. TRUST that all of our children are stronger than we are. To my fellow “hip” moms, as Bob Marley says it best “Don’t worry about a thing, ‘Cause every little thing gonna be all right. ”

Peace and Love- Sara, Matt, and baby Emma-Lee <3





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Emma’s Story

Emma’s Story

Emma was my first born and was breech. My doctor recommended a c-section at 39 weeks, when by ultrasound, we could tell she would be...

Emma was my first born and was breech. My doctor recommended a c-section at 39 weeks, when by ultrasound, we could tell she would be a difficult delivery. When her pediatrician paid me a visit later that afternoon, he informed me that both of her hips “clicked” – actually, they were both freely moving out of the socket. He said that an orthopedic surgeon would be visiting me later and that Emma would be fitted for a harness. I was devastated. He informed me that the key to positive results is to diagnose early…luckily they had.

By Friday morning, Emma was wearing her Pavlik Harness. We were told not to remove it at all. I had to wash around it and change her onesie one section at a time. When we went in for an ultrasound at two weeks (her first ultrasound) it was evident that her hips were still clicking and the Pavlik would need to stay on for at least four more weeks.

At six weeks, the orthopedic surgeon could not get either hip to click at all (and he really manipulated her little legs!). He recommended that she wear the harness for four more weeks. Last Tuesday (week 10) her second ultrasound showed no movement (clicking) and that she had “normal” hips. On Thursday, the orthopedic surgeon let us finally take the harness off. We will be visiting him next month (14 weeks) and then following up periodically until she turns one.

The surgeon said that the two most important things about hip dysplasia are: diagnosing early and persistence in wearing the harness (24/7). There is hope!





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Esmé Kelly

Esmé Kelly

Hi! I am Michelle, Owner of UK based ‘Esmé & Frog – Spica Clothing’, and more importantly Esmé’s Mum! Esmé is an IVF baby (ICSI)...

Hi! I am Michelle, Owner of UK based ‘Esmé & Frog – Spica Clothing’, and more importantly Esmé’s Mum!

Esmé is an IVF baby (ICSI) we tried for 10 years to have a child and were so blessed when the Ivf worked on the first cycle!

At 26 weeks I lost all my fluid and Esmé was born on Boxing Day at 34 weeks. She panicked us when she stopped breathing shortly after birth but was fine after antibiotics and a week in NICU. We were told she may need physio for her legs later on. Her legs were all over the place!!

And at the time we were more concerned with her heart and her weight.
And just getting her home!!!

At her 6 week check our doctor commented on her extra fold and we were referred to orthopaedics where she was fitted with a Pavlik Harness.

After only 2 weeks the Pavlik Harness was abandoned.

We were then referred to Great Ormond Street Hospital where we were told Esmé would need a closed reduction. I was in total shock as we had been told at Esmé’s last scan at our local hospital that they would probably just try the Pavlik Harness again!

So we got ourselves prepared for the op. Tried to move as we were up on the 2nd floor with no lift but to no avail and brought a new buggy, high chair and went through Steps Charity to get a car seat.
I joined the hippy baby group and tried to buy oversized clothes that Esmé would be able to wear.

Esmé had her op and it was horrendous. We were distraught. It was a truly horrible experience- we felt as though we had only just got her and now we had a situation in which we could loose her! At only 5 months old. All seemed well. Esmé had 3 months in the cast but 2 weeks out and her leg didn’t seem right so we scheduled an early X-Ray. The closed at failed.

She had come out of the cast with such long legs.

Esmé had to teach herself to sit up again, to hold her own weight and by the Summer was coasting and crawling but in the August she had her open reduction. We had got ourselves into a more suitable home with ground floor access ready for this op.

Esmé had an open reduction and a femoral oestonomy on our wedding anniversary and it went well! (Medically) but Esmé was much more distressed this time. We wish we had opted for the mild sedative as she was so panicked whilst having the anesthesia that she suffered night terrors for a month after. She was on morphine and then we had to wean her off of the morphine which was hard work! She was so much happier at home.

It was at this point I put her in a romper I had made and it fit! I quickly whipped up a load for her and decided to make them available to other mums too! They have poppers for nappy change and now I solely make spica clothing! My company is called Esmé & Frog. I’m on Facebook & instagram /esmeandfrog and we ship our spica clothing all over the world.

I thoroughly enjoy making spica clothing and love talking to the other parents about their experiences and being of help where I can!

At her 6 week review the x-ray looked good and the femoral head was finally forming so now we are waiting to be seen again in May to see where we go from here!

Esmé is happy and walking with her walker. We just pray that this is the end of it all now and our little miracle will be walking soon!

To view our spica clothing please visit us:

Website: https://www.esmeandfrog.com/

Instagram: https://www.instagram.com/esmeandfrog/

Update: August 6th, 2019: We have since found out that Esmé has a chromosome disorder. A microduplication of chromosome 16p13.11 and will require further operations on her hip & leg.





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Ethan

Ethan

Hello my name is Ethan Welton. I am 18 years old and was diagnosed with hip dysplasia when I was 16 years old. As a...

Hello my name is Ethan Welton. I am 18 years old and was diagnosed with hip dysplasia when I was 16 years old.

As a kid I played sports every single day with no pain what so ever. I had no signs or symptoms of hip dysplasia until my 7th grade school year. I started walking with a small limp. As time went by my limp got bigger and more noticeable. No sooner then that the pain came. It was bearable for about a year or so. After that I could only walk about 100 yards without having to rest my right leg. It felt like bone on bone sharp pain at times and others it just felt like my hip socket was very stiff.

I went to my regular family doctor and he said it was growing pains and that I would eventually grow out of it. I persisted to my parents it was something more and they decided to take me to a specialist at Riley Children’s Hospital. I was diagnosed there with hip dysplasia but it was determined that I was fully grown and couldn’t have the surgery there. They had to send me to IU Methodist Hospital. Once I was there I had more x-rays. This time it got a little more serious. I had a severe case in my right hip and a minor case in my left. We had to do the surgery as soon as possible and the closest date was a week later 3 days after my 17th birthday. This devastated me one day I had no idea what hip dysplasia even was and the next I was having surgery for it.

The surgery was successful I just had to spend 3 months in a wheel chair. This moment in my life changed me. Since that day I have committed myself to helping people. I am currently going to college to become a surgical nurse. One day I plan to assist in hip dysplasia surgeries, and spread awareness.
Thank you for reading my story and please comment if there is anything my story can do to help you.
-Ethan Welton





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Fay

Fay

Hey everyone, I’m a 23 years old girl from middle-east. I was an active child and faced no serious injury or pain in my childhood....

Hey everyone, I’m a 23 years old girl from middle-east. I was an active child and faced no serious injury or pain in my childhood. But things changed in my 18 birthday, we went out hiking and as it was for me to always be ahead of the group I took my place, but as we were coming back I started to feel a severe pain in my right hip but I ignored it and went on. The day after that I was unable to go to school, I was in pre-university class so my mom thought it might be the stress of my final exams.

Anyway, we went to an orthopedist but he said it’s nothing and I was completely pain free after that for almost a year.
In the winter, the pain came back and we went to see some of top orthopedists in my country and they all agreed in me having hip dysplasia on both hips and needing PAO surgery! The shock and the grief for me was unbearable cause I’m the type of person who HATES to be in need of any help, and the idea of being on crutches for 3-4 months just sound like the world coming to an end to me! So I decided to forget all about it, and it worked 4 years for me, I continued to workout and dance and I was pain free and happy…

But things changed exactly last year, it was a snowy night, and I went out with my siblings for snow fighting…by the time I got back home I realized the pain is back! I had a week in pain again and I found out I should give up workout! Again I was mentally broken but this time I knew there’s no other choice but the surgery!! So I visited my doctor and planned my surgery for Aug 17th,the struggles and stress I faced before my surgery was HUGE, I overthinked about every detail, especially the fact that I will be in need of others help in the easiest yet most private chores!!

Anyway I did the surgery, they told me it took 7 hours, and my doctor said it was way harder than he thought it might be! I was on morphine for I guess 2 days and had no pain in my hip, but I felt nauseous and was unable to eat anything so they cut the morphine and started giving me pain killers instead. I was afraid to get rid of morphine because of the fear of pain, but it was nonsense as I felt no pain after the morphine too.
The only pain I had was in the venflon place on my wrist, it took me 2 days to make the nurses believe they should put it on my other hand and then I was finally relieved!! Though the mark is still on my wrist after 5 months!!

I was in hospital for a week and started to walk with a walker 2 days after the surgery (I only went to wc and back). The time in hospital was so boring especially because I couldn’t go to sleep just lying on my back! The days after getting back home was hard but I could feel that I got better day by day.
I’ve visited my doctor regularly after that, and the last time I saw him he said it seems like the surgery was a failure! He also said I should do the PAO surgery on my left hip this summer, and if I was still in pain on my right side he will do the hip replacement surgery for me… . I got sad when I heard it, but now I know the sadness and anxiety do no good to me so I just hope that things get better after my left hip surgery…

I wanted to know if there’s anyone here who had a hip replacement surgery and ask whether it worked well for them or not? Also feel free to contact me if you’re in the same situation and need someone to talk to! Thanks for reading my story. Wish you the best of luck in your own journey.





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Francesca’s Story

Francesca’s Story

Francesca was born on a Summer morning. Once our baby was in our room, it all become so real. We were spending time bonding with...

Francesca was born on a Summer morning. Once our baby was in our room, it all become so real. We were spending time bonding with our new baby when her pediatrician walks into the room, asks our guests to please step out in the hallway, and our hearts sink. It’s at that moment that you know there is something wrong with your perfect baby. Nothing will erase that moment from my mind.

Francesca was diagnosed with DDH in both hips that very morning. She was to be “triple diapered” until a proper fitting Pavlic Harness could be ordered, in Preemie size. Both hips were dislocated at the time. While they didn’t cause her any discomfort they needed to be put properly in place. Francesca faithfully wore the harness from 5 days old to 3 months old. As new parents it was sad to see our daughter immobile, but yet it became normal to us. We were told we could then wean her out, her hips were “looking good”. After many x-rays and ultrasounds, we were excited to have our baby back. We weaned her and were so excited to finally see some progression in her gross motor skills. She had learned to roll over and sit up with assistance! We were so proud of her.

At 6 months old, Francesca had a follow up appointment with the orthopedic doctor, and after her round of x-rays, we waited, and waited for the doctor to come to our room. Something was not right. The doctor walked in and explained that her hips “looked bad” again, this time the left being worse than the right. However, this required more treatment. We were scheduled for a surgery, while they were hoping for a closed reduction, we were prepared for the very real fact that an open reduction may be needed. Nothing could have shocked us more. Our perfect baby was going to need surgery.

At 9 months old Francesca had a closed reduction done, and was placed in a Spica cast. She did fine, considering that she was suffering from RSV. She was in the cast for 10 weeks total. While in the cast she learned to “scoot” on her back to where she wanted to go. She could roll from her tummy to her back and seemed to be comfortable with her new situation. Not looking forward to her being put under again, we were excited for the cast to be removed. At just shy of 12 months her Spica was removed, and she was put into a Pavlic Harness again. According to the doctor, her hips were now “textbook perfect” and we should be done with treatments. As we slowly weaned her out of her brace, we were again overjoyed at seeing our daughter finally able to sit. The first time my girl was able to sit was at 13 months old. She started to army crawl at 15 months, and was finally walking at 16 months old.

We were excited for her 4 month follow up with her orthopedic doctor. After xrays, they suggested an MRI. Of course we were worried. We went ahead and got it done. We waited for the doctors response. We were floored to hear that the closed reduction and spica, followed by the Pavlic harness only fixed her right hip. Her left was still dislocated, lacking a true socket, and would need further treatment.

During this time we moved and were told to find a new orthopedic doctor in our new city and state. We did right away. At 18 months our stomachs dropped once again. After x-rays and a new doctor visit, they suggested surgery. However, since it is a new doctor he wants to wait and see her progression over the next 6 months. We have her follow up appointment at 24 months, and sure enough, her hip is not better, but worse. The right is fine, the left is almost without a socket. We are scheduled for a pelvic osteotomy. As parents we were devastated. She could walk, run, jump, she was fully potty trained. We had to face choosing when to do the surgery. In the summer? In the winter? When is a good time to choose for your “big” 2 year old to not walk?

At 25 months we are preparing for the surgery when we are hit with yet another bomb shell, at her pre op appointment with her pediatrician, they hear a heart murmur that has never been there before. After a cardiologist visit we are told that Francesca has IHSS, ASD, and HCM. We decide to wait on her heart and go ahead with her hips. Francesca is excited as we pull into the hospital for our “sleep over”. She had the surgery, all went well with the exception of the pelvis breaking completely and needing 2 pins to fix it. She was put into her second Spica cast. Poor thing at 2 years old, fully potty trained… now unable to move on her own. We spent 2 nights and 3 days at the hospital, dealing with her pain and learning (again) to care for a child in a Spica cast. Another specialized car seat, more diapers and depends, and the pain.

It isn’t recommended, however Francesca quickly learned to roll over, scoot, crawl and even walk and jump in her Spica. We had many x-rays to watch her healing. She was doing well, better than expected. After 2 months it was removed. She was scared, but excited. For this removal they did not sedate her, rather cut it off while she was awake. She started walking that very day!

She had a follow up and again we are being told that it is “text book perfect”. We were able to schedule her to have the pins removed. About a month later she had her 4th hip surgery. Again the fears rush in, being a parent. She pulled through just fine and we went home the same day! She had some pain, but was very happy to be able to stay at home this time. The orthopedic doctor said that everything looks so good that we don’t have to return for 6 months! We haven’t gone this long without seeing the orthopedic team since she was born!

We will see from here, however we are hopeful that after all of the “devices” used to fix our daughter, that she is finally able to lead a normal life. Francesca is now 3 years old, she has been in a Pavlic Harness for 6 months, and a Spica cast for another 5 months. 11 months total, nearly ONE THIRD of her life has been spent restricted, immobile. But as first time parents, it all seemed very normal to us! Francesca has a little sister, born with perfect hips. We didn’t realize how much care it took with Francesca, because you just do it… without thinking about how “hard” it is to have a baby that isn’t “normal”. Francesca and her sister took their “first steps” together, after her second Spica cast was removed. It was heart wrenching, beautiful, and I wouldn’t change that moment.

Despite our worries Francesca walks with only a mild limp. She is physically able to do everything a “normal” 3 year old would be able to, with one exception. She cannot walk up and down stairs. But that will come. Since then she has had her first dance class and did wonderful! Thinking back we were so worried that she would never walk, or walk normally, let alone be able to jump, dance, run and play with other kids her age. It was a long road, and I hope that this is the end of her hip surgeries and our journey with DDH, but I wouldn’t change a thing. She is a perfect girl and looking at her you would never know that she had any issues. After this 6 month follow up we will be able to just follow up with the orthopedic doctor every year until she is done growing. We are hoping for the best, as always prepared for the worst.

Now that Francesca’s hip seems to be fixed, we can focus on her heart and her upcoming open heart surgeries.

Update – 2011

Franceca was in for a check up and is nearly 100% “textbook” after her osteotomy, which is fantastic!





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Frankie

Frankie

Hello All I am 23 years old and I was diagnosed with Clicky Hip (Hip displasia) when I was 3 weeks old I was put...

Hello All

I am 23 years old and I was diagnosed with Clicky Hip (Hip displasia) when I was 3 weeks old I was put in a cast for 3 months to help the bone sort of repair its-self. Unfortunately 16 years down the line I started to feel in a lot of pain when walking and getting cramp in my left hip when standing. I went to my GP to see if there was anything they could give me for my pain and he prescribed me with an anti-inflammatory, I also had tests to see if it could be what my Dad has which is ankylosing spondylitis. The test results said I was clear for this but it was laying dormant and anything could trigger this. I took the anti-inflammatory these but they done nothing for the pain. After another couple of years once I had finished college I had moved and was in more and more pain everyday. I had to do something about this.

I had a search up online for my symptoms and stated I had Clicky hip when I was born and it came up with Hip dysplasia. Once I found out the name of it I researched this to see what it was. Once I had done this I knew this is what I had. I then booked myself in to see my new doctor and see what they could do for this. I had tests and x-rays to make sure this is what I had and the outcome was Hip dysplasia in my left hip. My GP referred me to have a six week coarse of physio to see if we could build the muscle up around the bones to stop some of the pain but this only made it worse. I then lost heart in getting it sorted as my GP said this is all they could do or it would be a hip replacement which they wouldn’t do now because of my age.

I researched more after 2 years as I was determined there was something I could do. I found online an operation called the PAO (Periacetabular Osteotomy) I have looked in to this operation inside out and was very interested in getting this done. I then went back to my doctor to see if there was any chance in me receiving this. They referred me to a consultant that specialised in this region and I had more x-rays and scans. Once they had a talk with me about the operation and what they can do they referred me to a surgeon in London who specialised in this operation.

I asked all the questions I had and got all the answers I needed. At the end of the consultation he asked me if I wanted to be put on the list for the PAO. I said yes as I have wanted this for a long time. I got a letter 3 weeks later confirming I was put on the list and I called the hospital to see how long the wait would be they told me it looked like October but they wanted to talk to the surgeon and a manager to see if they could get an earlier date. On the 25th April 2016 I got a call and they said my operation day is 26th May 2016. I had a Month to get ready. I was so overwhelmed and shocked as to how quick they have fit me in. I am now scared and excited at the same time as these 3 weeks are going to go very quickly.

I just wanted to know before I do this has anyone had this operation and has this made any difference? All the reviews I have read are amazing results and I just wanted to know if anyone had this a few years ago and what the effect is now. I want to know that once I have children I will be able to run around and do activities with them.

Thank you





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Gabriella’s Story

Gabriella’s Story

Although I prepared for my baby’s arrival for months, nothing in my prenatal visits, mother-to-be emails, or What to Expect When You’re Expecting book prepared...

Although I prepared for my baby’s arrival for months, nothing in my prenatal visits, mother-to-be emails, or What to Expect When You’re Expecting book prepared me for having a daughter with hip dysplasia. During the routine pediatrician exam shortly after her birth, the doctor noted that Gabriella had a “slight click” in her left hip. He said he would schedule a follow-up appointment at the local radiologist’s office if the click was still present at her one week-old appointment. One week later, there was still a click.

In the two weeks that followed waiting on her ultrasound, I thought very little about her hip. The doctor previously mentioned that often the hormone Relaxin remains in the infant’s system for a brief period after birth and could be to blame for the click. My husband and I bundled her up in early March for a trip to see the radiologist. My worry was minor compared to the anxiety I felt over her being past her due date. The nurse called her name, and we went to the room where the doctor pushed and pulled on her small legs and tiny hips. Then, in a very matter of fact tone, told me my first-born daughter had bilateral congenital dysplasia of the hip (bilateral CDH). Not only was I shocked, the burning sensation of frustration, confusion, anger and disappointment simultaneously welled up inside of me. No one, not one person, in the entire gamut of medical professionals who had spoken with me in the last 8 months had even vaguely mentioned “hip dysplasia” to me. Why not? Why didn’t I know this was a possibility, but yet I am forced to confront it?

In all my fantasies of holding a perfect little baby, not one of them contained a picture of a Pavlik Harness. But at 3 weeks old, the physician’s assistant placed my daughter in one.

The diagnosis of CDH had been confirmed by the head pediatric orthopedic surgeon at the hospital; my daughter had mild dysplasia of her right hip, and moderate to severe dysplasia of her left. When she was fitted and placed in the harness, I cried uncontrollably. I was certain her diagnosis was a direct result of something I had done. After all, I was her mother. I carried her, I nourished her, I rocked her. I had not had dysplasia as an infant, and she was not born breech. Nothing made sense to me. But the reality remained that this condition can affect the children of even the best of mothers. Hip dysplasia is a problem with the formation of the hip joint occurring mostly commonly in first born girls – first born girls just like mine.

Since Gabriella had CDH, she had to wear the Pavlik Harness (which we referred to as her “bungee jumping suit” for other children who asked what it was) twenty-four hours a day, seven days a week in an effort to correct the angle of her hip and deepen her hip socket, the acetabulum. The acetabulum index, or AI, became a focal point for my husband and me. The PA wanted the AI to increase to 63°, an angle number considered in the normal or acceptable range following treatment. Our expectation was that after a few weeks of remaining in the harness, the socket would deepen, the AI would increase, and the harness would be removed.

In fact, the harness was removed and replaced with a foam Rhino brace shortly before she turned 3 months old. A Rhino brace would now allow for Gabriella to return to normal bathing, and the brace fit over her clothes instead of underneath. While it looked like she was wearing a huge foam diaper, a dress slightly larger than she needed made the brace hardly noticeable. While I didn’t mind if anyone saw the brace, I ached when others gawked at her as if she were defective. On the contrary, she was growing like a weed and never seemed to notice her brace. She smiled, cooed and played like every other baby her age. The only adjustment was learning to sleep in the Rhino instead of the harness.

The adjustments as parents were much harder than anything our daughter felt. We learned how to choose clothes that fit, to answer questions of curious strangers, to pray more often, and to find the cheapest gas stations on the 200 mile one-way trip to the doctor. We learned our way around the hospital, and visits became routine. During the bi-weekly appointments for adjustments to her harness and repeat ultrasounds, her hips appeared to progress well. While the right hip had reached normal range, her left was farther behind. The percent coverage of the femoral head increased from 25 to 50 on the left side, putting it in the normal range. However, the AI was still at 58 and needed to be 63. That initial frustration from the very first visit returned. Gabriella needed to remain in the Rhino brace as a last resort before considering surgery as a treatment option.

The surgery the doctor referred to as a possibility at her next appointment was not something we wanted to hear about. Gabriella was only 13 weeks old. The next pieces of information fell on my deaf ears as I slightly when numb. My husband explained it to me later in these basic terms. The brace appeared to no longer be working, and according to the X-ray, a psuedo-acetabellum was forming on the left side. The PA said she would give the information to the head pediatric orthopedic surgeon, but Gabriella would most likely need an open or closed reduction and a spica cast for 3 months. Due to the distance being prohibitive for a quick return visit, she said she would call us in a day or two to let us know the doctor’s decision.

The phone call was not what we had hoped for during those two days. We thought she had been progressing so well and after being in a Pavlik harness for 3 months, she should be fine. We began praying fervently and asking God to heal her, completely or through using surgery. Our meeting with the surgeon was set for June 1st, and the arthrogram followed by closed or open reduction, for June 2nd. The reduction is closed if the surgeon can maneuver the hip into the socket, and open if an incision is required at the top of the thigh to cut ligaments and then move the hip into place. We requested that the X-rays be repeated on the 1st, and then we met with another surgeon. He viewed her X-ray and said had we not told him it was the left hip, he would not have known. He continued by saying based on her physical exam, he felt no subluxation and no dislocation of the hip. Then we talked to the head surgeon. He said based on her history and X-rays alone, he was 90% certain she needed a reduction surgery and spica cast. However, after his exam, his certainty of a cast was 60%, but that neither an ultrasound nor X-ray was capable of showing the femoral head at her young age of four months. Thus, he would perform the arthrogram and if the hip was not stable, he would continue with reduction surgery so she would only be under anesthesia once. He left the room for my husband and me to discuss whether to go forward. I had complete peace about doing the procedure. I knew in my heart God had healed her.

The next morning we headed to the hospital. She stayed fast asleep until time for her procedure. We put her little surgical gown on her as we answered questions, and then I had to hand my daughter to the nurse at 10:00 a.m. for anesthesia. A tube was put down her throat, and she was put on a ventilator. Her small body had to be totally paralyzed while the surgeon injected contrast allowing a clear view of the femoral head. I must say here that the hardest thing I have ever done in my life to date is give my little girl to a nurse, trusting God that she will come back exactly the same while beating back the mental battles of the risks, the surgery, and the potential cast. The surgeon did promise that he would talk to us immediately after the arthrogram to let us know whether the hip required surgery and a cast.

A very long 40 minutes later, he came out and sat down in front of us. He simply stated, “It’s perfect. There is nothing I can or need to do for her. The hip is exactly where it should be.” Of course, I burst into tears realizing that God had given us the miracle for our daughter that we had asked of Him. We had already determined in our hearts that, in facing our giant as parents, we would praise Him if he healed her, and we would still praise Him if he healed her using surgery.

Regardless of what you believe in or do not believe in, this story is a reality for my husband, for me, but most of all, my daughter. She continued to wear the Rhino brace only at night until February 22, 2010, eleven days after her 1st birthday. However, she has been walking since she was 10 ½ months old, and nothing slows her down. She runs, jumps and plays like any child who has not had hip dysplasia. I am so thankful for the treatment she received by her pediatrician, her PA and her surgeon. Whether by harness, brace or a spica, if necessary, hip dysplasia can be treated successfully if caught early. My hope is that each of us will take part in educating the public, supporting other parents and children, and raising awareness of hip dysplasia, for the benefit of all children who will run, jump and play one day soon.





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Gina Jay

Gina Jay

Gina Jay is an author, advocate, mother, wife, and creator of the fundraising/community organization, One Hip World. Gina’s entrance into the world of hip dysplasia...

Gina Jay is an author, advocate, mother, wife, and creator of the fundraising/community organization, One Hip World. Gina’s entrance into the world of hip dysplasia was a rough one. Her daughter, Mia had a severe case of hip dysplasia and they endured much hardship. But through it all Gina became an outstanding advocate, a voice for those affected by hip dysplasia.

Here is Gina’s Story:

Before hip dysplasia (and still, to this day), our lives were incredibly beautiful, and incredibly challenging!  Our daughter, Mia is our ‘miracle’ in many ways.  My husband Michael and I were told that we could not have children.  For the first 16 years of our marriage, we lived our lives believing that God had simply said, ‘no’.  While it was hard, we did our best to persevere in faith, and trust His plan for us.  Then, just before I turned 40, after having lost a good bit of weight, God said, “Okay, now.”  And, gave us our girl!

Our challenges began right away, since Mia was always a very fussy child.  At birth, and for the first full year of her life, she had pretty severe torticollis.  We were thrown into the world of pain medicines and we were shown the correct ways to massage her to try to help her neck muscles ‘straighten up’….still, she suffered.  Around 8 months of age, while her torticollis was still going strong, she began vocalizing two important words, “legs, ouch”.  Every day I would call her pediatrician’s office saying something was wrong, every night, Mia and I would pace the floor for hours at a time while she agonized.  I would take her into the doctor’s office weekly telling them that “something was wrong”.  I was told, “it’s growing pains, and it’ll pass”.  At one year of age, just as they were beginning to talk about surgery to correct her torticollis, her neck suddenly straightened. (Thank you, God!) She didn’t need surgery for that!

My husband and I noticed that she seemed to not want to be ‘mobile’.  She wouldn’t use her legs much at all!  Again, many, many calls to the doctors, and we were told that “children tend to focus on one area at a time, and since Mia’s vocal skills were so good, that clearly she is focused on those, more than crawling, walking, etc.”  I could not make them understand that she wasn’t displaying a lack of interest in being mobile, but that something seemed to be stopping her….physically.  Finally, at 13 months old, she began to crawl.  It was a very awkward movement, and I knew right away that it was ‘different’.  More phone calls and doctors’ visits ensued.  “She’s fine, you worry too much.”

In the meantime, our nights were filled with screams of agony and pacing the floor for hours on end trying to comfort her.  It was exhausting, not just physically from the lack of sleep, but mentally and spiritually as well.  I can’t think of anything worse than watching your child suffer so tremendously, and feeling helpless to help her.  One thing we as parents know is that when they suffer, we do too.  Mia finally took her first steps at 17 months with assistance, and walked unassisted at 21 months old.  When Mia finally walked, her steps were very ‘deliberate’, and very awkward.  She would ‘swing’ her left leg forward in order to move it out in front of her; there was no “natural, flowing” movement as in a normal walk.  When she stood, her back was arched, a lot.  There was a distinct curvature to her back…we now know this is called ‘swayback’.

Five pediatricians (one of whom was the Head of Pediatrics for a rather large insurance group) saw Mia throughout this process of phone calls and visits.  At 28 months of age, when I finally took her to the ER and sort of flipped out on them…lol…..they finally did an x-ray, and we had our diagnosis.

To know that despite our best efforts, that our daughter’s dysplasia was missed is, yes, heart wrenching.  As a parent, you immediately internalize it and blame yourself.  “I should have tried harder….I should have yelled louder.”  Know now, that you cannot be held accountable for that which you did not know.  Beating yourself up will only deter you from your current mission….and, there is a fight at hand.  However, knowing now what we didn’t know then, we can see and understand how it was missed.

There are two main contributing factors as to why this was not discovered. First, Mia’s dysplasia was so severe, that she actually appeared “A symmetrical” (equal) on both sides.  This was only because both of her hips were equally ‘messed up’.  The second reason boils all the way down to lack of research and awareness.  Had there been more research over the past 60 years, we would know so much more now!!!! And, because hip dysplasia has not been focused on for so long, the pediatricians who are so VERY important to all parents (let’s face it, our pediatricians are our first line of defense against EVERYTHING!), are completely unsure of what to look for.  We need them to know!

It was Children’s at Egleston Pediatric Hospital emergency department who referred us to Pediatric Orthopedics of Atlanta.  After a couple of months and several consultations, we received what was one of the greatest blessings in our hip journey.  Enter, Dr. John Heflin.  He was just starting with this practice, and he was nothing short of a gift straight from God.  Being so confused and disheartened and anxious, this man entered our lives with love, compassion, wisdom and expertise.  I shudder to even think of how our journey would have been without him.  Having a surgeon who ‘hears you’…listens, responds, comforts, teaches and walks with you is so very, very important.  If you are an hd parent, search out a doctor you can relate to and feel comfortable with…if you are a doctor, please remember how critical you, your expertise and your compassion are to us, and know that you are loved and appreciated.

Mia’s treatments for her hip dysplasia began two months after her diagnosis.  In August of 2011 she underwent her first surgery, an ‘open reduction, Pemberton osteotomy with femoral shortening.’  She wore her first spica for approx. 6 weeks, when we had to take her back into surgery to address both a reaction to the liner of her cast, as well as a pressure point ulcer which was forming on her spine.  Her cast needed to be changed, and so in we went, and she wore the second cast for another 6 weeks or so.  After approximately a month of being out of spica, we taught Mia to crawl, stand, walk and potty train a second time.  Just when she was mastering these tasks again, surgery time was once again upon us.

In March 2012, we went in for her third surgery.  Same procedure but now it was time to correct her left side. This surgery brought with it some extra, extremely overwhelming challenges.  This was the surgery left our daughter paralyzed and we almost lost her completely.  I hesitated to include these details, because I didn’t want to frighten anyone.  Please, PLEASE know that each child is different.  Your child’s hip dysplasia may or may not be as severe as our Mia’s, and you may or may not face similar challenges.

Mia’s severity is somewhat uncommon.  I decided to include these details for one reason, a friend, and someone I admire very much, Adrian, the Director of Larry the Cable Guy’s Git-R-Done Foundation, said this to me once, “you have to tell them, Gina….knowledge is power.  Even when it’s scary knowledge, its still power.”  And, he was so right!  You can’t fight an enemy you don’t know.  Hip Dysplasia is an enemy that almost seems to metamorphasize….changing as it goes.  It has a way of throwing curve balls and delivering setbacks.

One of the biggest frustrations in the battle of hip dysplasia, is the “wait and see”….there is a LOT of this!  “Wait to see what the body does to heal itself…. wait to see if the ‘angles’ get better, wait to see if it will “correct itself” with the brace and so on.

During her second surgery, Dr. Heflin was faced with a very upsetting decision.  Because Mia’s left femur had drifted up more, and was now in her rib cage, and because he had exhausted all chances to pull her leg down far enough to get it into the new hip socket, he had to either leave it out permanently, knowing the pain and quality of life she would have, OR “take out her left leg”.  To do this, he had to cut ‘everything’….muscles, ligaments, tendons, all of it. He chose to ‘take out her left leg’….intentionally paralyzing her temporarily, so that he could get the leg in, and knowing that in time the nerves would come back.  He truly believed in his decision.  We truly believe that God was guiding him in his decisions and his surgical expertise.  Dr. Heflin made a difficult decision, but one with Mia’s best interest at heart, and one that we are grateful for.  Who knows what would’ve happened had he chosen the other option.  He braced us for years of potential paralysis.  All of ‘Team Mia’ sprang into prayer action….and, we know they were heard. On the morning of day 6, she moved her big toe, paralysis gone.

On day two, post-surgery is when we almost lost her.  Though she had not lost much blood in this surgery, suddenly, her vitals began to spiral, and before I knew it, doctors and nurses were running about.  She required an immediate transfusion to save her, and I’ve never prayed before the way I did during those few moments.  “I don’t care if she can’t walk (paralysis didn’t leave until the 6th day), just leave her with me.”  It was during this time that I thought of everyone who fights…. everyone who hurts, every frightened child and parent.  I vowed, “no more.”  Never again would a Mommy or Daddy stand beside their child’s hospital bed crying like that, frightened like that, helpless like that.  No more.

A month or two after Mia’s diagnosis I was desperate understand her disease but was unable to find anything on the web not related to dogs. I did, eventually find, the International Hip Dysplasia Institute.  Through the initial call I met and immediately loved Susan Pappas & Dr. Charles Price.  I asked, quite simply, “What can we do to help.”  Dr. Price explained the mission and vision of the IHDI, and the overwhelming need for more research and awareness. Research costs money, it’s a fact of life.  That is why in 2011 I decided to start One Hip World.

I believe God wanted One Hip World to accomplish several things.  1) It would bring the hip dysplasia community together so that those who fight didn’t feel so alone.  2)  It would raise awareness.  3)  It would encourage those who fight by empowering them with a way to fight back!  One Hip World encourages everyone to ‘fight back’!  We do that through fundraising.  Bake sales, car washes, 5K’s, you name it and THEY have organized them and made it happen!  In less than 2 years One Hip World has raised over $41,000 for further research and awareness.  Each and every member, of which there are thousands, choosing to step up and help themselves and others!  Taking back control of their lives, and helping to uncover the mysteries that are hip dysplasia.  The more light you shine on something, the less frightening and intimidating it becomes.  Once you can see it for what it is, you can find a way to counter attack.   It is such a privilege to share the “battlefield” that is hip dysplasia with such an incredible group of people.

It was also rather early on after the diagnosis, that my best “hip” friend and now “sister of the heart”, Julie Beattie came into our lives.  Julie and I firmly believe that God put us together.  From our first “chat” we became immediate friends and felt connected.  Julie’s daughter, Abbey is an hd fighter as well.  Julie and I were frustrated by the lack of resources available to assist in explain to our daughters what was happening to them. We found other ‘character’ books to read our girls, “___ goes to the hospital”, sorts of things.  Again, God spoke up and said, ‘write a book’.  Knowing absolutely NOTHING about writing a book and being very quick to want to say ‘no’, God gave me a title, and a bunch of words, and I started writing them all down.  I called Julie, she immediately jumped in with “elaborate on this….leave this out” and together, we worked until we had what we feel God had commissioned, “Hope the Hip Hippo”.  She gets her name from Jeremiah 29:11, for He does indeed know.  Hope’s job, is to give the children a friend, someone they can relate to, and to give the parents a way to share what’s happening in a less frightening way.

Today, we are continuing in our personal fight.  We are still experiencing some ongoing pain and muscle weakness which may or may not be attributed to Mia’s hips, but we are continuing to search for answers.  In June, we will meet our new surgeon who has some very big shoes to fill, since our dear Dr. Heflin and his family moved back home.  We have been blessed with AMAZING people who have loved and support us the way. Each and every one of them played a different role and brought with them unique gifts, without them we’d have been in very big trouble!  We are also so very VERY grateful to Dan & Cara Whitney for the work they do with IHDI. Had they not done what they did then it would not be here for us now and if we do not do our part, it will not be there for those who come after us!  The gratitude we feel towards Dr. Price and so many others who work so hard for the answers we need is inexplicable. Yet we are humbled by their love and determination to use the gifts and ‘calling’ that God gave them to help and to fight for all of us!

As far as our continued plans for raising awareness, that one is simple.  Whatever it takes!  Speaking, writing, whatever we can do!  No child, teenager or adult should ever experience the pain, anxiety and fear I have watched Mia endure, and if I can help it…. no more will, God willing!!

Continue to fight the good fight, know that you are never alone, and as we say at One Hip World, “Together we CAN, Together we WILL!”





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Grace’s Story

Grace’s Story

When our baby Grace was born our doctor said that she might have hip dysplasia, it scared us – all new parents want there kids...

When our baby Grace was born our doctor said that she might have hip dysplasia, it scared us – all new parents want there kids to be healthy and safe…we had never heard of hip dysplasia before.

It was the end of Winter when Grace went in for her first x-ray. The doctor told my husband and I that when we’re born, the ball part of the hip joint is cartilage, and usually by 4 months, the ball has become bone. More and more, babies are developing the ball into bone later, even though all of the medical textbooks say by 4 months, it should be bone.

Our doctor has seen kids as old as 14 months that still have not developed the ball from cartilage to bone. Due to the fact that the ball is still cartilage, we were unable to get a clear picture of the socket and how it is positioned on an x-ray, since cartilage doesn’t show up on x-rays. For that reason, we had to go back in 2 months to have another x-ray, hoping that the ball will be bone and show on the x-ray.

Grace had her second x-ray in the Spring of the same year. There was concern that the socket wasn’t deep enough yet. The way the doctor explained it to my husband and I was that Grace is a B+ and she needs to get to an A. Our doctor decided to use a “Hip Abduction Brace.” We were fitted for this a few weeks after and then returned in 2 months for more x-rays and to see if Grace had to keep wearing it.

Our doctor said she might have to wear it for 3-6 months depending on if it is helping… Grace had to wear it 10-12 hours a day. However our doctor didn’t recommend using it at night.

Over the next 1.5 years, Grace has had 3 more x-rays and they all came back showing that her hips had healed!! We were very lucky that she did not need surgery. The doctors we saw were amazing. Grace crawled at 8 months and was walking by 12 months!! She is turing 3 in 1 month and is a very happy active little girl!!





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Grey

Grey

On February 27th 2017 at 38 weeks pregnant my water broke and I went in for a c section. We had already scheduled a c...

On February 27th 2017 at 38 weeks pregnant my water broke and I went in for a c section. We had already scheduled a c section for 2 days before my due date because my daughter was in breech position so this wasn’t a shock for me.

What was a shock is when the pediatrician came in to my hospital room after he had done his routine exam on my daughter, and said “Your daughters hips are dislocated so I’ve called and scheduled you an appointment with a children’s hospital. There thay will place her in a pavlik harness that she’ll wear for 3 to 4 months.” And then walked out of the room. My heart was broken. Something was wrong with my baby.

But nothing seemed wrong with her, she was perfect. So at a week and 2 days old I took her to her appointment with the specialist hopeful that he would tell me nothing was wrong with my daughter and that her pediatrician had made a mistake.

Her Dr. Came in did an examination of her hips and said that there was a slight click and that sometimes it heals itself over the first couple of weeks after birth, and he wasn’t really worried about. But just to be sure he had scheduled an ultrasound the following week.

The next week I brought her to her ultrasound and watched the screen as the technician did her job. I could see that one hip was worse than the other and I knew it wasn’t good. We then made our way back to the specialist who looked at the imaging and made the decision to place her in a pavlik harness. His first assessment was that she needed to wear it for 6 weeks 24/7 and then an additional 6 weeks at bedtime. I was a complete mess, watching them place the harness on my baby and seeing her look so unnatural, I couldn’t help but cry.

The time frame changed after our latest visit and ultrasound. The images looked so much better and he said that both of her hips were healing nicely but he wanted her to continue wearing the harness full time other than taking it off to give her a bath, and then an additional 6 weeks at bedtime.

She has now been in the pavlik harness for 8 weeks, and though at first I was scared and heartbroken, I’ve found comfort in the harness, and knowing that it’s helping her. She is perfectly happy and healthy and wearing the harness has never seemed to bother her, for that I am grateful and I am so thankful for her Dr. Giving me hope and taking the time to fully explain what was going on, unlike her initial pediatrician. And for this website that is so full of information and helpful stories.





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Hannah

Hannah

Hey everyone! My name is Hannah and I am 17 years old. I am currently a patient at Children’s Healthcare of Atlanta. My journey with...

Hey everyone! My name is Hannah and I am 17 years old. I am currently a patient at Children’s Healthcare of Atlanta. My journey with hip dysplasia began seven years ago when I was going into 5th grade. It was summertime. I was involved in competitive dance, and I also played golf several days a week with my family. On this particular day, I had been to golf camp that morning and then went to speed and agility training that evening. I remember sitting at my kitchen table that night and my mom asked me to take the dog out, so I stood up to walk outside but immediately started screaming. I had a sharp, shooting pain down the side of my left leg. We went to Urgent Care and I was told that I had a sprained hip. By the end of that summer, I was still struggling with a lot of pain. We went to the doctor and I was diagnosed with bursitis and snapping hip. I did about a month of PT and still was not improving. We went to see a chiropractor that we were referred to by a friend. He was also a physical therapist, so he worked with me a lot on strengthening my hip to see if I could get better. No improvement. I continued to get worse and eventually could not walk, so crutches it was. The chiropractor was examining my hip and said that he could feel a torn muscle in my left hip and that we needed to go see a different orthopedist, so we did. The orthopedist sent me to a different physical therapist, but I still could not walk. We then went to yet another orthopedist. He ordered an MRI and found that I did have a torn muscle, evidence of a fracture, and I was also missing a muscle in my left hip. So more physical therapy. After two months of PT and four months on crutches, I was able to walk again! I got stronger and really was not struggling with my hip at all anymore! In 6th grade, I went back to dancing, but after a few months, my hip started bothering me again. I decided to stop dancing, and that was very helpful. The pain went away and I was able to do most ‘kid’ things.

In 7th grade, I decided to try something new and play lacrosse. I fell in love with lacrosse. My first season went so smoothly. No hip problems at all. Spring season came around and I started struggling with sharp pain and clicking/popping in the same hip. Ugh. I was very frustrated that the pain had come back, but I pushed through and finished the season.

I took the summer to rest, but the issues only worsened. We went to see a different doctor and they recommended that we try another round of physical therapy, so that is what we did. I loved my physical therapist and really trusted her. After several weeks, she talked to the doctor and they agreed that an MRI would be helpful. The MRI showed fraying in my labrum, but the surgeon was not comfortable operating. We tried several different injections into my hip to relieve the pain, but nothing really fixed the problem.
In December of my 8th grade year, my physical therapist referred us to a hip specialist in Atlanta to get a second opinion. After an exam and one X-Ray, he diagnosed me with bilateral hip dysplasia and FAI (femoral acetabular impingement). He also ordered an MRI that confirmed a full tear in my labrum. In February 2017, I had a hip arthroscopy to repair my labrum and correct my FAI. The surgery was a success, but about eight months later, it was decided that I would need the PAO on my left hip for my hip dysplasia. In February 2018, I had my LPAO, and it was successful! I felt SO GOOD that summer, almost like a new person. During my sophomore year, I decided to try something new and tryout for my school’s swim team. I loved swim so much. During swim, I struggled a little bit with my hip, and I even had my screws (from the PAO) removed in the middle of swim season and took three weeks off, but I came back to finish the season!

During the summer going into my junior, I was still struggling with some pain, and I started walking very weirdly. My left leg would swing out to the side every time I took a step. This lasted several months but improved after several weeks of wearing a brace I had from my arthroscopy. I went back to see my surgeon and he decided to order a fresh MRI to see what was going on. The MRI showed some damage to my labrum and that I also had a lot of scar tissue and adhesions in my hip. He did a steroid injection, and it worked so he knew that a repeat hip arthroscopy would probably be best. In February 2020, I had surgery to repair my labrum, scrape out adhesions, and shave off a little bit of an impingement on my femur. The surgery was very successful, and my doctor was very pleased with how it went. He was confident that this was my last surgery! My recovery went smoothly, and I was improving slowly, but surely! At the beginning of May, I suddenly lost all feeling and ability to move in my left leg and my foot was blue and cold. I was taken to the E.R. and admitted to the hospital. After having brain, spine, and hip MRIs, and being examined by orthopedic specialists and a neurologist, I was sent home. I was told that this was something called Conversion Disorder, which can happen after a trauma, such as surgery. It took about three weeks for my leg to fully wake up, but I am doing very well now!! I am actually running a little bit and I don’t have too much pain! My surgeon and my physical therapist are very happy with how I am healing and everyone is very confident that I now have a healthy hip!

I truly wouldn’t trade this experience for the world. I have learned so much about myself and about other people. I have become stronger than I thought I could be. I have also figured out that I want my future career to be involved in medicine so that I can help other people through their experiences. Though this journey hasn’t been easy, I truly would not be who I am without it. I am also BEYOND THANKFUL for the doctors, nurses, and my physical therapists that have taken care of me throughout all of this. They are truly the best!

My message to anyone that is struggling with hip issues and has received a diagnosis or has not yet received a diagnosis is PLEASE do not give up!! I know how difficult it is to not know what is wrong with you and to feel like you won’t find a way to feel better. I know that these hip issues can cause so much stress. And I know how badly we all want to just be able to do what we want without worrying! Don’t give up.

And to the people who have had hip surgery, you are so strong. It is not easy. Now it’s our turn to help those who are experiencing this after us.





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Hayden’s Story

Hayden’s Story

Hayden was diagnosed with bilateral hip dysplaysia at birth. At the 6 week mark the right hip had fixed itself, but the left was still...

Hayden was diagnosed with bilateral hip dysplaysia at birth. At the 6 week mark the right hip had fixed itself, but the left was still a complete dislocation. After struggling with the pediatrician in a far remote arctic community, I advocated on my baby’s behalf for us to be sent down to see a pediatric ortho surgeon.

They tried to convince me that we would be able to wait until she was 5 months old to have her hips looked at, I refused to leave the office until they put the referral in. At nine weeks old she was placed in the pavlik, for 8 weeks 24/7. This was devestating, I cried for weeks and wondered what I had did wrong. It was like grieving a loss. I wasn’t able to hold my newborn baby like everyone else around me. It was a dark period in my life….

She progressed and was allowed into a rhino brace for 14 hours a day, then 12, then 8, then every other night. This was over the course of 7 months. We adjusted and it was second nature for us. The next worrisome part was her 1 year follow up, in which she was scheduled for an x-ray, I was a wreck a month prior, with constant worry that her hips were not growing at the rate her body was.

To my pleasant surprise, her X-ray results came back perfect! Such a weight lifted off my shoulders!!! I was probably the happiest I have been in a long time. Her legs have become bowed due to the rhino so we have a follow up I’m a year to see what her legs will be like them. BUT that is nothing in comparison to the journey we just endured. She is a reliant little girl ….

I guess what trying to say is for other hip babies who have been diagnosed and their families is that although the journey may be long and dark. There is a light at the end of the tunnel! All the best in your journeys and I hope each and everyone of your babies has an outcome like mine did. Xo





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Hayley

Hayley

My daughter was 15 yrs 3 months old in Oct 2013 when we found out she has HD in both (right worse than left) AND...

My daughter was 15 yrs 3 months old in Oct 2013 when we found out she has HD in both (right worse than left) AND was a great candidate for PAO (periactebular osteotomy) BUT wait till pain came as could go on for yrs with NO pain (which we prayed & prayed that would be the case as she is not a sports player & never has been just in PE in school).

How we came about discovering she has HD was what I say “by a fluck” as her orthopedic specialist had been treating her like for almost 2 yrs prior to Oct 2013 for a LEFT knee injury/pain from when she was playing basketball in PE she jumped & “landed wrong” she was in braces/no weight bearing/no bending type braces/on crutches and NO PE for almost 2 yrs & still was having “problems/ pain” (it got to the point also he had to refer her to physical therapy to learn to walk AGAIN without braces & crutches—which they did in a 2 hr session—yea I know it sounded funny to us also of having to have a 15 yr old taught to walk again–but she had that weekend off school & Mon was a holiday so the therapist told her she will allow her to use crutches only in school starting Tue for ONLY 2 weeks–well after the session she said I AM GOING TO SCHOOL ON TUE WITH NO CRUTCHES and by golly she DID–I called her therapist & told her & she was even surprised at her determination)but back to her HD part.

We got xrays of her hips as Dr thought the pain might be coming from hips so he got them back & came into room & asked me if she was 1st born (no has 12 yr older brother) was she breech (no) if anyone on either of our sides has hip dysplasia (I said what is that) so he said that is prob a no & said she has hip dysplasia right worse than left & has to send us to a Pediatric Orthopedic Specialist. So got appt there in Oct 2013 & that was when the new doctor came in & told us she is a great candidate for PAO BUT let’s wait till pain shows up as could go for many yrs without pain so that was our plan but with like yrly checkup. She got thru her 16th birthday in Jul 2014 & rest of Summer well. She done good no pain UNTIL she started school in Sep 2014 in which she was walking 7/10 mile to school & walking from class to class (we had just had new school built 1 level not 3-4 level AND NO stairs) from 1 end of building to other & walk back home 7/10 mile.

By Oct 2014 she started getting pain from her right hip area–called her Dr  & told her—she didn’t think there would be any changes on xrays so didn’t take new ones—so they told her very minimum walking (no to & from school no walking without crutches IN school & had her on very minimum PE) well by Nov 2014 pain started getting worse so they took her out of PE classes for rest of yr & still other restrictions in hopes pain would go down—end of Nov they injected her hip joint with a “test” injection (if it helped relief pain for the 6 hrs it was to then they knew it was in joint from her HD—it did) but it wore off so pain came back AND STILL DID NOT WANT TO DO ANYTHING MORE as they said “it can’t be causing much pain” so I called another Hospital (come to find out her Ortho Spec works there on Tue’s also) we got an appt there within a 1 1/2 weeks time AND it WAS ON A Tue—so got there to register her & all & they asked if we wanted to see our original doctor as she was there today and I said NO we came here for 2nd opinion with a DIFFERENT Dr & we didn’t know she works here also but NO–we got with with a new doctor & she was very thorough (4 hr appts—including NEW xrays/getting orthotics/another injection/AND finding out she also has “knock knees” & in-toeing bad AND flat feet but the whole time there we had to wait to see Dr/etc maybe only 20 mins as rest of time we were doing something with Dr/nurse/etc).

Well the new doctor set up surgery for her Derotation of femur & tibia on right for Apr 14th as she said her HD was mild & hopefully with orthotics AND this surgery pain would go away. Our doctor knew we were there so she called to see how Halo’s pain was in hip & I told her it was still bad. So put her on Naproxyn (well that for some reason gave her headaches/migraines) so the “best” they could do was have her take Tylenol AND Ibuprofen (which by Mar she was taking the max of them which was 4000 mg Tylenol AND 1600 mg of Ibuprofen A DAY) and also was starting to miss ALOT OF SCHOOL cause OF PAIN was getting worse! Well make story not so much longer—her surgery was cancelled cause in Feb 2015 she had developed tingling/numbness in her right leg/foot and her pain was up to like 6-10/10 on most days (so missing ALOT OF SCHOOL)—took her to local ER & even her Pediatrician til FINALLY in like beginning of Mar (I believe) hospital said let’s get her in to get a EEG (or whatever it is to check nerves) to make sure no nerve damage before we can set up surgery again.

Well had it done & NO nerve damage. So on Mar 18th we went to Neurologist just to further tell us no nerve damage but still don’t know why numbness/tingling as everything is ok so I just jokingly said well it was prob the pain saying hey u been in so much lately I will just give u more “symptoms” and the Neurologist said yea probably (I laughed in her face cause I could not believe that she agreed with me). The doc had viewed her new/old xrays/mri’s/ct scan (other hospital ordered special scans be done back in like Jan & it was done somewhere else but I am sure he seen them also)and her records prior to coming in to talk to us so he said yes she is a great candidate for a PAO and I can do it on May 14 and he took her off crutches she was on since Oct & put her in wheelchair for NO weight bearing just around home very minimum.

She had missed over 100 days of school cause of pain. She had her pre-op done on 13 May & had PAO on 14 May starting at about 8:38 AM (had to go to a “pre-op” room to put IV in where I got to go back with her then they took her to a “block” area where I couldn’t go as they put in the epidural then take her off to surgery so I went back to waiting room to wait with her dad. It was about a 2 hrs surgery then had to wait til she was in recovery room where I joined her but found out she had to be transferred to a different hospital (as she was underweight of less than 100 & they were not set up I guess for peds under 115 lbs) so they made an exception for her dad to come to recovery also when I told them he would be going in ambulance with her & I would get her things in car & transfer over there—they had to wait till like 1:25 pm when they got call there was a room available for her then had to call for ambulance and then wait til they were available not on calls as calls took precedence over transfers so by 3 pm she got there (thought having her dad there would help her but she had an anxiety attack & thankfully he was in front and EMT was in back with her).

She had to stay in hospital 2 extra days as she wasn’t keeping food/water down they FINALLY got the right pain meds for her (had to go thru diff one’s till they found correct 1–Oxycodone) even if they had her on a med schedule to try stay ahead of pain before they figured which 1 she had 2 horrible painful days after surgery (15 & 16) but day/night of surgery she was great (she had told us like on the 13th “it seems like I am in a dream I can not believe this is going to happen tomorrow” and when we were in the room having IV put in she said “mommy am I dreaming or is this happening” & I told her “no dreams it is real”–in recovery she even asked me “mommy am I dreaming that I had surgery”” I said no sweetheart you had it” and she said “it don’t feel like it cause there is no pain”) She couldn’t even believe it happened the rest of the day as no pain. On 15th & 16th we could not take it seeing her in that pain she was in till they figured out the right meds & dose–we were relieved as she was also.

Since the 17th in hospital till 19th they kept her pain free as she was on a schedule to stay ahead of pain. When we were getting discharged they gave her some Tylenol AND Oxycodone for the 2 hr ride home. Since we got home the 19th we gave her Oxy & Tylenol before bed as pain cause of getting in & out of car & in house & all but also in hopes she could sleep better. She stayed upstairs sleeping in recliner at nights & during days napping. But since the 19th she has had to take MAYBE 6 Tylenol (1000 mg) & MAYBE 6 Oxycodone—which is not bad at all. But since about 26th I think she decided that she wanted to be in her own room AND sleep in her bed as she hadn’t done in about 2 weeks so she has been going down 12 stairs at night & up 12 in mornings with us going down with her to be there/help her get down & get into bed & all as still in crutches & no weight bearing/etc & in morning going down to get her up from bed & up stairs/etc.

She still in ways thinks its a dream as no pain. She has gone through ALOT with this prior to surgery cause of pain then her school was terrible against her & us (we tried to work with them but they didn’t seem to want to work with us). Thankfully she did not have to go back to school when she got home as our doctor said no school till 5 Jun (her school had only till 2 Jun) AND she was to have a tutor in home 5 days a week for 1 hr a day (as he thought she would have to take the narcotics more than she did I guess he was basing it on pre-op pain) well school got a tutor in for 6 hrs for 6 days and then when I asked to extend it so she could catch up more they said no we just did it for those days for her cause we did not have to—I said whatever.  So now school is over for Summer she is also in better spirits cause no worrying about them (I told her do NOT worry about school during your recovery/Summer). WE ARE SO HAPPY TO HAVE OUR DAUGHTER BACK—I say that cause the pain she had to endure all them months she “was not herself” so down/upset/in pain/crying/etc. It is so good to FINALLY NOT SEE HER IN PAIN and in such a better mood & all! If any questions just ask me I will try answer them!





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Hayley

Hayley

 My Hip Dysplasia story is unusual because it isn’t even mine. I was training at a boxing club in Warrington, UK in 2014 when...

My Hip Dysplasia story is unusual because it isn’t even mine. I was training at a boxing club in Warrington, UK in 2014 when one of the trainers introduced me to a young woman called Hayley. Hayley was training for her first amateur boxing bout and mentioned off-hand that she suffered with a condition called Developmental Dysplasia of the Hip. My interest was piqued, so she told me all about her struggle with this condition (that I had never heard of) along with all of the painful procedures she has undergone since her diagnosis at the age of 5, as well as those still to come.

Her story of training despite all of this was particularly moving, and inspired me to learn as much as possible while documenting this, as well as seeking out other people effected by DDH at various stages of the journey. I spend the next few years traveling around the UK, speaking to doctors, surgeons, physiotherapists as well as patients and their families in order to gain a true understanding of the impact DDH had had and will continue to have on tens of thousands of people every year. This research eventually assembled itself into a film called A Mile In Her Shoes, which completed in early 2019. The goal of the film is to spread as much awareness of DDH as possible, particularly to very young sufferers for which the early months of life are so crucial in terms of prognosis.

Throughout all of this, Hayley has not once lost her positive outlook on life or her desire to help others in a similar position. She now has a young son, and continues to train harder than ever! She will very shortly have the full hip replacement her previous procedures have been leading towards, which will hopefully be the last major surgery she has to go through.

To learn more about the film;

amileinhershoesfilm.com
facebook.com/A-Mile-In-Her-Shoes-Film-317581275806345/?modal=admin_todo_tour
twitter.com/DuncanPatrickMc





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Heather

Heather

Hi, I’m Heather and I started having hip pain just after my 16th birthday. It started after I jumped down a water slide, in February...

Hi, I’m Heather and I started having hip pain just after my 16th birthday. It started after I jumped down a water slide, in February 2011, and felt a pop in my hip. I couldn’t lift my leg more than 6 inches off the ground. I thought that this was a muscle strain or tear so I took it easy that week in both dance and track. After two weeks everything seemed better, although running was still painful. During the summer, I competed in my regular swim team meets with no pain. In the fall, I was back to cheerleading and dancing with almost no pain, but then in November my hip pain started exponentially increasing. I went to a local town doctor who”confirmed” my injury as a muscle tear. I was told to take a 6 week break from all activities. The pain just got worse walking, sitting, and any activity put me in more pain. From there I got x-rays, an MRI, and a CT scan. After being referred to 6 more doctors with varying ranges of ideas on my hip, I finally was referred to Dr. Sierra at the Mayo clinic in Rochester, MN.

Dr. Sierra requested another MRI and CT scan with their higher quality machines. These led him to find that I had torn my labrum in my right hip multiple times. He also diagnosed me with mild to severe hip displasia. He gave me the option to get the arthroscopic surgery to fix the tears or to get the PAO. I chose to start with the arthroscopic hip surgery in the hopes that the pain would be gone when the labrum had healed.

So in the summer after I turned 17 I received my first surgery. I was out of the hospital the same day. I was on crutches for 6 weeks and then never ending physical therapy, because I felt a new pain. The labrum had healed, but the stress on my joint had become more prominent. I went back for my one year check up, and the doctor knew that I would need the PAO.

So I geared up for my second surgery. The surgery took about 3 hours and I was in the hospital for 5 days. This was an extra two days compared to the typical teen patient. This was caused by too much medication. For the surgery I received an epidual for the pain, but not as a shot but a continuous stream of the medication into the spinal area for 3 days. The doctor knew that the dose was much too high when on the second day I still couldn’t even wiggle my toes. The epidural was turned off, but it took me longer to recover than normal because of this.

Post-op is difficult when the joint is restricted to less than 90 degrees. This means for the first couple weeks I needed help sitting down, getting out of bed, putting on shoes, picking things up, not to mention trying to put on pants. This all got better after about 3 weeks. I went to physical therapy for 5 months during my recovery, I regained my balance and muscle strength, but I never progressed to high impact activities without a medium amount of pain. So being my first semester of college I started walking more and doing yoga.

At this point my pain was mostly nonexistent, as long as I avoided my favorites activities of dancing and running. So at my PAO 1 year follow up the doctor checked my x-rays carefully. He discovered that my hip had only grown back together at two of the three cuts made. This has a less than10% chance of happening, but is a known risk of the surgery. Dr. Sierra suggested it may grow together eventually, but it may never fully heal. At this time, I was also experiencing pain with the screws in my hip. With the freedom to exercise I lost about 10 pounds, this caused my screw to stick out about 1/4 of an inch under my skin. My jeans caught on it and bruised it from the waistband. I would occasionally hit it on counters and chairs. So this last winter break I choose to have my screws removed.

My doctor said this is quite unusual, as I was his 7th screw removal out of around 75 of his PAO patients. This was my last surgery. The surgery itself lasted about an hour, and then I was in recovery for about 3 hours. I was given Tylenol and could walk out of the hospital with minimal discomfort and no crutches. I had two screws removed and the small pain in my hip is getting better.

Overall I recommend talking with your doctor about which surgery and in which order is best for your situation. I was lucky enough to have all of my surgeries during school break so that I was mostly recovered before returning. My doctor was able to take my displastic hip from 19 degrees of coverage to 28 degrees. This has greatly taken away my hip pain. My other hip is within the normal range of 25-35 degrees of coverage.

Each individual journey is filled with its own trials and success. Many people my age have had 100% full recoveries back to sports, but there is a small chance that the pain will be mostly gone but you won’t be 100% fixed. To me it was worth the surgery process to be able to walk, swim, practice yoga, and live without pain in those activities, rather than to suffer in pain scared that the surgery didn’t guarantee me to be the active person I was used to being.

Every individual that goes through this process is scared of this giant decision looming in front of them. It is up to you to decide if the risk is worth it. The recovery is long and there is a chance that it won’t work exactly how you had hoped. I have grown and matured so much from this process and I could never have done it without great support and my faith in God and his plan. I am happy to say that my journey is over with success in my eyes. To those of you still on your journey, best of luck and know that things will get better.





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Heather’s Story

Heather’s Story

In the early 90’s, my wife had given birth to a beautiful baby girl. Two days later, when she was getting ready to be discharged,...

In the early 90’s, my wife had given birth to a beautiful baby girl. Two days later, when she was getting ready to be discharged, the doctor walked in and said I have bad news and just blurted out that our daughter would never walk because she was born with her hips dislocated and then walked out without any help as what to do for our child! Needless to say, we were devistated! Luckily, a nurse then came in and gave us some options and said good luck.

We took our daughter home and made an appointment for an orthopedic doctor to see our daughter. At the appointment, he gave us a traction harness to put our daughter in to try and form her hip joints . After a few months, they realized that wasn’t working so they put her into a cast with her legs spread, again, to try and help her hip bones to form around the joint. The looks we received from people when they saw our daughter in a half body cast was horrifying.

For them to see a baby in a half body cast was basically them calling us bad parents for allowing something that major to happen to our child! We eventually started saying she was born with dislocated hips and their looks of anger turned to empathy. We then moved to Florida where my wife found some great doctors. She learned to crawl with her cast and even pulled herself up onto the coffee table with her cast on!

Finally, after many surgeries and being in traction for months at the same facility that Larry the Cable Guys son, her cast came off! A couple of months later while at home with my daughter, I watched her pull herself up onto the couch to stand up, she was across the room from me and I said come to Daddy. She turned, looked down at the floor, then looked at me and smiled. She put one foot out, then another, leaned forward and more like wobbled than walked but she made it to me! I was brought to tears and crying and so happy that my daughter who they said would never walk, just walked to her daddy! My wife came home and I told her what happened and we cried some more!

After that day, we couldn’t get her still! She grew up to play baseball, twirl baton, run and play just like any other child! Now, she is a young adult who is in graduate school to become a therapist. There is hope people, you just have to have faith! I hope this story helps someone out there that’s going though the same thing we went through. Good luck to all and remember, you’re not alone!





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Heather’s Story

Heather’s Story

I was a breech infant, born naturally, and had a clubfoot and bilateral hip dysplasia at birth due to this. My mother’s OB/GYN and my...

I was a breech infant, born naturally, and had a clubfoot and bilateral hip dysplasia at birth due to this. My mother’s OB/GYN and my pediatrician both chose to use the “double diapering” treatment instead of a Pavlik harness or the spica. The double diapers served the same purpose as the Pavlik, or was supposed to anyway.

As I got older, it was hard to tell what was the hip dysplasia and what was my joints (I had very loose ligaments), and so I was followed closely by a physician until it seemed as though everything had corrected itself. At 18 years old, I tore my labrum in my left hip, which is essentially the ligament that holds the hip to the femur. I saw an orthopedic surgeon, who specialized in hip dysplasia, and he explained that this was a very common injury for those whose hip dysplasia went uncorrected.

At 18 years old, I had to have major hip surgery in order to repair my labrum, and this was not a permanent solution. I will likely have to have a hip replacement at a young age, or a repeat of my previous surgery.

My mother was familiar with the Pavlik harness, having worked in health care for many years, and she asked the doctor why they wouldn’t treat me with it. They never gave her any answer other than “this will work better.” She says to this day that she wished she had fought for better treatment.





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Heather’s Story

Heather’s Story

I am now 23 and just graduated from college: Mine is a story of amazing grace and miracles, yet it is still difficult for me...

I am now 23 and just graduated from college: Mine is a story of amazing grace and miracles, yet it is still difficult for me to share. I do want to invite you to take a walk in my shoes. Largely because of my pride, I have never before shared all of these feelings and emotions with many people. I pray that throughout this journey you will see God’s powerful hand at work. He is the Author and Perfecter of all things, including my life and my story. Sometimes it is difficult to see God’s fingerprints; but those are the seasons through which we must search for them ever harder. With each of my steps, there have been tears of joy and tears of pain. There have been reports of hope as well as gloom… but through it all, God has worked miracles. –

After hours of agonizing labor, she was a mother for the first time. She waited and waited for the doctor to come back and hand her a beautiful baby girl. The doctor returned and declared that there was something wrong. “She has bilateral hip dysplasia.” These words were foreign to the first-time parents. “What?”

When I was born, neither of my hip sockets developed. Usually with braces, traction, body casts, etc., the sockets eventually form. As a result of the immediate treatments, my mother was never able to hold my bare body until I was almost six months old. Thankfully the left socket developed on its own – not normally, but it was functional. The right one hung limply by my side like a rag doll. “She will probably never walk, you know,” stated the doctor matter-of-factly. I have one of the most severe cases in the entire country… Thus began a series of treatments, doctor’s visits, 400 mile round-trip drives to seek help; thus began a nightmare. By God’s grace and help, my parents navigated graciously through my first three years.

They got pregnant again. At the age of three, there was not much about the birthing process that I could comprehend. Mom said she was having a baby, and that I could have one too. I was thrilled! My baby was going to be “born” on the same day as my baby brother. It was going to be a girl, and her name was Oscar, yes Oscar! Amidst the excitement, my parents encountered another blow as the news that my precious baby brother was to be born breech; a sure sign that he would have hip dysplasia as well. They could do nothing but watch, wait and pray. October 12, 1992, my little brother was born. Unexplainably, he was born completely healthy and without any complications. Just after we brought brother home from the hospital, I went in to have a major surgery. This would prove to be only one of many.

When I was younger, it was incredibly hard to understand why I had to be “different.” I wanted to run and play with my friends at recess, but I couldn’t keep up. I wanted to go sleep over at a friend’s house, but I was embarrassed because I would have to bring my leg braces. Around age three, I had a serious surgery that left me in a body cast. I a fiberglass cast held me hostage from my toes to the top of my ribs. I remember one of my aunts entering the hospital room. “Don’t look at me,” I told her. She said, “Oh, sweetheart, why not?” “Because I am ugly…” and the tears began to flow. I just could not understand why I had to be different from everyone else. I hated going out in public. A four year old should not be in a wheel chair! The stares and the glares were burned into my memory.

While I did have a serious disability, I was never allowed to act like it. I applaud my parents for how they raised me. They told me that it was ok to hurt, but I could not take my hurt out on anyone else. They also said that it was ok to be mad and frustrated with God; I just could not stay that way. Following a surgery in 3rd grade, I was recovering at home playing a game with my little brother. I was losing and decided to throw a temper tantrum. My mother still disciplined me and sent me to my room. I was shocked “But Mommy, I am hurt,” I whined… sternly, she sent me down the hall on my crutches to my room. At the time I was oh so mad! Now, I thank her and my father for not allowing me to use my disability in a manipulative way. As I grew older, I began to understand that my parents could have easily babied me through my childhood – heck, it was traumatic! But in their great wisdom, they did not. I was special, but not a brat; I was given attention, but was not a drama queen (well, maybe just a little bit!)

My sweet little brother has always been there to take care of me. We attended the same school, and although he was three years younger, he was the first one to help me, to defend me, and to check on me. He never voiced it, but I know he has dealt with his share of jealousy and frustration. Instead of getting angry or envious, he became my friend. After every surgery he was the first one waiting for me. As soon as I was awake, he would be at the side of my bed ready to play dinosaurs or color with me. He has been one of the greatest blessings of my life and I don’t know what I would have done without him!

The summer before my 5th grade year, my family and I were on a vacation to San Antonio, Texas. We had such a great time at the zoo, at sea world, and the Alamo. On the last evening of the trip, we ate in a small diner next to our hotel. Sleepy and full, we stood up from the dinner table. That is, everyone but me. I tried to stand and with an explosion, my right hip dislocated. I cried until I could not breathe. My Daddy carried me back to the hotel. When we got home to see a doctor, there was no doubt that my hip had snapped. Fifth grade was a difficult time. I had to walk with at least one crutch; I could bear no weight on my right leg without some kind of support. Nearing the end of the school year, we went to see my doctor in Albuquerque, New Mexico. Dr. S agreed that something had to be done. My right hip was completely dislocated, and as a result was almost 8cm shorter than my left. Surgery was indefinite that summer.

In June of 2001, I was admitted to a Hospital in Albuquerque. Originally I was going to have to wear a traction boot to help pull my leg (which was 8cm higher than it should have been) back into place. Upon arriving at the hospital, Dr. S entered my room and announced that a simple boot would not be enough to do the job; my leg was far too misplaced. That evening I had a simple surgery to drill a rod through my right knee. The ends of the rod stuck out of my skin. Weights were rigged to the rod in my knee, and a week of hell began. Never have I been in such incredible pain. Sudden movements or jerks would send me into shock with pain. Of course, while in traction I would have a dream about being on a roller coaster. Vividly, I still remember what happened: the ups and down, the curves, twists and turns, and then the jerk. My body did exactly what my mind was telling it. It jerked violently as the “roller coaster” rounded a corner. I woke up screaming in pain, my mother who was sleeping in the chair next to my bed woke equally startled. Nurses came running into the room and have to give me a shot to sedate me and get the pain under control.

However, the worst of the pain was not over. It was the morning of the surgery, and I had to be unhooked from traction. Knowing the pain would be unbearable, I had already been given sedatives and pain medicine. The doctors come in to my hospital room and began to remove the weights attached to my knee. The traction had worked and my legs were now of equal length again. Yet, when they removed the final weight, my hip dislocated once again. Like the snap of a rubber band, I felt my hip jump up to my ears! Screaming with pain, the room went black and I was unconscious.

The fusion was successful although it did take away all motion in my right hip joint. I had to swing my leg to walk and was not able to put my shoes and socks on by myself. It was an adjustment but I did feel better than I had in quite some time.

Two years later, knowing no boundaries, I decided to try out for the cheerleading squad. Against all odds – mind you, I can’t jump or tumble due to my hip – I made it. The next four years I spent burning with passion on the sidelines. For the first time in my life, I felt normal. I felt as if I fit in.

My junior year of high school I began struggling with chronic, intense hip pain again. Concerned, my parents and I packed up for another trip to Albuquerque. My appointment was the day before my football team was to play for the state championship. A welcomed distraction, my mind was on the team and getting to the game! However, upon holding up my x-ray, the doctor jolted me back into reality. “How in the world…” The confusion and fear on his face alerted me that something was seriously wrong. He then pointed out to my family and I the giant crack in the metal rod in my leg. Yes, this is a tough, thick piece of metal that due to my “active lifestyle” I had managed to not just crack, but break in half. My heart broke as the doctor looked at me and said, “Maybe you need to give up cheer.” Pleadingly, my sweet Mother looked at me with tears in her eyes begging the same thing.

My head is as hard as a rock and I was just determined to ignore it, work through the pain, and get to the state game. Upon arrival at the football field, my squad embraced me inquiring of my appointment. “It was fine…” We had a job to do and at this moment – I was still cheering. The boys won and we screamed in victory and posed for pictures. As we climbed back on this bus, I had the sinking feeling that this could have been my last game to cheer… ever.

Through some prayer, my Mother’s desperate plea to have me stop before I do more damage, and basically my stubbornness, I was decided to finish out the season. After all, state cheer competition was only five months away! The pain was intense and I consumed prescription pain pills as if they were M&M’s. We went to state cheer and won 2nd place, losing by only one point! I did not cheer my senior year… it was difficult to let go of my passion but I worked as a youth league coach to compensate for my sweet sorrows.

After graduation, I moved to Texas to attend college. The rod in my hip totally severed, I walked around with bone grinding on bone. The pain was now excruciating and began to interfere with my social life. As a college freshman I declined invitations to play sand volleyball and ultimate Frisbee simply because I was in so much pain – let me remind you, I am a stubborn person. For me to admit that I “can’t” do something is HUGE.

Unfortunately, we were at the end of the road and without many options. I had already had eleven surgeries and those held a minimal success rate. The only option left was a total hip replacement… at the ripe age of twenty, the last thing I wanted was a hip replacement. Wanting desperately to enjoy my college experience, I put off making the dreaded decision. The doctor and my parents were patient and complied with my wishes, however in December of my freshman year of college, the broken portion of the rod had to be removed from my femur. The surgery was minor – the goal being to allow my femur to build back bone before a total hip replacement was possible. I returned to school in January on crutches and finished the semester.

The pain continued to increase and also continued to negatively impact my friendships, relationships and mental health. Living with intense, chronic pain is not something I wish on anyone. The summer between my sophomore and junior year of college, I made the decision to have the hip replacement. Reason and logic told me to wait until I graduated, but desperation, pain and love made the decision easy.

300

One of the most difficult surgeries I have had, I came through with a long road to recovery. Because my hip had been fused for almost ten years prior, all of the muscles, tendons and ligaments surrounding my hip joint were beyond atrophied… some the doctor even considered, “dead.” It was going to take over a year for my body to recover and build muscle that never existed prior. My surgery was June 25, 2010… in August, I returned to school to take 16 hours worth of classes and serve as the Director of Freshman Orientation for the university (this was a bad idea). Thanks to God’s grace and the help of many friends, I went to physical therapy three time a week and managed my class load.

My hip just celebrated its two year anniversary. Yes, I celebrate June 25th every year. In addition to it being my best friend’s birthday, it was the day God gave me my life back. It was the day that He used a doctor to heal my body. This healing has been long awaited… many tears and many arguments with God. I desperately believed in and desired a miraculous healing, however through my pain, so many more people were able to witness Christ’s faithfulness in my life. It is my testimony. No longer do I run from my pain, but rather embrace it as Paul did his “thorn in the flesh.” If this is the very tool God chooses to use for His glory in my life, who am I to stand in the way and argue?

I was in physical therapy and worked with a trainer for over a year and a half. God has been faithful and has used my story to help other people. I have a very special place in my heart for the Ronald McDonald House… ask God for divine appointments and He is more than happy to oblige! Today I am healthy and well – there still is pain and stiffness and some limitations, but trivial compared to my younger years. I help coach a cheerleading squad, scuba dive, compete in pageants and even skydive!





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Hope

Hope

I was born in 1990 in the North-East of England and my bilateral hip dysplasia was recognised a couple of days after I was born....

I was born in 1990 in the North-East of England and my bilateral hip dysplasia was recognised a couple of days after I was born. My parents were initially told to put me in large nappies and I was later put into a spica plaster.
At the same time I was struggling with immunity problems and was fed through an Ng tube. I spent most of the first few months of my life in the Freeman Hospital in spica casts or in traction.
The traction meant that most of my families early photos are of me with my legs bandaged up in the air with weights to try and corrext the position of my hips.
Xrays showed that my hip sockets were very shallow resulting in my hips easily slipping out of the sockets and a rotation on my femurs.
I had multiple femoral osteotomies and pelvic osteotomies to try and create less shallow sockets and correct the joint.
This would always seem to work and although I missed a great deal of school I still had a normal childhood making friends and doing pretty much whatever I wanted to do as long as my trusty wheelie walker frame could come with me.

This included sledging with my grandparents whilst in a hip spica.
I have fond memories of my splints which to make them more tolerable were nicknamed Lucy and Larry because of the sheepskin lining on the supports. I also named my zimmer frames Henry as they used to go everywhere with me and it made them more fun.

I continued to have surgeries at freeman everytime I had a growth spurt as my hips would begin to dislocate and wear each time I grew.
At age 5 my consultant orthopaedic surgeon retired and due the severity of my condition I was referred to Great Ormond Street Hospital in London where I continued to have regular surgery on my hips until age 13.

Whilst having surgery I was always up beat even when it was really painful or I was really poorly due to infection or surgical complications.
I have great memories of my spica casts which were always in a variety of colours including paint splodge.
I even had fun adapting to life when I had my spicas on for example to get round my parents house I used to lie on my belly on a skateboard and pull my self around I even made a cake lying on the floor. I also scared the life out of my physio and parents when I learned how to slide head first down the stairs in my cast.

I also learned to skateboard, tried snowboarding, rock climbed, scuba diving, snorkeling, rollerskating and most sports.
All of which I did either between surgeries and some even when I was recovering.

It wasn’t always plain sailing though it was hard when you know your friends ar school are able to run around and play contact sports and your else where doing exercises with your physio. I also had a lot of help with school as I missed a lot of classes due to surgery and recovery time at home. Although I never minded skipping maths to do hydro therapy.
I was also bullied due to my walking and my walking frames. I also used a special adapted chair at school to support my hips and bsck and make sitting more comfortable which did draw attention to my condition. However being the determined person I am although it hurt I kept going.

At 13 after having osteotomies and pelvic reconstructions and illiac crest grafts to my hip sockets my hips improved dramatically. I had much less pain my walking got much better (phew) and on xrays my hips actually looked like normal hips.

It was a great relief to both myself and my family to be told that from that point I wouldn’t need surgery for quite a while. At that point the consultant felt I wouldn’t require surgery till my late 20s or 30s.

I had a number of years where I was able to go to school and lead a normal life taking pain killers occasionally and having regular check ups with my physio.

At 17 I was discharged from the care of GOSH and sent to an young adult consultant at Freeman again.
Towards the end of 2007 I began to get increasing pain in my right hip.
Xrays showed I had osteoarthritis developing in my right hip and the space between my femoral head and socket was decreasing.
I was given a more intensive exercise routine to try and build up the strength in my hip to help with the arthritis and a different course of pain relief.
That did help my hip in the short term and I continued my final year of school. I attended my leavers prom in june of 2008 and had been having more discomfort at that time. After the prom I rested and the pain got worse to the point I received crutches and had to spend time using my wheelchair. I felt down as I only used my wheelchair for long distances such as going on holiday to theme parks in America as I can’t walk very far without getting muscle fatigue.

I spent time in hospital on morphine, having hydrotherapy for 6 months and having traction to try and relieve the pressure on my joint.

This did not improve my hip, and after discussing my case with a consultant specialised in DDH patients we agreed that surgery to replace the joint was the best option.

At this point I was 18 years old and no one wanted to give me a totsl hip replacement as they felt I was too young or my hip was too complicated to operate on.
I was referred to the Royal Orthopaedic Hospital in Birmingham where I met with a specialist in young people who require hip replacements.
We discussed my case and he felt the best option was a hip resurfacing. As this would last 25 years and would preserve bone in my femur in case of a future revison with a total hip prosthesis.
Where the stems go much deeper into the femur rather than just replacing the ball and socket.

Due to the external rotation on my femur I also required a femoral osteotomy as the surgeon could not get the joint to stay in place with the rotation.

I had my surgery in November 2008. Due to a prolonged surgery and blood loss I spent a night in HDU with a dodgy epidural my left leg was lovely and numb and my right operative leg was in agony more tissue than joint.
My first words on moving my hip for the first time was its so smooth the joint moved so well like a well oiled joint. I was so so happy.

Despite the complications I had with blood loss I still got up out of bed on the first post operative day and walked on my hip. After two weeks I returned home and continued my recovery.
I received hydrotherapy at Freeman and my hip gradually got stronger. I could walk and run better and was able to drive and get about on my own.

Before my surgery I had applied to go to university to become an operating department practitioner. This is a nurse working in the operating theatre. I felt it was the perfect job where I was able to care for patients in the kind empathetic way the staff who looked after me had throughout all my surgery.

I delayed this till 2009 and started the course in September. I had surgery in December 2009 to remove the osteotomy plate but was back doing my training in theatre in the January.
I have never let my condition stop me doing what I want to do.

I got my diploma with commendations in August 2011 and now work with anaesthetists assisting them in looking after patients having Anaesthetics.

At 24 I am able to look back at the surgeries and experiences I have had with pride and happiness as I would not be the person I am today if I had not had those experiences.
I also have a great love and respect for my parents who have been there with me and given me the love and support to stay positive, focused and determined to keep going no matter what.

My advice to young people growing up with DDH is never let it stop you, even when it’s really painful and doesn’t look like you can get a quick fix keep persevering. You can do whatever you want to do if you put your mind to it. Also when it comes to bullies, I can honestly say ignore them as one day you will look at what they become and they will pale in comparison to what you can achieve.

My future plans are to get married to the greatest guy ever in October 2014 and keep these hips going for as long as I can.





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Ina’s Story

Ina’s Story

Hi, My name is Ina. I’m 44 years old and was diagnosed with left hip CHD at 9 years. I went thru several failed surgeries,...

Hi, My name is Ina. I’m 44 years old and was diagnosed with left hip CHD at 9 years. I went thru several failed surgeries, open reductions, hip osteotomy, arthrodesis (fuses the femoral to the acetabular-hip socket), traction, petrie, spica and body casts from the ages 9-12.

I was told that I would never be able to run, skate, ride a bike and that I would be in a wheelchair for the rest of my life. A 9 year old doesn’t “Really” comprehend what that means. What do you mean?…”I Can’t”! Watch Me! I did all of those things except run and only needed the wheelchair for recoup.

I have always had trouble with pain, discomfort & mobility all my life. It’s the norm and I just lived with it. Until, the spitting fire of pain over took my life and I new it was time for more surgeries. I had acetabular grafting, reconstruction and Left THR- Total Hip Replacement in Dec. of 09. I’m doing much better but it’s a matter of time before I have the other hip done and a replacement for the replacement. I still have pain, discomfort and mobility issues and it has taken me this long to Really get back on my feet. I can’t sit, stand or walk for very long, but at least my gait is better and I don’t have such a pronounced limp. I find that I traded one set of issues for another and the journey continues.

I have Osteopenia, Osteoarthritis, PseudoGout in my right knee-had surgery after my THR for removal of crystals built up, Bunions, Fibroids (I call her Phoebe-The Fibroid- because she is the size of a 5 month pregnancy. I’m not ready for another surgery I already had my left fallopian tube removed) Hyper-mobility,Migraines, Balance issues due to my left leg being much longer after my THR-( I have to wear a lift in my shoe). Just to name a few. I only write to share my experience and or similarities that we might have. To shed some light on the crazy journey that we are on. Not for anyone to feel sorry for me. I KNOW that I am Blessed Beyond Compare to have the life that I have.

I find that being patient and pampering myself, giving my body thanks every morning for being my vessel for enjoying life, and celebrating the little things makes all of this a little easier. We are part of the most Elite Club around with a very high initiation to join.

Wishing everyone a speedy recovery no matter where you are on your journey. Hip Hip Hooray to all of us for the COURAGE it takes to BE US.

I haven’t written in my blog in awhile…It just became a bit too painful to think about all things Hip. But, if you like to check it out go to

www.inamarieandherhip.blogspot.com

I am forever Grateful for this site. Thank You IHDI for being here for all of Us. ~Ina, One Hip Chick~





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Iris

Iris

Oh the pain! In 2012 thinking the pain was from carrying too much weight on my hips. I tried losing weight but I could not...

Oh the pain! In 2012 thinking the pain was from carrying too much weight on my hips. I tried losing weight but I could not exercise at all because of the horrible pain going from my back to my legs. I was first diagnosed by a rheumatologist. I had figured it was just arthritis and x rays later… congenital bilateral hip dysplasia. At first I figured I’d lose weight to alleviate the pain and limp. I worked through the pain and kept working at my Housekeeping Coordinator job at a hotel. This involved a lot of walking and running up and down stairs. I had terrible insurance so I settled for terrible doctors.

I’ve been on high doses of Ibuprofen, Naproxen, Etodolac, Tramadol, etc. and they still have not helped with the pain. One day I collapsed in a stairwell at the hotel and subsequently quit because I could not take the pain anymore. I was able to stay home for a while. I went back to my child caring job and that too became to demanding. I also ,as a result of the pain from the hip dysplasia and osteoarthritis, developed fibromyalgia. This comes with wide spread pain, pain at tender points, fever/chills, joint pain, etc. I would cry myself to sleep at night.

Fast forward and at 36 (with my now husband’s great insurance and prayer) the first orthopedic surgeon and I thought I was too young for hip replacement. He gave me crutches and more medication. I went to get a second opinion and was told the hip replacement would be my best option considering the pain and severe limp I’m living with. My hip replacement surgery (right hip) is scheduled for May 11th 2016.

I have shared my story with detail because I want to let whoever is dealing with the pain (yourself or a loved one) that you are not alone in this. Don’t settle for crutches and etodolac like I did. Get a second or even third opinion. We don’t deserve to live with so much pain. I will keep you posted about my journey.





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Irla

Irla

Hi! My name is Irla, I’m 19 and I’m from Italy. I was born in Albania, where I was diagnosed with congenital bilateral hip dysplasia...

Hi! My name is Irla, I’m 19 and I’m from Italy. I was born in Albania, where I was diagnosed with congenital bilateral hip dysplasia at 2 years old. After that, my parents decided to move to Italy so that I could have surgery in a more advanced hospital.

I was 4 when I had my first surgery on my right hip, 5 when they first operated my left hip; they broke it into pieces and secured it with a femoral locking plate – which I still have. I only remember the uncomfortable cast and the excruciating riabilitation, nothing else.
When I was 7 years old my family and I decided to move to Northern Italy so that I could be visited by an amazing orthopaedist. I had my third surgery in 2011. After many X-rays, CT scans and MRIs I was told my left femour had been rotated wrong by my previous doctors. During that summer I was hospitalized. I remember vividely the pain after the surgery, the itching, which would never let me sleep. I remember that ugly, heavy cast and being restricted to bed for fifty endless days, completely dependent on my parents. I remember taking the cast off and almost fainting while the nurses helped me to get up. After that, I did riabilitation for what felt like ages and it took me 4 months to walk without cruches.
My journey has not come to an end. I cannot run, walk fast or walk for long distances. I have very little mobility in my right hip and because of this I’m going to have a femoral head replacement in the next few years – and I cannot wait!

I deal with pain on a daily basis but it is nothing compared to emotional pain. At 14 years old I began hating myself, my scars, my hip dysplasia. Depression hit me hard. I had suicide instincts almost every day for months. To me, hip dysplasia means being stared at, bullied and humiliated every time I step foot outside my house. I used to cry every single time a person stared at me. Oh, the stares; they never stopped.

During the last few months I stopped hiding my hip dysplasia. I stopped caring about the stares, I stopped feeling anxious and trapped while passing by a group of people. I want to be an example to every person who knows me, and for those who do not. I cannot imagine a life without my birth condition; I would be a complete different person.
To me, the hip dysplasia is who I am. I consider myself as unique, and unique is beautiful. I cherish my scars – I embrace them. I am not just a woman, I am a bionic woman. I know my worth.





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Isabella

Isabella

When Isabella (Bella) Garcia was only four months old, her mother noticed something strange – while changing her diaper and standing her up on her...

When Isabella (Bella) Garcia was only four months old, her mother noticed something strange – while changing her diaper and standing her up on her feet, Bella leaned to one side more than the other. Since Bella had been born with torticollis and plagiocephaly, conditions that are known for being paired with hip issues, she was a doctor herself and the mother of two other children, Cristina Garcia felt that it could be a sign of something more serious and took Bella to her pediatrician.

After a routine exam by their pediatrician showed none of the more common signs of hip dysplasia like a hip click, the pediatrician ordered an x-ray. Soon after, Bella’s father, a pediatric pulmonologist, decided to consult with his colleague, a pediatric orthopedic surgeon who specializes in hip dysplasia. The orthopedic surgeon performed the x-ray and an ultrasound on Bella and found the she did in fact have hip dysplasia. Since Bella was still young, the orthopedist prescribed the Pavlik harness for Bella and gave it a 95 percent chance of success. While the Garcia’s were happy to know that their daughter was likely not going to have surgery, they did quickly find out that life in a Pavlik harness is not always easy.

The Pavlik Harness

Lucky for the Garcia’s, Bella adjusted to life in the Pavlik harness quite quickly, however, the same may not be said for the rest of the family. Bella had to spend three months in the harness for 23 hours a day, which meant finding new and creative ways to dress her, change her diaper, and even fit her into a high chair, car seat or stroller. It also meant that she had to travel in the harness to weekly doctor appointments, on errands and even on the family vacation, and this often caused people to stare at her as if something was wrong. Her brother and sister had to learn how to hold her while she was wearing the harness, and her mom and dad wondered if she might have developmental delays.

Despite the struggles, which eventually became their new normal, Bella’s treatment with the Pavlik harness was successful and she moved on to the Taco brace, which is much easier on baby and family. After treatment with the Taco brace was complete, Bella continued to develop on a similar timeline as other kids her age. An x-ray when she was two showed no signs of hip dysplasia and her next x-ray will be at age 10.

Seven Years Later

Bella Garcia is now seven years old, and in first grade. She is very active and participates in gymnastics, cheerleading and loves art. She enjoys spending time with her sister (13), brother (10) and their new puppy Teddy. Sometimes looking back at photos of her in the Pavlik harness, she gets sad but then claims that it was because of her hip dysplasia that she is now so flexible.





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Isabella

Isabella

When my youngest daughter was 2 months old I realized at our most recent pediatric appointment the Doctor never checked her hips for range of...

When my youngest daughter was 2 months old I realized at our most recent pediatric appointment the Doctor never checked her hips for range of motion. Which I knew was protocol for an infant. Realizing such, I decided I would check range of motion myself and suddenly noticed her hips did not move out like they were suppose and the left hip was also clicking. I tried not to worry about it because I knew we had another checkup in the next week and thought I would mention during the exam. The pediatrician asked if I had any concerns, of course I told him about the hips and he said they were fine because they “looked” asymmetrical. He wasn’t bothered by physically moving them until I mentioned a “clicking” sound I had heard. I also noticed she wouldn’t turn her head fully on one side, which we then discovered she had Torticollis. At that appointment we were then referred to a specialty hospital where they discovered Isabella had DDH of the left hip.

I thought my whole world shattered, finding out my baby may have to have surgery. I was angry at the fact that the pediatrician never noticed this and didn’t follow protocol for checking the hips. I was angry that she had to wear a harness that prevented me from being able to hold her. You learn to adapt the harness into your lifestyle and after the baby gets used to it. After all of the long drives, numerous visits and sleepless nights we are finally starting to make progress with the acetabular angle. Isabella is 6 months old now and we are no where near being out of the harness completely but we are farther than we were. I’m thankful I was proactive and we were able to treat this early rather than wait until later when she would have to have surgery per the Orthopedic doctor.





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Isabelle’s Story

Isabelle’s Story

A Long, Hard Road to a Positive Outcome We hope our story will help other parents who have children with dislocated hips, especially those that...

A Long, Hard Road to a Positive Outcome

We hope our story will help other parents who have children with dislocated hips, especially those that are found after walking age and are difficult to treat. After our daughter started walking, we noticed that she was limping and her left leg looked shorter. We took her to the pediatrician and a dislocated left hip was diagnosed at the age of 13 months.

With a dislocated hip, the ball at the top of the thigh bone is up higher, which makes the left leg appear shorter. She had to bend her right knee to stand.

Our lives immediately changed and haven’t been the same since then. We saw an orthopedic surgeon who sent us to a pediatric orthopedic surgeon who had lots of experience with dislocated hips in children. My husband is in the military and we have another child so that made problems seem even worse. However, we both have a positive attitude towards life and that probably helped us as much as anything.

Of course we wondered how our darling daughter could have a dislocated hip that was not diagnosed earlier. We learned that this happens in almost 10% of dislocated hips even though our daughter had good medical care and regular examinations as an infant. There are definitely cases that come out of the socket after the age of six months. Even countries that have had comprehensive screening for decades are still reporting late cases of dislocation. It didn’t help us to blame anyone and it wouldn’t help our daughter recover so we turned our attention to getting her well as soon as possible. That turned out to be a lot harder than we ever imagined.

Brace Wear

We wanted to avoid surgery. A new method was tried called the Hoffman-Daimler method. It’s similar to a Pavlik Harness and successful treatment had been found in Greece. She tolerated it well and didn’t seem to mind but it was hard to get her clothes off and on. Also, it kept her from walking and that was pretty tough on a 13 month old who couldn’t understand what was happening. After six weeks the doctor said that this wasn’t working and she would need the standard treatment of closed reduction and cast treatment. The thought of four months in a cast was frightening but we had no other choice since bracing had not worked.

Note from the IHDI:
When a brace does not correct a dislocated hip, the next treatment options are a closed reduction or surgery involving an open reduction, possibly together with osteotomy. In a closed reduction, the child is put to sleep, and the doctor manipulates the hip joint to get the ball at the top of the thigh bone inside the hip socket. In an open reduction, the doctor surgically opens the hip socket. In an osteotomy, the doctor cuts bone to realign the hip socket and/or the thigh bone. In some cases the doctor tries for a closed reduction, which is less invasive, and if that doesn’t work, will then do surgery. Parents often prefer this approach as well because if the closed reduction works, then surgery is not needed.

Attempted Closed Reduction

At the age of 15 months, our little daughter had general anesthesia for a closed reduction. We expected everything to be fine. It was pretty depressing when the doctor told us that the hip wouldn’t go into the socket because the ligaments were too tight and something was in the socket that kept the hip out.

The arthrogram shows that something is preventing the ball from going into the socket.

We were resigned to open reduction surgery even though we had hoped to avoid that. At least the cast would only be on for six weeks after surgery even though she would need a brace for another six weeks. We thought the end was in sight and surgery was scheduled a couple of months down the road. We had some concerns that the bone in her thigh needed to be shortened and the pelvis needed to be cut. That sounded like a whole lot of surgery for a toddler.

Open Reduction and Dega Osteotomy Followed by a Cast and Brace Wear

When she was 18 months old, the date for the surgery had arrived. We were nervous, especially because nothing we had tried up to then had worked. Why we didn’t do the surgery first seemed puzzling but hindsight is 20-20 and we were told that most children didn’t need surgery. We were even more optimistic that this would succeed when we learned that our doctor had some visitors who wanted to watch the surgery and learn how to do it better from watching our surgeon do the operation.

The surgery took about four hours, but we were confident that our little girl was in good hands. After surgery, the doctor said that the hip did have something inside that kept the hip out of the socket. That had been removed, the bones had been rearranged, and the hip was now in the socket. We saw the before and after x-rays and there was a huge difference.

An x-ray after surgery shows the ball inside
the hip socket (Isabelle is wearing a spica cast).

Note from the IHDI:
This child had an open reduction and Dega osteotomy. With a Dega osteotomy, a cut is made in the hip socket, and the bone is tilted downward and out to the side to create more lateral coverage in the hip socket. Pins hold the joint in place as the new bone grows into the place where the cut was made. The child also wears a cast to keep the hip aligned and to provide support.

We were surprised at how fast our daughter recovered. The body cast was a lot more difficult for us than it was for her. We did what we could to keep her occupied and the six weeks passed even though every day seemed like a week all by itself.

She was scared when the cast was removed and her skin looked dry and crusty. There weren’t any sores like we’d been warned, but it took a good bath and some skin lotion to get her to stop scratching. We kept her in a brace for the six weeks although we were allowed to take her out for up to six hours a day. We went back to the doctor two weeks after the cast was removed. Everything looked fine on the x-rays and we were happy to have the big surgery behind us. She started pulling up and walking pretty soon afterwards even in the brace.

We went back for our regular appointments, but four months after her surgery our hopes were crushed when we were told that the hip seemed to be coming out of the socket again. How could that happen? We couldn’t imagine, but we were told that the hip was not completely dislocated so maybe a brace would help keep the hip in the socket until it became more stable. She was fitted for an Atlanta Brace that let her walk, but kept the hips spread so that the hip might go back into the socket.

After another three months of that brace, the hip was farther out of the socket than it had been just four months after surgery. Our doctor had discussed this with other doctors and the only thing to do was to repeat the surgery. He said he would do something different and make the hip stay in this time. Maybe we should have gone somewhere else, but we knew that we had a good doctor with lots of experience so we stuck with him. By now our daughter had spent a year trying to get her hip fixed. She was two years and three months old.

At 9 months after surgery, the ball is coming out of the socket again.

Note from the IHDI:
After the hip is surgically realigned in a child, the hip joint typically grows into a more stable shape as the bones develop. This process of bone growth is called remodeling. If the joint is not stable, and the hip goes out of position, the benefit of remodeling is lost. A Dega osteotomy corrects hip dysplasia in many cases, but unfortunately, in this situation the hip did not stabilize, and the child needed to undergo a second surgery.

Salter Osteotomy

This x-ray taken 3 months after the second surgery shows that the hip joint is stable.
This x-ray taken 3 years after the second
surgery shows the hip is stable and the leg lengths have equalized.

The second surgery went about the same as the first surgery except we knew what to expect and so did our daughter. Fortunately, she was still too young to understand but it was hard on us. This time the surgeon said he “was more aggressive” with the bones above and below the hip joint. The joint itself was tightened even more and the cast stayed on for 8 weeks.

She seemed to recover just as well as she had after the first surgery except that the hip stayed in the joint. She limped for almost a year because that leg had been shortened twice and she was pretty weak. Gradually, she regained her strength. A year after her second surgery everything seemed to be fine but she had to have another operation to take out the metal pins, plates, and screws. That went without a hitch and she was only in the hospital overnight. No cast was needed.

Note from the IHDI:
For this surgery, the doctor used a different technique to further correct the shape of the hip socket. He performed a Salter osteotomy. This surgery rotates the whole hip socket on top of the femoral head, allowing more room inside the hip socket. During surgery, the doctor was able to create more room inside the hip socket for the ball, so that it was deeper inside the socket. After this surgery, the socket reshaped and widened to fit the head as the child grew.

She continued to improve and we enrolled her in Karate because we thought that would help her with flexibility, balance and strength. Our precious daughter is now five years old and three years since her last major surgery. She loves karate and the instructors love her. She seems to have all her hip movement. The lengths of her legs have completely recovered like her doctor said it would. Fortunately she doesn’t remember most of what went on to get her hip back in the joint and keep it there. We’ll never forget, but we’ll also remember how great it is to have a healthy child who can do everything like other children her age.

Isabelle is back practicing Karate





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IV

IV

I always knew something wasn’t right with the way my son walks. Since a young age he seemed to have what we called a “signature...

I always knew something wasn’t right with the way my son walks. Since a young age he seemed to have what we called a “signature walk” a cool, calm and collective relaxed very smooth walk. Whenever I would mention to our pediatrician she would say there was nothing wrong and that he was probably just going through a growth spruts.
He has always been healthy and very active as a child and involved in various sports teams and activities. But it wasn’t until he experienced an injury freshman year while playing for his high school football team, which required an x-ray of his hip. First we were told by the sports medicine doctor that he injured his hip flexor and immediately begun therapy and continued to play on the football, basketball and currently wrestling team in high school. Because his “hip-flexor” was becoming unusually bothersome we decided to go in for another checkup.
This time (December 2014) the sports medicine doctor informs us that what my son, now a HS senior age 17, has is Hip Dysplasia and will need surgery to fix the problem and to prevent him from future complications. We were referred to 2 orthopedic surgeons of whom both confirmed him having Hip Dysplasia. I know he is young and strong and can bounce back from this, but as a parent I am afraid and very concerned for him. I also understand that the two surgeons here in Northern Ca are two of the top surgeons in our medical facility for this procedure, but I am still very worried for possible complications during and after this procedure.

If your teen has had a similar situation or if your teen is currently experiencing this, I would very much appreciate hearing from you.

Thank you kindly.





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Ivelisse

Ivelisse

My name is Ivelisse, I am 44 years old and I am from Puerto Rico, but I live in Florida USA for 14 years. I...

My name is Ivelisse, I am 44 years old and I am from Puerto Rico, but I live in Florida USA for 14 years. I was diagnosed with Hip dysplasia in my left leg from 4 years of age.

From there I started with 5 surgeries on my hip, which did not make any improvement. After going to several evaluations with surgeons, at 17 years of age they shortened the right femur to level the legs and avoid further scoliosis. After the operation they left only 2 cm of difference in legs. But, as my dysplasia is that my femur acetabulum is out of the socket, or floating and rubbing the hip every time I walk or move, because the difference of 2 cm is seen more.

This has caused me a lot of pain, a lot of bulling, a lot of depression etc.
But at the same time I think I still have the joy of having my 2 legs and still be able to walk, climb up and down stairs, run, bend etc. Sometimes with pain but I can say that I am blessed in comparison with other people.

Today I am a mother of 3, by cesarean. I keep working hard to get on with my life and enjoy my family.

My most recent evaluation was in 2017, in which the DR thought to see me in wheelchairs, crutches, or cane, according to my x-rays. But when he got in the room, he was amazed at my movements and that I did not use any of those. He just recommended to keep moving because that’s what has helped me and strengthened my back and my hip bones.
While I do not need it, I will not have any surgery on my hip, unless the pain prevents me from my normal life.

I’m glad to know that I can communicate with people who have or are going through similar situations. And to be able to read their stories. It has been a pleasure to tell you mine.

Thank you for your attention.





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Jacob

Jacob

Jacob was born early on February 9, 2019 at 37 weeks gestation. His birth went smoothly and it was the happiest moment of our lives....

Jacob was born early on February 9, 2019 at 37 weeks gestation. His birth went smoothly and it was the happiest moment of our lives. Shortly after he was born, we realized something was wrong with his left leg. He was happily wiggling his toes and the size of his leg looked fine, but the leg itself was bending the wrong way at the knee. This was unexpected and surprising, as all ultrasounds during the pregnancy were normal. We were immediately worried about our little one.

The next day, our pediatrician ordered additional imaging and that’s when we found out our son was diagnosed with developmental dysplasia of the left hip. During the pregnancy, Jacob’s ultrasounds always showed his little foot by his face. We thought it was the cutest thing at the time. Along the way, however, he seemed to have wedged his leg by his face early on in my belly and couldn’t get it down. It dislocated as he got bigger. At birth, Jacob didn’t seem to be in any pain with his hip dislocated so we’re extremely thankful for that.

Five days after Jacob was born, we met with our pediatric ortho doctor and had him fitted for the Pavlik Harness. I was devastated that he had to wear the harness 24/7, but my husband and I did our best to work around the harness and make sure we still had a happy, healthy baby. Bathing, nursing, and finding clothes that fit was difficult, but we made it work. We like to think our son thought the harness was a part of his outfits.

We met with our ortho doctor every 2 weeks to check the harness and had an ultrasound every month. His hip was slowly improving, with the alpha angle going from 41 to 56 to 57. At 15 weeks, we had an ultrasound that showed his alpha angle was 62. We were so excited to learn that our son was cleared to remove the Pavlik Harness!

Nowadays, Jacob loves being out of the harness and kicks like crazy! Our journey with the Pavlik Harness felt like it took forever, but now that he’s out and has healthy hips we are so grateful that he didn’t need surgery.

Thank you to this website for educating us about hip dysplasia and providing us with so many resources!





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Jason

Jason

Hi, I’m a 37 year old male, middle child, and grew up in an active family lifestyle and played many years of sports. I was...

Hi,

I’m a 37 year old male, middle child, and grew up in an active family lifestyle and played many years of sports. I was a soccer fanatic starting at age 5 playing into college. My story started when I had noticeable pain starting around 14 but simply attributed it to hard workouts or some type of groin injuries so it was ignored. At age 24, the pain increased as did the recovery time especially at night and was forced to use meds to help reduce pain. I realized the hip pain endured through the years just wasn’t normal and went for professional advice. Yes, the doc’s wanted to perform the POA due to my age, activity, and prognosis.

However, my wife was pregnant at the time and I just couldn’t take the chance of not providing for my family if surgery went unexpectedly bad. Thus far, I’ve opted to endure the lifestyle changes, the pain, and avoid this risk. I now have three beautiful children but, am limited in our activities; I coach but without much running or kicking, chase the kids in the yard but not for as long as they want me to, and don’t go on long bike rides, or take long hikes into the woods. To date, I believe this is still the right choice though admittedly struggle with this decision during bouts of severe pain (mostly caused when I’ve pushed myself too hard).

Truthfully, my first hurdle was avoiding a deep depression and trying to remain positive. It has been extremely difficult to give up on the active/sports lifestyle but, I know if could be worse (just take a look around to find someone in a dire situation) so I am also thankful and fortunate. More recently, a new concern for me is my diet; Having drastically reduced my exercise is forcing me to take a tough look into healthy eating and weight management. I’m about 25 lbs overweight and feel awful about myself. In the next day or so, I’m planning to try my first ever diet, in an attempt to get back in shape and be happier with myself.

Every six months or so, I scour blogs and treatment sites hoping for a breakthrough or advancement such as longer lasting hip replacement parts but have yet to find what I’m seeking. I’ve decided to endure the pain and ultimately go with the hip replacement option, prolonging it as much as possible. I will note that I’ve never had a dislocation and believe that if/when this happens, that it will quickly drive me to a hip replacement decision. The path forward and priority for me is clear; my family and their future. The scary part of all this is that our children may encounter the same issues and I’m extremely sensitive to any complaints they have. It’s not clear what led to my circumstances and there’s still so much to be learned about this problem. I’ve had my children checked at birth and beyond though I’m very fearful that they too could be confronted with the same challenges we have all faced. Also, I don’t limit them on sports or activity. I’m prayerful that science and technology will provide us all with better options so the decision can be easier and with less sacrifice.

God bless!
Jason





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Jaye

Jaye

I am 48 years old and had a Salter osteotomy at two years old. At 10 years old my leg was an inch shorter than...

I am 48 years old and had a Salter osteotomy at two years old. At 10 years old my leg was an inch shorter than the other. I don’t know the name of the surgery that was preformed I only know I was cut on the outside of my thigh and a rod with steel plates were put in and later removed a year later. The leg was the same length for about 7 years, or that is when I began noticing I was standing with the leg bent and leaning in towards my right side. (Left hip was the one with the surgeries) Now my leg is a half an inch shorter and the pelvis is twisted a half inch.

I lift weights and exercise daily. I have always had a certain degree of pain, or discomfort. I am however experiencing more pain and discomfort. While working out doesn’t hurt, walking long distances, which aren’t long for others, or sitting more than a half hour at a time does. Everything I research online tells me about arthritis for “normal” people.

I am sure I have osteoarthritis to some degree but the research results aren’t in the same area. Probably because my hip isn’t in the right area as everyone else is. I’m not really sure I want to risk surgery at this point. My fear is if the hip is replaced and put in the right place how is that going to effect my pelvis and nerves.

Will I feel different being normal?

Will it be uncomfortable to be like other people.

Does that make sense?

I am also flat footed. The pain is in front where my hip is. You can see the difference if I were to show you, it’s in back of me, on the outer left side of my but. My lower back hurts. I have a lot of muscle stress on the left middle part of my spine and shoulders. I get a massage monthly and they said they can not completely relax the muscles they tighten right back up. My knee on the inside hurts my shine and ankle. It’s all related and the flat feet have a lot to do with it as well. I’m wondering if anyone has had this surgery and how they are doing/any other related surgeries…where and when I may be heading in the future.

I’m not a big surgery type of person so I’d like to hold off as long as I can. My oldest in getting married in September and nothing is going to stop me from dancing up a storm…I’ll pay the next day but that’s fine with me. Any help or shared stories will be very much appreciated.





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Jen Lesea-Ames

Jen Lesea-Ames

Jen Lesea-Ames, Founder, The PAO Project and Editor, “Onward! Navigating Hip Dysplasia, PAO Surgery, and Beyond” A Bay Area, CA native, I moved to Boulder,...

Jen Lesea-Ames, Founder, The PAO Project and Editor, “Onward! Navigating Hip Dysplasia, PAO Surgery, and Beyond”

A Bay Area, CA native, I moved to Boulder, CO, in 1996 to pursue a graduate degree in Kinesiology. I was a certified personal trainer, as well as a running and triathlon coach, for more than 17 years. I had competed in many triathlons and running races. Little did I know that I had hip dysplasia, a congenital disease that I was not diagnosed with until March 2013 at age 39.

After my diagnosis, I saw a rapid decline in my health, and I suffered with severe chronic pain for over a year. My only hope was to consider periacetabular osteotomy (PAO) surgery. 
After meeting with six orthopedic surgeons across two states, I had my first PAO surgery on my left hip on April 8, 2014, and then on my right hip on December 16, 2014, with Dr. Michael J. Bellino at Stanford Hospital and Clinics (Palo Alto, CA).

Here is my most recent X-ray at my two-year post-op appointment, fully healed:

I am now enjoying an active, pain-free life. Below is a picture of me finishing the 2016 Ragnar Trail Relay in Snowmass, CO. I ran 14.5 miles on trail with 3000 feet elevation gain!

When I was first diagnosed with hip dysplasia, I initially thought it was a disease found only in dogs. When my orthopedist told me otherwise, I did an online search of “hip dysplasia” and the top three of five search results were for canine hip dysplasia. It was at that moment I realized the gap in awareness of human (and in particular, adult) hip dysplasia. Tapping into my inner entrepreneur, I knew that by sharing my story and others’ stories, I could help increase awareness of adult hip dysplasia. Hence, The PAO Project (www.thepaoproject.com) was born. Eventually, the anthology “Onward! Navigating Hip Dysplasia, PAO Surgery, and Recovery” was published in December, 2015. It’s available on Amazon here.

Here is picture of me with the book on the summit of Mt. Audubon, elevation 13,229 feet. (July 2016)

My next steps are to create a workbook to help those who are facing PAO surgery and to launch a national PR campaign for “Onward!” and The PAO Project to further increase awareness of hip dysplasia.

If you are interested in getting involved with increasing awareness of hip dysplasia or getting involved directly with IHDI, my advice is to be clear on how you can contribute and don’t be afraid to make phone calls or send emails to ask how you can help.

If you find yourself (or your child) newly diagnosed with hip dysplasia, educate yourself as much as possible through the IDHI website, and join online support groups (there are free Facebook support groups for hip dysplasia and periacetabular osteotomy (PAO)). Get opinions from at least two to three orthopedic surgeons specializing in hip dysplasia/hip preservation. Always be an advocate for your (or loved one’s) health and listen to your instincts!

Onward, warriors!





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Jennifer

Jennifer

When I was born both of my legs were turned backwards at the hips. My left leg at a 45 degree angle and my right...

When I was born both of my legs were turned backwards at the hips. My left leg at a 45 degree angle and my right at a 95 degree. I was put in shoes that had a bar between them inorder to turn my legs back around. For two years I had to wear these shoes. My parents were told I would never walk. But I did, I lived a normal healthy life.

I was in my 20’s when I had my first child and how most woman have children naturally. Because my hips had shifted completely out of place I had an emergency c-section. My hips never recovered. Physical therapy, braces ect did nothing but cause pain. Now in my 30’s after two kids, I often find myself losing use of my legs.

I have pinched nerves in my hips and lower back, I have shrank in size. I live in pain and hurt every day. I am unable to stand most days, so keeping a job has been very hard for me. I have applied for disability, but the people who work there have no idea about hip dysplasia and what is can do.

Yes people can walk will help and there are minor treatments, but if you have it you know it never goes away. Its never truly fixed.





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Jessica

Jessica

My hip dysplasia journey is much the same as thousands of other families in Australia and around the world.  My husband and I had a...

My hip dysplasia journey is much the same as thousands of other families in Australia and around the world.  My husband and I had a beautiful new baby girl who happened to have two clicky hips when she was born.  I didn’t know what hip dysplasia was and I received a huge shock when my tiny little Mackenzie was put into a Pavlik Harness when she was 8 weeks old.  She had mild dysplasia in her right hip and her left hip was dislocated with severe dysplasia.  My husband and I were given little information (or perhaps we just didn’t take it all in at the time) and I was 100% devastated – I cried for two days straight.  Like other parents I knew that “it wasn’t that bad” and that “it was for the best” and “there are families experiencing much worse” but in all honesty, I found the whole experience to be traumatic.

In the beginning I wasn’t at all prepared and I struggled with everything.  I couldn’t find clothes to fit, I couldn’t find a good breastfeeding position, I couldn’t give my little baby a bath and her sleeping bag didn’t fit properly anymore.  Nappy changes were now really tricky, and she had an epic blowout on day 2 which I unsuccessfully tried to spot clean from her white harness.  Then we found out that Mackenzie’s femoral nerve had been pinched after her left leg stopped working.  This was all in the first week!

Then week 2 came along and suddenly, it became much easier.  We adjusted our usual habits, routines and baby clothes.  In no time at all we were all settled, and life went on.  Sure, I stressed about scans and reviews but the day to day stuff was a breeze.  Mackenzie was fine with the Pavlik Harness and so was I.  The total change in mindset that happens between weeks 1 and 2 is truly amazing.

Mackenzie’s treatment went from 24/7 to 23/7, then nights only over a period of 8 months.  At the time of writing this, Mackenzie is 3 years old with healthy hips.  In hindsight, it wasn’t so bad at all and we are grateful that we were able to treat this problem with just some straps and Velcro.  Mackenzie’s milestones weren’t impacted, and she wasn’t left with any emotional scarring (that we are aware of).  She has no memory of it whatsoever.

Hipsleepers is Born

During Mackenzie’s treatment I had to scour the internet for solutions to practical problems I encountered with the Pavlik Harness.  I desperately tried to find out the answers to questions like:  How can I stop nappy blowouts? What clothes can I dress her in? What sleeping bags will fit? What car seat do I need? etc etc.  It was really difficult, and I frequently bought things hoping they would work with the harness, only to find they didn’t.  I could have really used a “hip dysplasia shop” and I especially wanted to get my hands on a nice, thick sleeping bag that was just like the ones you find in baby shops but wider.  I had no luck.

Fast forward a year after Mackenzie’s treatment finished.   I was working as a lawyer for a small Melbourne firm.  I found the job to be stressful and difficult to manage with two little kids.  Desperate for a change, I decided to leave the legal profession behind and start something new.  This is how Hipsleepers came about.

My original idea was to sell extra wide sleeping bags in various warmth ratings for babies receiving treatment for hip dysplasia all over the world.  That idea quickly evolved to include swaddles, clothes and other useful things that I wished I had easy access to during our hip dysplasia journey including winter weight legwarmers, onesies with a high cut leg hole, nappy covers, wide baby bean bags, nappy change stuff, etc.  I got my mum, Kathy, on board as my business partner which was an added bonus as we work well together.

I have also set out to show parents the lighter side of life with a baby receiving treatment for hip dysplasia.  A lot of the stories and information online (like my story above) refer to the struggle and hardship.  I like to find the humour in life and I do my best to produce posts for our blog and social media that families might find useful, interesting and perhaps even funny!

Hipsleepers has been open for about 9 months now and it is by far the best and most rewarding job I have ever had.  We frequently receive happy, positive feedback from customers around the world which sincerely means the world to me. I love to know that our little business is making a small difference during a difficult time!

You can find us here:

https://www.hipsleepers.com.au

And follow us here:

https://www.instagram.com/hipsleepers_hipdysplasia_shop/

https://www.facebook.com/hipsleepers/

-Jess





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Joan’s Story

Joan’s Story

I was born with DDH and had a plaster cast when it was discovered. Only one hip joint worked but I walked fine till age...

I was born with DDH and had a plaster cast when it was discovered. Only one hip joint worked but I walked fine till age 30 when osteoarthritis in hips meant I had to use a wheelchair for 2 years. Got walking again using walking stick for a while. I had my third child aged 42 and walked with no help but increasing pain till aged 70 when got wheelchair again so now no pain and I live alone and have just written my memoir ‘Winning’





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Jodi

Jodi

HAVE A QUESTION: I am 43, have left hip dysplasia that was diagnosed one year ago. Due to the loss of cartilage and deterioration of...

HAVE A QUESTION: I am 43, have left hip dysplasia that was diagnosed one year ago. Due to the loss of cartilage and deterioration of my joint, I have to have a THR. I have been getting cortisone injections, which have helped immensely. My first injection lasted 8 months. However, my second injection was three months ago, and the pain is coming back. Daily pain. Hurts to sit too long, and I sit for a living. Wake up with pain, always achy. I have pain in my buttocks, off-centered to the left, and I have some pain going down my leg now on the inside thigh that feels like a nerve pain (that’s the only way I can describe it). Are these symptoms anyone else has experienced?

My surgeon told us in August that I will need surgery “within two years,” and it is all dependent on my pain. Since I am young, we are all trying to wait as long as possible for the THR. There are so many factors I am considering as to when. I know there’s no crystal ball out there to say GO NOW, or WAIT, etc. But I really would like to talk to anyone who has a similar situation for advice. My mother had a left THR three months ago from hip dysplasia, but she is 68. Big difference in age.

Can anyone give me advice, info, their personal story so I have something to gauge my situation on? I am discouraged today because it’s only been three months, and the cortisone is not working like the first shot.

And to top things off, I am getting married in July next year. I am so worried if I wait, I won’t be able to walk down the aisle (beach wedding) on my wedding day. I’m not sure if I should wait, or just schedule the surgery.

The other factor that is huge is cost. I have a high-deductible health plan, and after meeting with my insurance agent, my costs are going up next year, along with everyone else’s. I’m afraid if I don’t get the surgery done at least next year, that I won’t be able to afford it in 2018.

Sorry for the long story. Can anyone help me? I am feeling so down right now and unsure what to do. Thanks in advance.





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Jordan Joy

Jordan Joy

I wanted to share our story with you about our beautiful baby girl. I thought everything was perfectly fine. We went to the doctor for...

I wanted to share our story with you about our beautiful baby girl.

I thought everything was perfectly fine. We went to the doctor for her 4 month shots and the doc felt her hips and made a face. She said she can hear something popping. i started getting worried, i thought everything was ok. She told me to make an appointment ASAP with a specialist so they can do a ultrasound.( she is too young for a xray, they do those after the baby is 6 months).
So we went and did that. Of course the nurse who did the ultrasound couldn’t tell me anything, she said i will hear from my doctor tomorrow. Tomorrow felt like forever.

Anyways, the doctor called and said both of her hips are mildly dislocated. BOTH?! That Friday i had to go back to the specialist to get a harness for her. The specialist told me it’s only her left hip and it is pretty bad. I am going to believe the specialist obviously. So… I freaked out. I felt like it was the end of the world. We just got JoJo to sleep through the night. The 1st few days were a complete nightmare, i am not going to sugarcoat it for you. BUT…its been a week and it is getting better each day.
She still has not slept through the night since her harness but she only wakes up just once throughout the night. She is very uncomfortable. She wakes herself up. Heard that was normally. We go every week for a checkup which is $ 50 co-pay :(. But the good news of the story is at least they caught it in time, where she will only need a harness and no surgery.( if all goes well)

Just relax and I’m sure you are taking worse then your baby is. And everything happens for a reason.





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Jordyn

Jordyn

Hi, my story started 6 years ago, when I was involved in a car accident, in which I was thrown from the vehicle. The accident...

Hi, my story started 6 years ago, when I was involved in a car accident, in which I was thrown from the vehicle. The accident resulted in many fractures around my pelvis, and it took months to heal, but my bones all healed together quite well.
About a year after the accident, I started to feel pain in my hip. I went back to my doctor, and x-rays were done, and I was told that my bones looked good and that nothing was wrong. Well, it still hurt, so over the course of the next five years, I went to my primary physician, who told me to get massage therapy. I would also go to the urgent care, where more x-rays were done and again, I was told nothing was wrong, and that I was not going to be prescribed pain killers(the urgent care doctor assumed I was just pill seeking).
I then tried another option and went to an orthopedic doctor in a city in another state, where a student doctor saw me, did more x-rays, and again, I was told nothing was wrong, that he was not going to prescribe me pain killers, and that I could try physical therapy if it “really hurt”.
Well, I had pretty much given up on doctors believing me that something was wrong, as several doctors did not take me seriously and only thought I was pill seeking. So I stopped trying to get help.
Well one night at work, I was walking and my hip slipped out of socket and I could feel it, and it was extremely painful. I went back to my primary, and told her my hip hurt, she told me to go back to the orthopedic doctor. So, back I went, and did more x-rays. And once again, was told my bones were fine and nothing was wrong. When finally, a second doctor, suggested I do an MRI, to which I agreed.
After the MRI, they called me in, to tell me that my labrum is so torn, that they can’t fix it and I would need to see a specialist. So I was referred to an amazing doctor in Denver, Colorado, 6 hours away from where I live.
So I wait a few months for my surgery date, to reconstruct the labrum. Once arriving in Denver, the day before surgery, I meet with the doctor and he wants to do x-rays in his office, it was his protocol with traveling patients.
After the images were taken, the Dr. comes in to talk to me, he is very somber and apologetic. He tells me, that I have hip dysplasia and that I was born with it, and that he cannot replace my labrum, without addressing the dysplasia as well. So now here I am, looking at two operations, instead of just the one.

So the next day, I had my labrum reconstructed, then 10 days later, the POA. I am currently 9 days post op poa, and it has been a rollercoaster. I stayed in the hospital only 4 days, and I did not get out of bed till the second. I was shocked that i could not lift up my leg and move it forward, i would inch my leg using my toes.
I felt defeated by this operation, like I would never move my leg the way it used to, but finally, it moved, and that gave me motivation and hope for the next day. I made it home finally, and I was exhausted, I mean every time I would stand up, i felt winded. I also have terrible anxiety, so the feeling of being winded, every time I got up, made me nervous that something was wrong.

I started thinking to myself that maybe I was anemic, or had pneumonia, or that I had a clot in my lungs. That really got to me, so two days ago, I went to the hospital, with a heart rate of 130, low blood pressure, my hands were white and clamy, and I was having trouble breathing, all the symptoms of pulmonary embolism.

They gave me iv fluids, and took a few samples of blood, listened to my lungs for fluid, and did a CT scan to check for clots. My blood results came back, and my oxygen, hemoglobin, kidneys, EVERYTHING, came back perfect and normal. I was not anemic. Then the results of CT came back, no clot. My heart rate during this time went down to my normal 80bpm.
I was giving myself a constant panic attack, because I got inside my head about this recovery, and my mind got the best of me. But at least I knew for sure, that nothing was wrong with me(besides being a little dehydrated).
So, I am trying to look at this, as one day at time, I know I will have good days, and bad days, but as the days go by, I can check it off as being one day closer to where I want to be. And before I know it, I will be walking just fine again.
I hope this story helps someone else to know that what they are going through is normal, and to listen to your body, and rest, rest, rest!! Every day is a little but better then the day before. And you can do this!!!!





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Jordyn Dillabough

Jordyn Dillabough

My name is Jordyn Dillabough, I am 20 years old and live in Winnipeg, Canada. I was first diagnosed with hip dysplasia at two months... My name is Jordyn Dillabough, I am 20 years old and live in Winnipeg, Canada. I was first diagnosed with hip dysplasia at two months old. After a few months of wearing a brace post diagnoses it was thought to have been self corrected. Growing up I do not remember having pain or noticing anything different. It was after I ran at a track and field event in middle school that someone watching in the stands pointed out my different gait (they worked in healthcare) to my mom. This began the process of being diagnosed with moderate to severe hip dysplasia for a second time. After meeting with an orthopaedic surgeon at the age of 12 it was decided that I needed to undergo a pelvic and femoral osteotomy on my right side. On August 22nd, 2013 the surgery was performed and deemed successful. After using a wheelchair, walker, crutches, one crutch, and then a cane I eventually started to walk without any aid during February of 2014. After a few more months of recovery I returned to normal life! However, during the summer of 2018 my left hip began to give me trouble. Overtime I developed bursitis in both of my hips, arthritis in my left knee and watched my overall health begin to deteriorate. At 18 years old getting out of bed, driving, picking up groceries at the grocery store, etc. became difficult to the point where more often than not I could not do it. I was declared a candidate for a periacetabular osteotomy in Calgary, Alberta but unfortunately due to the backlog of elective surgeries from the second wave of covid-19, the waitlist became terribly long. On November 27th, 2020 I chose to have a full left hip replacement. My surgery was deemed essential and I was able to finally have the operation that I had waited over two years to have. It is currently January 14th, 2021 as I write this and I could not be more excited to start living a less painful day to day life. The emotional, mental, and physical toll that hip dysplasia takes is immeasurable, however, the people that you meet in the waiting rooms, the relationships built with physiotherapists, family doctors, surgeons, and specialists is also like no other. The community will last a lifetime, and rest assured that there will be a better tomorrow on days where the pain seems unbearable.



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Josie

Josie

Hey, I’m Josie and I have bilateral hip dysplasia. All of my childhood I grew up with ‘growing pains’ … Sound familiar? No one in...

Hey, I’m Josie and I have bilateral hip dysplasia.

All of my childhood I grew up with ‘growing pains’ … Sound familiar? No one in my family has any hip issues so no one stopped to think it would be anything other than growing pains. Why would they? The paediatrician checked my hips when I was born and there’s no way of telling now, but they either missed it then, or I have developmental hip dysplasia where they just didn’t form correctly whilst I was growing.
For me, growing up with these ‘growing pains’ meant carrying on with activities despite the pain. Learning to put it to the back of my mind otherwise life would’ve just stopped. From a young age I had to learn my pain limits and what I could manage physically.
I stopped growing in height when I hit 11 years old however the pains didn’t stop. My Mum was convinced I still had another growth spurt left so the ‘growing pains’ explanation continued. I am 5ft 3″. I never had that growth spurt haha.

When I hit 15 years old, the pain was just getting too much. I remember vividly the time I was walking home from seeing some friends and my legs just stopped moving. The pain became too much, and my legs just stopped moving. It was that day, I decided I HAD to take myself to see someone about this pain!
The Dr I saw, referred me to my local Hospital who unfortunately were clueless about what to look for let alone how to help me. They gave me an X-Ray, showed me the results and told me I was fine. A little while passed and I received a letter in the post telling me that they had referred me to a specialist hospital where there was a consultant who knew a lot about hip problems and could possibly help me. Finally, I felt like I was being taken seriously!!
I went to see this consultant who did tests such as an arthroscopy which I had to be put to sleep for and I had more X-Rays before they finally diagnosed me with Bilateral Hip Dysplasia. The physician also diagnosed me with Hypermobility, which often comes hand in hand with Hip Dysplasia.
After being diagnosed, I was absolutely crushed if I’m honest. I think I wanted to be told it was in my head and I would ’grow out of it’. Instead I was told I had a lifetime of hip problems and operations to look forward to. I was offered an operation called a Periacetabular Osteotomy (PAO). The operation meant having my pelvis broken in 3 places and screwed together. I was told the waiting list was very long which I was relieved to hear so I agreed to the operation, went home and I went into denial. Many long painful years went by while I tried to carry on my life like I was fine before I realised, I REALLY needed help now. The pain had worsened, and I was unable to do half of the activities I had been doing without a clunk or a pop and agonising pain. I called the hospital and asked where I was on the waiting list, only to discover I was never actually placed on it.
Soon after discovering I wasn’t on the list, I discovered I was pregnant, so my hip plans had to wait!
5 years later, I had my Right PAO on the 5th Oct 2019. My daughter was 4.5 years old when I had my first surgery. A year later had my Left PAO done on the 24th Oct 2019. Both of these surgeries were with a physician who sees adult patients, as my previous physician only deals with the pediatric patients, which I was when I was diagnosed.

As Hip Dysplasia often happens in the first-born daughter (Which it did in my case), I was naturally concerned for my daughters’ hips. I pushed for 4 long years to get her checked and I am pleased to say that her hips are growing perfectly so far! She’s now 5 and a half and showing no signs of hip pain as of yet.
I was diagnosed with Hip Dysplasia when I was 15 and I wasn’t treated for it until I was 24.
I’ve faced many challenges and struggles while living with Hip Dysplasia and Hypermobility. Both before and after surgery and both physically and emotionally.
I’ve faced many challenges while living with Hip Dysplasia, both before and after surgery and both physically and mentally.
Physically, I’ve struggled with sleeping, walking, exercising, physio, nerve damage, learning to walk again, driving, even sex sometimes. Emotionally, I’ve struggled with being misunderstood. No one can relate to something they don’t understand. Having to leave my job because I was a sports coach in a primary school – It was too physically demanding in the end, which left me with the repercussions of money issues which always (In my case at least) leads to poor mental health. I also lost that socialising aspect of my work along with it. Every part of Hip Dysplasia, even the ones not mentioned, can leave you feeling isolated and anxious.
After my first surgery, I had to find ways to get myself out of the hole I felt I was living in. I had to keep reminding myself to slow down and be kinder to myself. I wanted so much to be better that I was rushing and pushing my body too far and too fast.
My anxiety to leave my front door became overwhelming so when I started driving, I decided to get myself into a gym instead, where I found myself socialising with the lovely staff and feeling much more motivated to do my physio. I also had the support of the staff when I felt clueless.
I started volunteering at my local church. A charity that used to run an art club for vulnerable adults had their funding cut so the church took it over and needed volunteers to help supervise and keep it going. I met some wonderful people there, volunteers AND the local people who went.
Before my surgery, I found a Facebook page that had thousands of people who live in the UK and have Hip Dysplasia. A lot of them have experienced a PAO or have one pending. It was the best thing to happen to me regarding my hips, in such a long time. I finally had a community of people who knew EXACTLY how I felt. It was such a relief! I noticed that a few people had also made Instagram accounts for their Hip Dysplasia journeys, so I decided to do the same.

(@josies_hip_dysplasia_journey) I’ve had it over a year now and I have some wonderful followers that I like to call ‘Cheerleaders’ because they are amazing at encouraging you and supporting you. I often see them commenting on other accounts too with the same amount of love and support; all while going through their own journeys too. It’s a wonderful place to be.

If you tell someone you have a headache, they know how to help you and they can relate to your pain. If you tell someone you have cancer, they may not be able to relate to your pain, but there is enough information out in the world now, for people to have a good understanding of how to help you ease your pain or at least keep you comfortable. If you tell someone you have Hip Dysplasia, they ask you what it is, listen in curiosity and move on. Only people who suffer with Hip Dysplasia, understand people with Hip Dysplasia. I hope that one day this changes, but most of all, I hope it can eventually stop being missed in infants so can be prevented in adults. Hip Dysplasia is more common than people know, and it deserves to be better known about.





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Joyleen

Joyleen

Hi everyone! My name is Joyleen and here is my seven-year hip dysplasia journey: August 2011: 1st left labral repair with Surgeon #1March 2012: 2nd...

Hi everyone! My name is Joyleen and here is my seven-year hip dysplasia journey:

August 2011: 1st left labral repair with Surgeon #1
March 2012: 2nd left labral repair with Surgeon #1
July 2012: Bi-lateral hip dysplasia diagnosis
May 2013: 1st Left Periacetabular Osteotomy (PAO) with Surgeon #2
November 2013: 1st Left Hardware Removal with Surgeon #2
April 2014: Overcorrection of PAO diagnosis
October 2017: Left PAO Revision with Surgeon #3
December 2017: Left labral reconstruction with Surgeon #3
May 2018: 2nd Left Hardware Removal with Surgeon #3
December 2018: Left Total Hip Arthroplasty (THA) with Surgeon #3

Disclaimer #1: These dates are not meant to induce fear or anxiety. My hope is that every reader will see the differences in each story and will find strength to push through a difficult season.

Here is my story:

My journey began in Summer 2011 when I was diagnosed with a left hip labral tear. For those of you who do not know what the labrum is, it is cartilage in your hip joint (and shoulder joint) which deepens the hip socket where the head of the femur sits in. Anyways, I had decided to have this repaired prior to my junior year of college. But my recovery after this surgery did not go as expected. In fact, I had re-torn my labrum less than six months after surgery. So, my first surgeon and I decided to correct it again with hopes of me returning to my active lifestyle.

Unfortunately, I never fully recovered from my second labral repair. My first surgeon couldn’t figure out what was wrong and mentioned there was nothing left he could do. Emotionally, I was frustrated, annoyed, and felt defeated. I had been on crutches for most of my junior and senior year of college. However, instead of remaining in this state of mind, I decided to pursue more opinions regarding this problematic hip.

Because of my persistence, I met a physician who was able to diagnose me with bi-lateral hip dysplasia! Now, I had no clue what this was at the time, so I decided to research my options. I found that it could only be corrected through more surgery: a Periacetabular Osteotomy (PAO) or Total Hip Arthroplasty (THA). I thought since I had two labral repairs, might as well pursue the THA.

WRONG. The joint replacement doctor I met with was clear that he’d never perform this surgery on a 21-year-old and referred me to a pediatric orthopedic surgeon. The pediatric orthopedic surgeon explained in detail the PAO, its recovery, and explained we could move forward with it once my school year was over.

Third surgery was down in the books and it was HARD. The pain that my second surgeon described was right on the money. This was unlike the labral repairs I had gotten – it was worse.

Disclaimer #2: I have a very low pain tolerance! Everyone handles this pain differently.

The recovery was a tough one, but I was blessed and humbled to have a strong support group to cheer me on. I was determined to live a normal life when at about 5 months post-op, my hip pain returned – back to the surgeon I went. He explained that my screws could be causing the pain and that since my bone had healed, we could remove them. Surgery four arrived and it was nothing compared to the other surgeries – it was so much easier! After my hardware removal, it was time for me to live my life and man was it getting good; I was engaged to the man of my dreams and we were beginning to plan our future.

At ~10 months post-op from my PAO, I returned to my surgeon complaining about more pain. We tried pain management which failed so another MRI was ordered. This time, it came back clear. It was time to get a second opinion. My second opinion told me that my hip had been overcorrected (say what?!) and that I needed a revision PAO.

Disclaimer #3: My 2nd surgeon is fellowship trained. This complication is very uncommon but can happen to anyone. Even the most experienced surgeon has had this complication.

I called my surgeon and told him what had been said. He encouraged a third opinion. The third opinion told me that although my hip was overcorrected, there was a 50-50 chance a revision PAO would work. Seeing as there was no reproducibility with this procedure, we opted out and I decided to just live with the pain.

Four years later…
I am a wife, a mom to an 18-month-old, and had recently returned to work full time. It was then that I really noticed that my hip was hurting badly; I was limping by the end of the day. Initially, I thought my muscles were causing the pain, so I returned to Physical Therapy (PT). A few weeks in, the pain was still there – so it was time for a diagnostic injection. Since I had gotten some relief from the injection, my surgeon ordered another MRI. The results showed a third labral tear. My heart sank. I knew exactly what that meant. No amount of PT or decrease in activity was going to fix the tear. I needed more surgery. To my surgeon I went…

We spoke about a few options: a scope, a surgical dislocation and arthrotomy, or as a last resort, a revision PAO. Instead of making a decision, we decided to get another opinion. This surgeon examined my hip, reviewed my imaging, and said: you need a revision PAO.

TEARS. Not literal tears but I was definitely crying on the inside. I did not WANT to go through that again. It was different this time too – I was a wife and a mom; how could I possibly go through this again? Between surgeon #2, this second opinion, and a surgeon I had seen years ago, the consensus was a revision PAO with surgeon #3 since he had some experience of performing a revision PAO. Now the tears were real…

My revision PAO date arrived and I was nervous, scared, and terrified of the recovery. I remember waking up and my husband telling me my labrum was not torn, it was shredded. I needed another surgery to repair this. Surgeon #3 later explained that my labrum was beyond repair and I needed a labral reconstruction – we could potentially do this in eight weeks. Talk about amazing news to hear after major surgery!

The recovery was much harder this time around. I had to rely on a squad to help my husband and I with the cooking, cleaning, pick up/drop off of our toddler, babysitting, etc. It was intense. It was not fun. I felt alone and defeated often. I also found myself going crazy at home because I couldn’t do anything – I thought I was failing as a wife and mom by being in this condition.

Luckily, the squad I relied on constantly reminded me that it was only a season. Surgery number six arrived and although I was still experiencing post-op pain from my revision PAO, I was focused on the end goal, living pain free. The labral construction was successful, but the recovery was slower than ever – no surprise there!

I remember I felt like this recovery was going to break me. I was not meeting the typical goals for how far along I was. Again, defeated and frustrated – it was really obvious at this point. I had many ugly cries and meltdowns. Luckily, my care team never gave up on me. Instead, we tried many things: hydrotherapy, PT, injections, deep tissue massage, you name it.

At six months post-op from my revision PAO, we decided we could remove the screws. I was still on one crutch (long time, I know) and still in pain, but another step forward to being back to normal. A few weeks later, I finally weaned off of that one crutch and continued with physical therapy. My muscles were getting stronger but extended standing, sitting, and walking for long periods of time aggravated my hip. In addition, my right hip was starting to hurt as a result from overcompensating. Mind you, I have hip dysplasia in my right hip along with Femoroacetabular Impingment (FAI).

I returned to my current surgeon. We had discussed doing a PAO and scope on my right hip in December but also discussed a diagnostic injection in the left hip – if I had relief, it would confirm that the pain is coming from my joint. If not, I’d need additional testing. I had my diagnostic injection and had relief. Time to talk to my surgeon. We had decided that it wasn’t worth proceeding with my right hip PAO and scope without addressing my left hip – I would be miserable. The only thing left to do at this point was a Total Hip Arthroplasty/Replacement (THA/THR).

Now, the purpose of ALL of these surgeries was to delay the THA. To hear these words were heartbreaking. As I write this, I am still struggling to swallow this big pill. Will this recovery be much easier than past surgeries? Yes. Will I finally get relief? Yes. You would think this would be an easy decision but it’s not… it’s been an exhausting journey. All of these emotions and thoughts are completely normal. It’s okay to be afraid of making the wrong decision especially when I know that I’ll need another THR. However, my end goal remains the same: I want to live pain free. I want to be able to walk in the grocery store without limping at the end. I want to run after my toddler and future kids without wondering if it’ll aggravate my hip. I would LOVE to return to one of my passions, dance. In the end, will I get through this? YES!

I know my story is long, complicated, and a bit crazy. However, it remains my story. And despite this being one of the hardest things I’ve had to face in my life, I know it will get better. I am hopeful and convinced that I will be able to live a normal life. So, here is some encouragement for those of you reading this story:

1. Advocate for yourself. Your voice matters – never settle!
2. Accepting help doesn’t indicate weakness. It’s a sign of strength.
3. Stay positive. Setbacks are always a possibility, keep moving forward!
4. Do not compare your story to others. Everyone’s story is different.
5. You are strong and capable of getting through this!

I’ll end my story with a quote that has helped me tremendously – I hope it can provide comfort to you all as you write your own story.

“You never realize how strong you are until being strong is the only choice you have.”





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Julie

Julie

I am amazed at how many stories on here are so similar to mine — so many people in their 40s who are having total...

I am amazed at how many stories on here are so similar to mine — so many people in their 40s who are having total hip replacements. I would never have thought that I’d be contemplating a THR at my age, but I am 47 and have been suffering through progressively worse hip pain for the last 4 years.

I walk with a limp, but it’s from a combination of pain and the fact that my leg lengths are seemingly about an inch different. The doctor did a hip to ankle scanogram to see if my femurs were different lengths (nope), but apparently my spine has curved, from what I have no idea, which is giving the appearance that my left leg is longer. If I stand straight on my right foot, my left knee must be bent. If I stand straight on my left foot, my right heel is an inch off the ground and I’m leaning left. (Side note: I was in the marching band in HS and we had to stand at attention (feet together, stand straight and tall) and I never remember having this issue with leg length discrepancy. It’s definitely onset in the last few years.)

I’ve done the physical therapy and cortisone shots (relief lasted for 2 months). An orthopedist diagnosed me with severe arthritis and hip dysplasia (shallow socket), said my cartilage was gone and I have bone spurs, and advised that repeated cortisone shots were only going to get less effective (yep, second one lasted 6 weeks and provided less relief than the first). He prescribed physical therapy again (went through PT first time in 2014) and said I needed to get my hip muscles in the best possible condition before he would consider doing surgery. So I suffered through the painful PT for 3 months. My muscles may be slightly stronger, but the pain remains.

I researched other orthopedists and got a second opinion on my diagnosis and treatment. This hip specialist confirmed the diagnosis, and said it was only going to get worse, so it was up to me how long I wanted to “put it off” – “it” being THR. This doctor is highly recommended, and she performs the anterior approach (no cutting muscles) excellent video here: https://youtu.be/MTJK9tdSsQY , so I’ve decided to do the THR next month.

Since I’m probably going to outlast the replacement parts, I asked her at my consultation about what parts need to be replaced. The metal stem, femoral head, and acetabular component are titanium and don’t need to be replaced – it’s the acetabular “liner” which is the polyethylene piece equivalent to cartilage, which can/will wear out over time depending on how much wear and tear you put on it. Easy peasy, right? Yeah, as long as they continue making the parts for that particular set of hardware. She warned, as they come out with new hardware and procedures for THR, they stop making the parts for your hardware. So I told the surgeon, jokingly, “ok, so I’ll just buy a spare liner and keep it in my safe deposit box until I need it.” To my surprise, she said “well, believe it or not, they have a shelf life and expire.” So much for my brilliant solution. So I guess I’ll just cross that bridge when/if I come to it. What other option do I have.

Very glad to have stumbled upon this site with so many similar stories. I’m even more confident that I’m doing the right thing and it’s not necessarily “too soon.” Mobility and quality of life NOW is what matters.





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Julie

Julie

I was diagnosed with hip dysplasia as an infant (1983) when doctors were not so informed on the issue, I did not begin to have...

I was diagnosed with hip dysplasia as an infant (1983) when doctors were not so informed on the issue, I did not begin to have problems until I hit adolescence and that is when I had my first hip surgery. I experienced popping and clicking with pain and had some bone shaving of the hip socket and some cartilage replacement done, my right leg is a quarter of an inch longer than my left leg and I have to wear a heel lift in order for my body not to be leaning to the left too much which causes more pain.

I am now 32 years old and have osteoarthritis in my right hip and just had my third hip surgery September 25th to repair a laberal tear which could not be repaired because my laberal muscle is pretty much gone from my surgery 3 years ago, the doctor who did the surgery shaved some bone off of my hip ball joint to prevent anymore tearing of that muscle (which hopefully works).
I have tried physical therapy, injections in the hip which only lasted about a week and stayed away from sports and was told to stick to swimming. I have learned that being informed on hip dysplasia could have prevented most of my problems that I now experience.

Many doctors even now do not know much about hip dysplasia and there were many times where I was brushed off by doctors, which was very irritating and took me almost 2 years to find a doctor who finally did some x- rays and an MRI and found that I was not lying about my symptoms. I found out that my niece who is now 8 years old also has hip dysplasia and I am trying to gain as much information as possible for her and her mother so she can prevent problems. She was diagnosed as an infant and wore the special brace where her legs were to her sides like a frog.
I am terrified that I will have to have a hip replacement in the next 10 years and hopefully from doing research I can help my niece from experiencing pain and multiple surgeries as I have. I am hoping that this last surgery will provide some relief but I am not too sure. I have learned that hip dysplasia may cause mild scoliosis of the spine depending of the severity of the dysplasia.





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Juliet

Juliet

I’m 41, with recent onset congenital bilateral hip dysplasia. This is what happened: On June 30, 2010, I was a leasing agent with a property...

I’m 41, with recent onset congenital bilateral hip dysplasia. This is what happened:

On June 30, 2010, I was a leasing agent with a property management company and we were having a busy day doing move-ins and move-outs. Around 6:00 PM I developed a severe pain in my right hip, to the point where I was limping and dragging my right leg behind me. It was a hot day; and I was wearing sandals, to which my boss and I attributed the right hip pain. I wore shoes with better support after and that seemed to be that. Everything was fine until…

In February and March 2011, I had a different job working as an office administrator. I took the bus to work and while the walk to the bus was okay, the walk from the bus into work (8 blocks) was painful and most of the time I limped. After sitting at my desk for an hour or so, the pain disappeared. It was only in the mornings, and by the end of March had stopped. Everything was fine until…

In Spring 2012, my routine gardening tasks became excruciatingly painful on my right hip/knee/leg and often I couldn’t walk afterwards. Around this time, regular walking started including a stabbing pain inside my right hip joint. There was no rhyme or reason. Some days it was every 100 steps, some days every 50, other days every 3 or 4. Always when I let my guard down and forgot about it. I made an appointment with my GP that May.

Another thing that used to happen to me is I would fall down, usually one or twice a year, and skin my knees like you do when you are a kid. Yes I was sober 😉 I always thought I had tripped, or stepped too far on the outer edge of my foot, wasn’t paying attention, etc. The last time I fell was in August 2012.

My GP was reluctant at first, because of course when I went to see her I wasn’t limping. After some x-rays that showed nothing, I kept insisting the pain was in the joint and she agreed to send me to see a orthopedic surgeon, and schedule me for an MRI in January 2013. I went for the MRI, but missed getting a fluoroscopy injection, so I needed another MRI with the injection, which took place in June 2013.

The first surgeon I saw diagnosed right hip dysplasia at the end of June 2013, and said the left hip was fine. I cried. I didn’t ask all the questions I should have, I was unhappy about living with the pain. Imagine if someone told you you were going to be stabbed in the hip joint several times today, but you have no idea when – yuck – it made physical movement unappealing. Once I turned slightly to the right, and it hurt so much I couldn’t breathe, I saw white stars popping in front of my vision. The other time that happened to me (couldn’t breathe, white stars) was when I happened to be standing next to the fire alarm in my building years ago, when it was being tested. How could anyone not be sad about this? The surgeon took my reaction very personally, and said, unprofessionally, “Well, what do you want me to do about it? Perform a surgery and make it all better?” I cried harder. But yes, I did kind of want that 🙂 I didn’t know how the condition is monitored over time, how is pain managed, should I take supplements like glucosamine sulfate?

In July 2013, there were two days in a row that I couldn’t put weight on my right hip/leg. Enough was enough. I went and bought a cane. And, then, with the cane, I went through a grieving process with all my friends and family that it was unfair, I was so young, reminding others of their own mortality, etc. It was more for them than me. Their sad faces were hard to see. They didn’t know how to be around me. I got treated like a frail grandma. It’s just a cane, I’m not going to die of this. The cane has greatly, greatly lessened the pain over time in my right hip. I love my cane! I can go so much faster, too! Tripping is a hazard at first, and if you are using a cane you will do everything one-handed.

In January 2014 my left hip started hurting in the same way the right one did. I knew my left hip was the same as the right, even though the surgeon had said it wasn’t. I just KNEW. I made it to work and then was sent home because I was a wreck. My co-worker wanted to take me to the hospital. My other co-worker told me I had ‘shock spots’ around my eyes. I went home and cried on and off for the rest of the day.

After asking repeatedly for 5 months for my GP to refer me to another surgeon for a second opinion (she thought the first guy was fine, but I wanted to be sure) I finally saw him a few days ago. He confirmed the bilateral hip dysplasia. He did something the first surgeon failed to do: offer me hope.

With the right support, I can put the cane in the closet for a few more years AND get around relatively pain-free. I will need a hip replacement but not for around 8 years. He gave me some pain medication I am wary of, as my partner took them and said they are hard on the body, so I want more information first. I will have a referral to the Arthritis Society in my city and I can speak to them about medication and side effects. Other ways to live with pain and support joint health the best I can. Platelet Rich Plasma was also brought up, but it tends to be something for sports injuries. And possibly the acetabulum can be rotated so the femoral ball fits better. I am very glad I got a second opinion.

This is the hand I was dealt, so it is the one I have to play. I’m still in the grieving process. I do my best to be brave. I had free and easy mobility until two years ago. My physical activities have changed. I watch my friend Paula running along the giant driftwood logs that pile up on the beach with something more than envy: I used to be able to do that! We did that together! It’s been coming my whole life; biology is destiny in this case.

I don’t have a lot of people to talk to about this, pretty much all anyone wants to hear is that it is getting better. But I don’t know that it will get better before it gets worse. Thank you for reading this, and to this forum for allowing me to share my story.





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June

June

I have suffered back and hip pain for most of my life (over 50 years) and despite many trips to my GP (I live in...

I have suffered back and hip pain for most of my life (over 50 years) and despite many trips to my GP (I live in the UK) and many ‘blind alleys’ during attempts at an investigation I did not get a diagnosis until very recently.  I have had one total knee replacement which has become hyper-mobile and so now needs further surgery, and the second knee was due to be replaced last year but fear drove me to cancel the op as I seriously believe that should that also become hyper-mobile I will be unable to walk.

Where the hips are concerned, during my most recent visit to the Consultant I was informed that because I had had a knee replacement (albeit an unsuccessful one)  a bone osteotomy – a possible treatment for the hip dysplasia –  was now out of the question. The Consultant felt that he was unable to make a plan for treatment until he had spoken to his team in order to get an opinion from a number of Specialists in the field.

I wondered if there are any other people out there who have had a similar issue, and also what people’s experience of osteotomy is?

I have found the site incredibly helpful and useful and it really does help to hear other’s stories. Many thanks.





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Kaila’s Story

Kaila’s Story

My name is Kaila and I was diagnosed with congenital dislocation of the hip when I was just a baby. I had a pavlik harness...

My name is Kaila and I was diagnosed with congenital dislocation of the hip when I was just a baby. I had a pavlik harness put on when I was a baby but this was taken off after a few days as I was screaming in pain. At 18 months i spent 5 days in hangmans traction before having an open reduction, I had a full hip spika on followed by a half one but that didnt stop me crawling around and i had to keep getting the knees on the plaster repaired as i kept putting holes in it !!

This didnt fix me though so when i was 6 i had a femoral osteotomy it was hard to get around and i had to use a little walking frame and a wheelchair….after a year I went back and got the pins taken out.

Over the years i kept getting checks but the xrays showed that my hip was getting worse again so in 2010 aged 11 I had a pelvic osteotomy………….after this op they put me in a half spika from the knees down which was horrible and meant i could only get around in a wheelchair. My xrays were really good after this and Mum said that for the first time I had 2 matching hips!

But again this didnt last for long after about nine months the pain started to escalate and cause me extreme pain. I started to use my crutches again to go to school, and places where I would have had to walk around a lot.

At the beginning of this year I then went for an arthrogram. I had been to the hospital so often now that I nearly new the nurses off by heart. Everytime I was in the hospital for an operation or an Arthrogram I would have a wobble before we went in. But the wobbles were getting bigger, every time I was there someone different would promise me the same thing “Everything was going to be fine and I would be fixed at the end of it” I was starting to get tired of these false promises so like any other person would be I was scared. But I went in and went under general anesthetic and when I woke up I was being wheeled through the corridors to the recovery room. We were met by the Prof where he told us that I could go back to normal but nothing high impact. I was glad I could go roughly back to normal but unfortunately that wasn’t the end, even though I had been given a special jag to take away the pain, I was in agony.

This meant I had to attend hyrdo therapy sessions every week. But again there was no improvement, so unfortunately this left Professor Clarke with no choice. He told my mum and I that he had decided to operate again. He told us that he would perform a femoral osteotomy and a shelf. All we had to do was wait for a date.

I have never been the type of person that just gives up. So when the opportunity came to go to Herm with the school for Time Off Timetable week I took it. So I went to Herm with the school Hopped up the hill on crutches went to the beach and hopped around the whole island and then came back on the boat to find out when I was having the operation. It made me sad but I knew it was for the best, luckily the next two weeks were full of sunshine and fun before I went to Southampton for the op.

On the 6th of August my mum and I had to get up early so we could get the plane. The next day went quickly. We woke up the next morning at 6 so I would be ready for 8 so I could go down to the operating theater. Once we were in the waiting room we were asked some quick questions and then I was taken into the Operating Theater and I was put under local anesthetic. The doctor had decided that he would only do the one operation which was the femoral osteotomy. I can’t really remember much of the week as I slept a bit and the had meds and then I slept some more. I was in a half spica for six weeks and I am now recovering well but I am still not aloud to weight bearing for another six weeks. This should be the last hurdle for me. But we never know………..





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Kailyn’s Story

Kailyn’s Story

Kailyn was born 2 weeks late following a semi-uneventful pregnancy. I had some minor problems with pre-eclampsia, and as a result was placed on bed...

Kailyn was born 2 weeks late following a semi-uneventful pregnancy. I had some minor problems with pre-eclampsia, and as a result was placed on bed rest 4 weeks prior to delivery. Kailyn was also breech and seemed to be underweight, but this was explained away as an erroneously calculated date of conception. She did turn at about 38 weeks, but she was folded in half, with her feet up by her head. My OB/GYN believed this would work itself out during delivery.

Long story short, my water broke around 9:30 on a Sunday morning and following 12 hours of no progression, Kailyn was delivered by emergency c-section. Come to find out, her placenta had a small rupture for quite some time, explaining her low birth weight of 5 pounds 15 ounces. I thought the worst was behind us… boy was I wrong!

Our wonderful pediatrician was the first to become concerned about hip dysplasia because Kailyn had been folded in half, and I had problems with my hips during the pregnancy. These problems had been caused by an overproduction of the hormone that makes the hips relax for delivery. After an examination 8 hours following birth, the pediatrician confirmed that Kailyn had “loose hips” and fitted her for a Pavlik harness. That would be the first time we were introduced to bilateral hip dysplasia. She then made an appointment for us with an orthopedic surgeon.

We saw the orthopedic surgeon once a month for 5 months. He saw no progress in the development of the sockets, and Kailyn’s hips were both easily dislocatable. Following an arthrogram and a failed attempt at a closed reduction, he referred us to a pediatric orthopedic surgeon at the large children’s hospital in our area. Kailyn was 5 months old.

We arrived at our appointment with the ped. ortho. feeling defeated and scared. As first-time parents we had enough on our shoulders without hip dysplasia, but here we were! The doctor looked over Kailyn’s file and films and said the words we feared most… open reduction. Our first ortho. had mentioned this possibility, but it was in the context that it was rarely necessary. Surgery was scheduled for the following week, and we had no idea what to expect.

Kailyn was in surgery for almost 4 hours. When the ped. ortho. came out to speak with us, he seemed very pleased with how the surgery went. He took us back to the recovery room to see her, and we were shocked at how she looked. Our tiny little girl was completely covered from upper chest to her toes with this huge pink cast. I guess we hadn’t really known what to expect since we had not seen a child in a spica before. It was definitely not what we had expected!

We spent 2 nights in the hospital before Kailyn was released. She was hard to carry (there was no bar between her legs to hold onto), and we had no carseat that she would fit into. We drove the 2 ½ hours home with her strapped laying down in the back seat of our car. What an adventure!

Kailyn would spend the next 13 weeks in the spica. She had one cast change after the first 7 weeks, but other than that everything was smooth sailing. I was so surprised at how happy she was even though she couldn’t roll over or crawl like other babies were able to. We obtained a Spelcast carseat from a local home health agency, so we tried to take her out as much as possible just so she would have some outside stimulation. And I went back to work, so she got to spend time with other children at daycare. She was a very popular girl!

After Kailyn’s spica was removed at age 9 months, she was fitted for a rhino cruiser to be worn at night. We continued to see the ped. ortho. once a month for x-rays to check for progress in the growth of the hip sockets. Before the open reduction, Kailyn’s acetabular indexes were around 40. Following the removal of the spica, her indexes were 36 on the left and 34 on the right. However, that was the last progress we would see.

At Kailyn’s 18 month check-up (9 months following removal of spica), we were told that pelvic and possibly femoral osteotomies would be necessary on both hips. There had been no growth since her first surgery, and it was time to take the next step. Here we go again!

The ped. ortho. gave us a month to get our work schedules sorted out for the surgery. This would be a bigger ordeal than the open reduction, and I would have to be away from work for quite some time. We also needed time to prepare our then wild and free 18 month old for life in “confinement”. There would have to be another spica, and Kailyn would go from weighing 25 pounds to around 35 pounds. We had a lot to prepare for.

The initial plan given to us by the ortho. was to get inside and look at the hips to decide on whether the femoral osteotomy was necessary. Thirty minutes into the surgery, a nurse let us know that the doctor believed only the pelvic osteotomies were necessary. He would work on her left side first, close her up, and we would come back in 3 weeks to do the right side. They said it would be about 4 hours before the end of surgery.

To our surprise, about 3 hours later, the doctor came out to tell us that not only was he done with the left hip, but no hardware was necessary to hold the femur in place. The bone grafts were all the support they needed. He would go ahead and work on the right side that same day.

Another 3 hours passed and we were so excited when the nurse called us to come to the recovery room. Kailyn was very swollen and completely out of it, but both sides were done with no hardware. That meant no more surgeries for us, right? Wrong!

We spent nearly 5 days in the hospital this time. Kailyn had to have a blood transfusion, and it took quite awhile for her caudal to wear off. Once her hemoglobin levels were normal, we were sent home. I thought she would be a bubbly little girl just like after her open reduction. Well, she was having no part of that, and pretty well crabbed and cried non-stop for a week.

We went in to see the ortho. one week post-op. The x-rays told a horrible story… Kailyn’s left femur had dislocated from the socket and the bone graft was lying flat in the socket. Back to surgery we go.

Kailyn was scheduled for emergency surgery 2 days later. This time hardware was used to hold the left femur in place, but the right hip was holding up beautifully. It was good and bad news all in one, but we would still have to have another surgery to remove the hardware. We spent 4 days in the hospital this time, another blood transfusion, and we were sent home.

Kailyn was in the spica for 9 weeks before it was removed. She was now 22 months old. The ortho. opted to leave the hardware in the left hip “just in case”. She would have it removed 6 weeks later with no problems… not even a night in the hospital!

We are now 3 months past the hardware removal. At her recent check-up, Kailyn’s indexes were in the low 20’s on both sides, and the ortho. said those words we all long to hear, “See you in a year.” It’s been the longest 2 years of my life, but one thing is for certain, it was worth every minute of it to now see Kailyn run and jump and roll around just like a “normal” kid.

One year later she had her next check-up. We were sent to x-ray as usual, and with nervousness my husband and I waited for the news from the doctor. He and his assisting physician both entered the room with smiles from ear to ear. Kailyn’s hips were absolutely perfect in every way. Both femurs had wonderful coverage and were completely in socket. She will now be able to do anything she wants to – dance class, soccer, even skating. She’s a perfectly normal little 3-year-old. In fact, the doctor was so impressed with her progress that we will only need to see him every 2 years until Kailyn is about 13-years-old. I can finally breathe a little easier and let Kailyn have the freedom I wish she could have always had. Like the old cliché – we lived happily ever after!





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Kalynne’s Story

Kalynne’s Story

As first time parents, we were excited and looking forward to having our baby girl in a few months, so when my husbands niece was...

As first time parents, we were excited and looking forward to having our baby girl in a few months, so when my husbands niece was diagnosed with Hip Dysplasia at a couple months old, we were a little concerned it may be hereditary but didn’t think too much of it for our baby. We fully expected an adorable healthy newborn and lots of cuddle time (no one in my family had ever had any hip dysplasia issues, nor his until then that we knew of, and we’d never even heard of Hip Dysplasia in babies) … Very long story short our daughter was born 12 days overdue, big (9 lb, 14 oz), but seemed PERFECT! She was NOT breech, only risk factors for HD she had were, firstborn girl, and possibly it is hereditary since her cousin had it.

They checked her hips at the hospital and said they seemed fine! We were SO relieved and so we went home, 6 days later my mom took Kalynne and I to her first check up. Our pediatrician checked her over, commenting on how healthy and beautiful she was, then moved to her hips, I noticed he was spending a lot of time there and had a frown. I immediately knew something was wrong and he then showed me that her left hip was dislocating… I remember like it was yesterday feeling so overwhelmed but trying my best not to just cry, keeping a brave front up since I was with my mom… But postpartum hormones, plus that was NO fun, I kept telling myself “it is NOT serious, he said it dislocates but it’s not dislocated”… I knew nothing about it so I basically lied to myself to keep my hopes up… I did NOT want my baby to have to have surgery…

We were referred to a pediatric orthopedic surgeon (one who had thankfully just in the last month moved to our city). Back at home, and after my mom left I remember I laid her in her swing and dissolved into tears… I cried for several days straight (and cried more over the next several months). I felt like I was being SO cheated, and everytime I looked at my baby or held her I just hurt for her and felt so sad for the fact that we prob just had a couple days to cuddle her and enjoy her newborn phase without a brace or cast… Only Hip Dysplasia Parents can understand this but I felt a feeling of “loss”… it didn’t seem fair and frankly I got depressed very quickly (and I had NO normal postpartum depression, I actually was SO happy til that 6th day).

Two days later my husband was working, so my mom took us to our appointment where the Ortho took just a couple minutes to diagnose her with Bilateral (both hips – though I didn’t know that at the time) Hip Dysplasia. He placed her in the Pavlik Harness and set us up for visits every two weeks, and Ultrasound in 4 weeks! At the Ultrasound we found out it was both hips, and more serious than we thought. I was feeling VERY scared because I knew the Ortho didn’t want to try the harness for more than a couple months before they would move to surgery. So we continued our 2 week checkups, and 4 weeks later went for our second Ultrasound.  Her hip had improved, in fact the right hip was considered “good” but the left was still not there… I had hope but it had been 8 weeks.

After the first couple weeks our baby girl figured out she didn’t like being in the harness 24/7, she would scream hours every night due to colic which was made worse due to the fact she couldn’t kick her legs… And she was the crabbiest baby ever! I cried with her most of the time! We were getting SO weary of this deal… I wanted to enjoy her first few months but instead I just wished for her to be older so we could be done with the hip stuff.  We had another Ultrasound where they FINALLY told us her hips looked great despite the odds. That is when it hit me that we were SO blessed, our Ortho looked at the Ultrasound, shook his head and smiled and said “you better be thankful for this miracle, I have NEVER seen hips as bad as hers get better with just a Pavlik Harness, much less in a couple months”… she should of had to have countless surgeries!

My prayers were being answered, she was being weaned out of the harness and she could come out of it for 12 hours per day! That was the happiest day I had had since she was 6 days old. She had been in the harness about 10 weeks, although that doesn’t sound long, when you are in the situation every day is a hardship… it feels like a year. At one point I didn’t think I could do it any more, but FINALLY I saw the light at the end of the tunnel! For the next month she slept (with plenty of fits, of course) in the brace until we finally let her out completely!

They told me she would probably be delayed several months in motor skills and may not walk til 2 yrs old. But she started rolling over at about 3 months old (something pavlik harness kids can’t do is tummy time so we started that at about 2 months old when she was out of her harness during the day), sat up well at 5 months, crawled at 7 months, and pulled up at 9 months, started cruising all over around 10 months, taking steps at 10.5 months and walked at 11.5 months! She was into everything by 12.5 months and now at almost 17 months old she is a normal and healthy little toddler! Running climbing and playing like any other toddler…

There is hope for your HD baby if you are going through this situation… and I am so thankful for this website because I researched and couldnt find much on HD.  It’s not very common, I guess, around here? It was very informative and supportive and helpful for me to see success stories and also know our case could be much worse! We are now expecting a baby boy, and though I know statistically we have a low chance of him having it… it almost makes me panic when I think about having to go through that again.  It was a dark time in her little life, I honestly try to not think about it and when I do I feel like crying and feel sick. I REALLY want to be able to dress my baby normally, hold him normally and cuddle and ENJOY him being tiny instead of wishing it would pass! No one but we HD mommy’s can understand, I know, but at least we do and I know if our little boy has HD also then I can come to this site for support! Thanks for reading and I hope it offers encouragement! =) The first pic is when she was first put in pavlik, the second is at 2 months old, and the third is right after we removed the harness! =)





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Kara’s Story

Kara’s Story

My name is Kara. I am 19 years old and was diagnosed with Hip Dysplasia when I was 17. I have always been a very...

My name is Kara. I am 19 years old and was diagnosed with Hip Dysplasia when I was 17. I have always been a very active person. I played softball and basketball on school teams, and have danced since I was 4. During my high school years I was on the swim team and ran track.

During the Fall of my senior year of high school, I was sitting in AP Calculus class and leaned forward to pop my hips. Dancers pop their hips regularly because it enables them to have a wider range of flexibility. I always popped my hips and was fine, except this time I was completely stuck. If I leaned up to straighten back up, then I would be in excruciating pain. Well, I was the next person up to solve a problem on the whiteboard and when my teacher noticed I was stuck, she immediately went and got our first responder which happened to be my Allied Health Sciences II teacher. I had been in her class earlier that day and was completely normal, and now everything had changed. The longer I stayed there the looser my hip became and about an hour later (30 minutes after the bell had rang to dismiss school for the day) I was able to stand. If I put weight on that leg (my left one) it would completely crumble right out from under me, so they wheeled me in a computer chair to my car. I was able to drive because it was my left hip affected, not my right.

I was very determined to go to swim team practice that afternoon so I made myself walk laps around my house, and eventually I was able to walk with a small limp. My pain had almost completely subsided after swim practice and I was able to go about my normal routine. I was so confused about what just happened and why I was able to walk normally when hours earlier I was completely stuck. The pain was absent for the next month or so, and then came back. I went to my family doctor that I had been going to since I was a year old, and he referred me to my orthopedist who I had gone to for shoulder problems the year before. He diagnosed me with snapping hip syndrome and sent me to physical therapy. I was familiar with the PT process because I had gone for probably 8 months or so for my shoulder.

After a few months of therapy and no progress, he referred me to a surgeon about 30 minutes from my house who works at a local university hospital. I went to see him during the summer and had countless x-rays and an MRI-arthrogram which showed I had hip dysplasia and torn cartilage. He is known for hip arthroscopies, so he referred me to another surgeon who specializes in hip dysplasia.

I had my appointment with the doctor and he told me my options. I could have a PAO and hope the labral tear healed on its own, or I could have the hip arthroscopy to repair the labrum. The problem with the latter option is that with my joint so instable the labrum could easily tear again within a few months of the surgery. After praying about it and talking with my parents and sister who is a nurse, we decided it would be best to go ahead and have the PAO and hope the labrum would heal on its own. I was not sure what to do knowing that I was supposed to go to college in a couple months and knew that I could not have a major surgery and walk around a big campus. I also knew I could not wait until after college to have it because the longer I waited, the worse it would get. I decided to enroll at a local community college and take all online classes so I could do my work on my own time and rest when needed. We scheduled the surgery during the coming winter. Every day the wait got harder and harder being that it was mid-summer and my surgery wasn’t until well into the winter season.

When my surgery date came, we woke up at 5:00AM because we had to be at the hospital at 7:30 and surgery was supposed to start at 8:30. Things went as planned and after prayer with a friend who is a youth minister and my pastor, I was off to the operating room. I was in the OR for 8 hours and after I had recovered enough, I was taken up to my room. I was only supposed to be in the hospital for 3 days, but wound up staying for 9 days because of a post-operative ileus, which is basically when your bowels do not wake up from the anesthesia. My bowels were so backed up, I took one bite of spaghetti and threw it right back up because there was nowhere for it to go. It was disgusting! My surgeon restricted me from food and drink for 48 hours, and the only way I was able to stay hydrated was from IV fluids. Finally after 9 days I was allowed to go home! Recovery was not fun at all, and was pretty painful. One of the hardest things was not being allowed to bend more than 90 degrees. I couldn’t even put my own shoes on! PT was hard as well, but my therapist had a great sense of humor and I was able to get through each appointment more and more easily as time went by. Eventually, things were going smoothly and with much humor and prayer, my family and I survived the PAO process.

The following summer I was experiencing some more pain and my PT wasn’t quite sure what was happening. I had a cortisone shot because the first assumption was that I just had some extra inflammation that needed to calm down. After waiting for a bit to see if that worked, we realized that it was not going to do the trick. I noticed that I could feel the head of my screws just by touching my incision and I was grossed out. I went to see my orthopedic surgeon and he suggested that since my bone had healed he should go ahead and remove the screws, and that would hopefully help the pain. I went ahead and had surgery number two to remove the screws. Recovery from that was very easy and I was back on my feet in 2-3 weeks. Unfortunately, my pain did not go away completely. Later that summer I had more x-rays and an MRI and it showed nothing, but I knew there was something going on because my pain was terrible. I had an appointment with my orthopedic surgeon and general orthopedist together and they both agreed that I should proceed with a hip arthroscopy to explore what was going on and fix whatever was found. That Fall I had surgery 3. There were several things that my doctor found including a labral tear (even though it did not show up on the MRI), a bone cyst, a hole in my bone, synovitis, a bone spur that was poking through muscle, and impingement. Recovery for this surgery, despite the many things they found, was not near as bad as the PAO recovery. I was only on crutches for about five weeks after this surgery compared to well over two months after the PAO. There was obviously much pain involved, but still was not as bad as the PAO being that this surgery mostly dealt with tissue and things instead of the total reconstruction of my hip socket. I was able to go off to college that coming January because everything was looking good.

By late spring things were going very smoothly. My PT exercises were upgraded to jumping, running and other high-impact activities that I was restricted from for over two years. Unfortunately, by the time April came around a lot of my pain came back. My orthopedist thought it was tendonitis and bursitis, so he ordered intra-bursal cortisone shots, which are extremely painful shots that go straight into the joint capsule and bursa instead of just the muscle. After waiting a while again, it was obvious that they were not going to work and something else needed to be done. I had another MRI and a CT scan in later that summer because my orthopedist was not sure if the problem was dealing with bone or tissue. He ordered them stat because he knew I was leaving to go back to school for the Fall semester in two weeks. The CT scan showed a bone cyst and the MRI showed a spot that he thinks is either early osteoarthritis or where cartilage has rubbed down to bone.

He said if my pain was significant enough, then he could do another surgery to go in and take a look kind of like he did the past Fall. I decided that another surgery, though not an appealing option, would be best given the amount of pain I am in daily.

My journey with hip dysplasia is not over like I had hoped it would be by now, but the Lord continuously provides for me and is revealing Himself to me in ways that I never thought possible. During this process, He has constantly reminded me that He is sovereign and I am not. He knows what He is doing and this will work out for my good and His glory. For example, before all of this I had decided I wanted to be a physical therapist, and I do believe He is giving me every opportunity to experience how my patients are going to feel, so that I can have an extra amount of compassion for them. To all of you reading this who have hip dysplasia, please do not be discouraged! With Christ, we always have the victory!





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Karen

Karen

Hi, I’m a 39 year old female who has just been diagnosed with Dysplasia after a long history of over 30 years of problems. I...

Hi, I’m a 39 year old female who has just been diagnosed with Dysplasia after a long history of over 30 years of problems. I am very grateful that I have private healthcare, which in the UK, is amazing and I’m under a top surgeon in London.

However, due to the recover time (for both hips) and the horrendous looking treatment, I have asked for some other opinions as to why I can’t have bi-lateral replacements instead (as I don’t currently have arthritic hips), especially now the ceramic/titanium THRs have very little wear. So that’s where I’m looking for your help and stories of anyone that was able to opt for replacements instead of PAOs who didn’t have arthritis.

It all started when I was 9 when I started having pain in my knees. I was told it was growing pains. At 15, I was told it was attention seeking (as I used to run middle distance and either won, or suddenly slowed and colapsed). At 22 I had an X-Ray of my knees and that was clear (mmmm…). At 26, again, they found nothing. At 31 I was told “you probably have osteo-arthrytis” without even doing a bloody test. So for 9 further years, I suffered (wanting to be such an active person in my head!) until I was walking up stairs on all 4s. (I don’t think I need to go into other details about restrictions and pain as you’ve all suffered it!)

With no pre-existing conditions, I decided to get private healthcare and when I asked medical friends for the right surgeon to be referred to… they diagnosed me on the spot with Chrondomalacia Patellae (knees). I had no VMO muscle at all. My IT bands were extended and my cartilage cleaned up (I was left with 10% in my left and 25% in my right).

I began to be incredibly active after my knee surgery, even becoming a cycling addict and took part in a 300 mile ride in 4 days, just 6 months after surgery. However, the hip pain I was experiencing as well never went away… even after 8 months of Physio and over the next 3 years, got worse and worse to the point that after any form of exercise (and randomly without warning) it would bite me. It was also incredibly difficult to stand up after a seated position without aggressive pain.

So I’ve now been diagnosed (which was a shock considering I was expecting a bit of Physio!) and I have a left labral tear to boot. I’m now occasionally on crutches and I’ve penciled my first hip in for June 16, subject to not being told replacements will work!

Looking forward to some comments!
Karen
PS – Wonderful site and congrats on your recent donation!





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Karen Kerr

Karen Kerr

I’m Karen from Glasgow Scotland. I’m a mum to 7-year-old Lauren and married to a wonderful man named Grant. I wrote a book last year...

I’m Karen from Glasgow Scotland. I’m a mum to 7-year-old Lauren and married to a wonderful man named Grant. I wrote a book last year to help kids with DDH facing surger. My family had our own DDH journey and I felt I had to use all our negative experiences and turn them into positives to help other families.

Here is my story.

I have a bicornuate uterus which meant Lauren had reduced space for the whole of the pregnancy. She was also transverse breech and had to be born through a c section. They thought as a precaution due to the reduced space and the position she was in they should scan her hips. My daughter was diagnosed with bilateral hip dysplasia when she was two, however was scanned at six weeks and was missed. She has undergone open and closed reductions, femoral and pelvic osteotomies and multiple cast changes. She had 5 operations in total and 18 months in her Spica Cast.

Parallel to this I was going through brain operations for a brain condition I was born with so it was a very trying time. A low moment was when my husband and I were working 40 plus hours a week and getting no sleep and when home Lauren would be grumpy and want all of our attention. It felt like there was no light at the end of the tunnel and it would never get better. We had no one around us that understood what DDH was and understood what we were going through. There is a feeling of isolation and loneliness. I’m not sure if people know they’re doing it but they seem to distance themselves when you need them the most.

I feel that by sharing my experience and showing a type of “if we can do it anyone can approach” it can give families some hope that they will get there and there is light at the end of the tunnel!!

Lauren still gets seen by her surgeon on a yearly basis and her surgeon is really pleased with her hips and they are almost perfect which is fantastic. She does what every little girl her age would do, dancing, gymnastics, and playing with friends.

 “Spica Superheroes is available on Amazon for purchase and for download to a kindle.

Karen thanks Steps DDH charity for assisting with the publicity of the book and DDH UK for promoting the book as a resource for parents. Yorkhill hospital in Glasgow also hand it out to every child that it’s diagnosed at the plaster room.





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Katelyn

Katelyn

Hello everyone, my name is Katelyn. I am 17 years old and am currently a patient at  Children’s Hospital. As you may have guessed from...

Hello everyone, my name is Katelyn. I am 17 years old and am currently a patient at  Children’s Hospital. As you may have guessed from the website, I have been diagnosed with developmental hip dysplasia. It all started at the beginning of my 8th grade year. In this school year I was taking choir as one of my electives. In choir we were required to stand for the entire class period, to improve posture and breathing. As I stood, singing like everyone else, I felt my hips locking up. They became stiff after about 15 minutes of standing and became almost unbearable towards the end of the class period. This continued on and slowly started getting worse until the end of the school year. But it wasn’t until my freshman year of high school that I was diagnosed with hip dysplasia.
At the beginning of my freshman year I was also faced with a stomach condition called gastroparesis. Because of this my gallbladder was removed and I experienced several other medical procedures. These included things like exploratory scopes, CT scans, and two gastric emptying studies. With all of these issues going on I was also faced with the underlying issue that was my hips. As the first semester continued so did the pain. At one point I remember my hips and bones were almost grinding against each other. My mom was perplexed by the noise and questioned it, “Katelyn why is your stomach growling so loud?” She asked. I replied with the fact that it wasn’t my stomach at all, but rather my hips. It was then that we decided that this was a more serious issue than we thought. After going to two doctors and an orthopedic specialist I was finally diagnosed with hip dysplasia. Unfortunately, the orthopedic specialist did not feel that it was safe for them to operate. So, I was referred to the hip specialists at the Children’s Hospital. It was there that I met my orthopedist along with her assistants and medical team. After just one x-ray they officially diagnosed me with the condition. My left hip was moderate to severe, and my right was mild. I started physical therapy that spring and continued until my approaching surgery. On August 6th 2018, my left hip was operated on with the PAO surgery. After a 7 hour procedure I awoke to what seemed like a whole new world.
I remember when I woke up the first thing I asked was whether or not they have to make the other incision. The one that would’ve been in my thigh if need be. But luckily, they only made the one incision at the top of my hip. The next week was a blur. Nurses were in and out of my room. So were the specialists. I couldn’t eat. My hips were placed in odd positions I had never been in before. Everything seemed like a horrific mess. And before I knew it, it was time to go home. I honestly don’t remember much from that time. I think the amount of pain killers I was given made my memory fuzzy. After about a month and a half it was time to start physical therapy again. The first time I went into PT after surgery my physical therapist asked me to lift my leg up as much as I could. No matter how hard I tried I could not lift up my leg. When I got home I felt discouraged. “How is this possible?” “Will it always be like this?” I asked myself these questions ashamed of my inability to move. But this was completely normal. This was all part of the recovery process. Learning how to move and getting stronger every day. One thing I hated doing but really helped was walking. Just a little bit every day. My dad after having three back surgeries understood my struggle. He made me get up every morning and go out on the porch. We sat and had our coffee, rested for a bit, and then it was time to walk. Step by step I walked across the porch with my walker. Putting only 20% of my weight on the left side. My dad walked with me. We did this up and down a few times ranging anywhere from 2-5 times. And although I was angry at my dad for making me do this, it was one of the most helpful things in my recovery process. As time went on, I actually got excited to get on the porch. It felt good to move and to walk more and more like normal every day.
I continued physical therapy and eventually went back to school. I started at only two classes a day, and finally returned full time on the second semester of my sophomore year. Now, a year later starting my second semester of my junior year, I have come to realize I will need surgery again. We are currently in the process of getting MRI’s and scopes to find out whether I have labral tears in one or both hips. And are also preparing to do the same surgery as my left hip, the PAO, onto the right. Over the past two years from compensating and supporting my left hip, my right hip has gotten increasingly worse.
Overall, my experience with hip dysplasia has been more of a blessing than anything. I have learned so much these past few years and I am very thankful for so many things. I am thankful for my hip specialists’ and all the nurses who have taken care of me. For the learning experience about medicine and the medical field that this has brought me. And the humbling feeling of being the one in pain or who needs help. Before I had these medical issues I felt as if I was untouchable, now that I’ve gone through surgeries, medical procedures, a 9 month recovery and am now repeating that process I see the world a lot differently. My number one thing I’ve learned throughout this experience is how not to take things for granted. One day I was able to walk, the next I was limping. And after surgery I had to use a walker and crutches and wheelchair for about a month or two. It really puts you in your place and helps you be thankful for all that you do have.
I guess I will finish off with saying that for anyone who is going through hip dysplasia or any condition for that matter, I am praying for you. Please don’t worry, I know that things are scary right now, but it will get so much better. One day you will be able to walk and feel normal again. Your doctors and therapists will congratulate you and will cheer you on for the progress you have made. And I will also be cheering for you, like those who have cheered for me through this time.





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Katherine

Katherine

Hello- I am writing this story with the hope of receiving some insight and advice from those who have been in a similar position. I...

Hello-

I am writing this story with the hope of receiving some insight and advice from those who have been in a similar position.

I am a 38yo female who has always been very active. 10 years ago I tore my labrum in my left hip and a scope fixed it without any problems.

Last fall, I started having pain in my right hip that I assumed was sports related and another tear. After learning I have moderate hip dysplasia and a torn labrum, the doctor has told me I have two options – the first is doing a scope to fix the tear. He said this is 75% likely to fix the pain but he only thinks it will last 1-2 years at which time I may be faced with PAO or THR. The other is the full PAO which is 5-7 months of recovery. The PAO is terrifying to me and I am leaning towards the scope, although I do not have much information as to what the prognosis will be post surgery after a year or two.

Has anyone made this decision and if you have, what were the results?

Thank you!
Katharine





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Katie

Katie

I’d like to share my story and share awareness. For the past 12 years I’ve been too uncomfortable with my scars and lost my confidence...

I’d like to share my story and share awareness. For the past 12 years I’ve been too uncomfortable with my scars and lost my confidence when I was aged 12. Over the last 12 years, I’ve had 4 operations and I’m only 16, and that’s all because of a doctor that didn’t go their job properly. As parents know, doctors are suppose to check your child’s hips and keep on checking them further through their life as a child. When my parents kept taking me and saying there was something wrong, my parents got told they were paranoid and I was just lazy and didn’t want to walk. My parents never gave up and kept taking me to the doctor demanding that there’s something wrong. Eventually when I turned age 4, my parents took me to a doctor that wasn’t my original doctor and he knew there was something wrong with me straight away and sent me to a hospital in Stoke-on-Trent. Doctors spent 8 hours operating on me, they broke my leg to remove some bone and put a metal plate and rods into my leg and I was in a full body cast for months. I couldn’t move unless people picked me up and moved me around, at age 4 I couldn’t even run around like all other kids could. Eventually, when I was taken out of a full body cast, I had another operation to remove the rods in my leg but the metal plate stayed in and they put me in a half cast and I had to learn to walk and run all over again. I eventually did it, it was hard believe me but I did it. I can’t go on really long walks as my leg aches and gives in. I don’t walk like many people do, my leg and foot are twisted and my hip isn’t a normal shape like the other one. Then in October 2018, aged 15, I had an injection operation at a hospital in Wolverhampton, where they injected something into the bone of my hip to see if the pain would go away as I was getting chronic pain. Unfortunately that didn’t help much. Then in March 2019, still aged 15, I had an operation to cut open my leg again to remove the metal plate that was in there for 11 and a half years. I spent a night in hospital and was on crutches for a week and luckily managed to start walking and running quickly again after about 2/3 weeks but it was hardest when I just come out of hospital as it took me ages to put clothes on, put socks and shoes on, take showers and go down or up the stairs. I went through hell. Yes I’m different, my hip is different to others and I walk different to others, but that doesn’t make me any less human. I’ve been bullied and had many nasty comments about myself but also had supportive and caring ones. People have got to realise scars are beautiful and they’re not unusual. Yes, I do admit, I do have my bad days, but then I remember… I have hip dysplasia and I’m a warrior for what I’ve been through and so is everybody else who has hip dysplasia. I would’ve only had to go through one small operation when a baby and then that would’ve been it but because I had a lazy doctor I’ve had to go through all this and will have to go through further operations and even a hip replacement. All I want to say is, to all parents, please please please make sure you and your doctor checks your child’s hips, I cannot stress it enough! You and your doctor could save your child having to go through what me and my family have had to go through. The pain, the suffering, the upset etc. I’m sharing my story out of confidence and sharing awareness because after 12, nearly 13 years, I’ve realised my importance, I’m only human and I’m strong for what I’ve been through! That takes a lot of guts for me to say. To everyone who has this condition I’m proud of you for who you are and what you’ve been through and remember, never forget your importance and your beautiful! Our scars are beautiful! Don’t be afraid to show them off! Thank you for taking your time to read this, it means the world to me. #hipdysplasia #congenitalhipdislocation #hipdysplasiaawareness 💓💙





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Kaydence’s Story

Kaydence’s Story

Kaydence was born January 25th 2012. She was just beautiful. I had her by a schedule c-section and everything went great! Kaydence was a normal...

Kaydence was born January 25th 2012. She was just beautiful. I had her by a schedule c-section and everything went great! Kaydence was a normal baby rolling, crawling, and walking around holding onto furniture just like any “normal” baby would. After her first birthday she started walking behind a push toy. That’s when daddy and I realized that something may be wrong with her foot.

When she would walk her right foot would drag a little behind causing her to fall. We made an appointment with her pediatrician who then sent us to the children’s orthopedic center. On May 6th 2013 we saw Dr.Riley at Akron Children’s Hospital who took x-rays of Kaydence’s legs after watching her walk. To our surprise he came back with the x rays to show us that BOTH of her hips were out of place. That was like a knife going through my heart. Tears started coming out before he could even get the words out. As he was talking all I could think in my head was “why my baby” … “how could this happen”… by the time I was done having a melt down he said that word “surgery” my heart sank!My 16 month old baby was going to go through surgery! (she just had ear tubes placed the month before!)

He scheduled us for May 17th. The plan was to go in and snip the tendons and have the hip fall back into place. Well of course it sounded so simple but that wasn’t the case. He got the left hip to go into place but had a hard time with the right. He put her in a Spica cast and scheduled a second surgery for her right hip on June 12th 2013.

He had to figure out a new plan for the right hip. After surgery on May 17th Kaydence was in total shock when she woke up and couldn’t move like she used to. This was the roughest night of my life. She was scared and honestly so was I. We ended up staying over night in the hospital that night due to us missing the therapy people for her car seat rental. This was the start to a long journey ahead.

Her second surgery was very successful! That was a relief. Now both hips are in place and healing. She will be the Spica cast for a total of at least 12 weeks the doctor said. She had a cast change on July 19th. This was so exciting to us because she was only going to have a half cast on her left leg. Finally I was able to rub and kiss my sweet girls little leg.

We are so close to her cast coming off on Aug 19th (4days)! Once her cast is off I’m understanding that she will be in Rhino Brace. This has been a long summer in a Spica cast but I must say Kaydence didn’t let it hold her down. She pulled herself around on the floor with her arms (army crawling). And she even tries to stand up holding onto the couch! She has taught me that a love for your child is unbreakable, its unexplainable. I spent many nights sitting on the floor watching her sleep in just pure amazement on how strong she is and how nothing can slow her down.

As a mom I was terrified. I’m assuming I will be worried day in and day out about her hips and having to go through any more surgeries with her in the future. If you are reading this because you just found out your child is having similar issues just know that there is an end to the cast. Eventually there will be an end to the brace and your child will amaze you with the amount of strength and patience they truly have.

Its not a easy road and its definitely not ideal. But really the diaper changes become a normal thing, to tuck a size 1 diaper inside the cast and place her normal size diaper on the outside. Making home made chairs and items she can fit in becomes a normal thing. Your life will shift and things will change, but what I learned is that your child does not change. Kaydence was very happy before the first surgery and still today she is just nothing but happy. You will have many nights as a mom/dad crying and praying for everything to be over but that’s just a normal thing for any parent! My number one advice is to let people help you. If you have parents that are willing to help you like I do. My parents have been extra amazing during all of this. Let them help. Aunts/uncles/nieces/nephews allow them to help you a little bit. I wish you nothing but Good Luck! 🙂





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KC

KC

Hi, I’m KC and I’m 35. My mom told me that my hips were dislocated when I was born. I was treated for hip dysplasia...

Hi, I’m KC and I’m 35. My mom told me that my hips were dislocated when I was born. I was treated for hip dysplasia when I was 3 months. The treatment seemed to work, however, I always felt that my hips would slip in and out of socket.

I didn’t have much time to worry too much about my hips, because I was diagnosed with Scoliosis at 11 and had surgery for it when I was 12. I also had really loose knee caps and had to wear knee braces, in addition to having flat feet and having to wear custom orthotics in my shoes. Despite all of that, I played basketball in middle and high school. I also went to the police academy and was a cop for 5 years.

It wasn’t until I was 25 or 26 that I started having pain in my left hip. The sports specialist said that I had bursitis and prescribed ibuprofen and exercises. It wasn’t too long before I was able to go back to the gym to run and lift weights.

I had some pain in my hips when I was pregnant in 08 and 2010, but I assumed it was normal. It wasn’t until November & December 2013 that I couldn’t ignore the pain in my left hip anymore. I went to see a Rheumatologist for fibromyalgia that I was diagnosed with in 2012 and I told him about the hip pain. After seeing the X-ray he immediately referred me to an ortho surgeon. Before seeing the OS, my right hip started to hurt too. I ended up having to borrow one of my mom’s canes.

The OS confirmed bilateral hip displasia with mild bilateral osteoarthritis. If this is mild arthritis, I’m afraid to find out what major arthritis feels like! The OS told me to work on losing weight Without Exercising, but with cutting carbs. Keep in mind, I didn’t start gaining weight until I couldn’t exercise because of the pain. He Did Not prescribe meds, cortisone shots, or physical therapy. He just told me to take some supplements and lose weight! In the mean time, my pain is getting worse and I’ve had to buy my own cane to walk with daily. I went to my GP for a physical and told her about the pain. She did order PT and told me to increase my fibromyalgia meds. Increasing the meds did help a bit. I’m going to my second appointment with the PT today.

Having so many health issues at such a young age, even though I’ve always been active, really had me thinking that this can not be a coicidence. Through research, I think I may have hypermobility syndrome. All of my diagnosed issues fit perfectly. Has anyone been diagnosed with hip dysplasia and hypermobility syndrome? I’m planning on going to a new OS next month and I will definitely bring up my theory of having hypermobility. I’ll keep you guys in the loop as to what happens.

Like many of you, I am definitely going through a grieving process. Cardio was my stress reliever, now I don’t know what to do. The looks that people give me when they see me walking with a cane is so depressing. I want to be able to run and play with my four year old. Instead, he’s always running to my side when I cring in pain.

I am glad that I found this site and know that I’m definitely not alone in this struggle. I welcome any comments or suggestions. Thanks for listening to my rambling! 🙂





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Kelli

Kelli

Hi there fellow Hippies! It has been a blessing to find this site and community dedicated to the education, support and fellowship for those of...

Hi there fellow Hippies! It has been a blessing to find this site and community dedicated to the education, support and fellowship for those of us, young and adults, affected by hip dysplasia. Whether as the warriors or the loved ones, we are all impacted by this diagnosis in very heavy ways.

For my (very lengthy) story, it begins as the second born female child of very young, economically challenged parents during the Vietnam War era near Dayton, Ohio. The family was a happy lot who enjoyed family, nature, animals and spending time together, watching the baby “Beaner” develop into a toddler (Beaner would be me 🙂 ). My nickname was Beaner as I was over a 9 lb baby to a very tall, thin (bean pole) mother. I was round and plump, full of spit and vinegar, and as my mother would go on to say, had I been born first, there would not have been a second child 😉
Needless to say, the Toddler Years started off with a bang! Always wanting to be on the go, chasing after my best friend/big sister. Unfortunately, at the 12 month walking milestone, my grandma told my mom and dad that my walk was not right. She was a mother to 8 and grandmother to too many to count so mom and dad trusted her assessment and took me to see the doctor. Alas, I was diagnosed with bilateral hip dysplasia and underwent closed reduction, internal fixation and placed in a Spica Cast for something like 12 months…. I can’t recall all the details 😉 I am told, however, that I was a trouble maker! Every appointment would bring about a scolding to my parents as there would be crumbs of cookies or sandwiches or other crazy items, such as toys, which I would hide down my cast for safe keeping for a late night snack or to play with after bedtime.

My parents did whatever they could to suffice me some freedom and continue to keep me active. Back then there weren’t car seats or adaptable strollers for children in Spica casts nor could my parents have afforded such luxuries. So my ingenious father improvised, overcame and adapted! He modified an army backpack to fit me and my cast so I could accompany them on hikes and walks in the parks. He adapted a Big Wheel, or something to that effect, so that I could lie on my stomach and scoot around with my arms to chase after my sister and the neighborhood kids, and get some exercise too! Finally, after a year, the cast came off and from what I understand, I was back to terrorizing the town in no time! Hips were fine and I was released to carry on without restrictions or concerns. Yet, in the back of my consciousness, something never quit felt right in my legs.

I believe it was the 4th grade when the school was running scoliosis checks. I was always the tallest or second to tallest in the classes so I was nearly last to complete the assessment. The testers have you stand in front of them, bend over to touch your toes, and the assess your spinal curvature and your pelvic bone levels. I don’t recall exactly how I was ‘notified’, however, I was told that I had scoliosis and needed to see a specialist right away… I can remember crying and standing outside of sisters’ classroom door waiting for the teacher to pull her from class so that she could console me and call mom and dad. Back into bondage (bracing) I went.
At this point, we were going into another new school in my 5th grade year. This would make the 4th new school for me. It was a private school with uniforms and ‘wealthier’ people that we did not know. I would be going in with braces on my teeth and a brace on my back/pelvis ~ Nothing to See Here People 😉
I made the best of my middle school years. I made the cheerleading squad, played (attempted to play) softball, basketball, and volleyball. Running wasn’t ever my ‘thing’ and I wasn’t the most coordinated but I really had a good time and lots of friends!

Fast forward through high school, that was a disaster of my own making…. to the College Years. Early 20s, feeling amazing, studying exercise physiotherapy and nutrition, and meeting my first love – as he performed a jujitsu move that landed me flat on the mat staring up at his handsome face 🙂 Jujitsu would end up being the Dragon that woke my DDH. Following an advanced class of sparring, throwing in some round-house kicks, i was unable to ascend the steps to make it our parking garage to go home. My now husband basically carried me to the car in fear, with me in tears.
My amazing local Orthopedist, called a family meeting. He was a friend of the family and my aunt was faculty there so we were in within a day or two. As he read the X-rays, drawing the areas of where my acetabulum should be, the loss of femoral head shape, and outlining the areas of early osteoarthritis in a 23 year old’s hips, I could see the gravity of the news on my parent’s faces. I could feel the anxiety and guilt in the air like thick smoke. The intensity of the news that the doctor wanted to refer me to Ann Arbor, Michigan for a “new” technique called a Ganz periacetabular osteotomy, with one of the only U.S. surgeons (at the time) fell on ears ringing with head-chatter. My life had just been altered in completely different path…. His words that the alternative would be a hip replacement at some point, but I was too young, and they wouldn’t last my lifetime… and exercise physiology would not be the best career pursuit, was too much. The surgery was intensive, the recovery more so and he wasn’t certain I was a candidate yet I needed to go to Ann Arbor, MI. (My husband was excited as he was a University of Michigan football fan… in a SEA of The Ohio State BUCKEYES loyal fans 🙂 )

Circa 1994 in gorgeous Ann Arbor, MI. Best deli sandwiches in that town EVER! The doctor walked in and said, yep, she’s in pain! (umm yeah…) and that I was a perfect candidate for a hip sparing rPAO. He explained the surgery (6-8 hours long!), the need to self donate 8 units of blood (O-Neg) and a week in a Detroit hospital followed by 6 weeks non-weight bearing then progression to full weight bearing….. WOW! I was able to make 7 units of self directed O neg blood donation… surviving on a multitude of recipes for disgusting liver to keep my iron load up…. Lucky for me, my daddy is O Neg and was able to direct the last pint in my name. I needed it all!

The worst part was third shift in a downtown Detroit hospital (which is no longer in existence) all alone in your 20’s and unable to do anything for yourself. I called crying for someone to be there to be my advocate… I couldn’t take another night lying in urine or without water or medications… or anyone to talk to, so my daddy came back up to stay with me! He even got them to let me out in a wheelchair for some fresh air in the daytime…. it was so special to spend that time with him!
Recovery was no joke! I shared a bedroom with my 5 year old niece at my sisters as they were in a flat apartment, and my then-husband was in Firefighter training. I don’t know how she slept with the CPM machine droning away all night long and I am sure I was insufferable as a patient, being dependent on everyone for everything. My big sister was amazing as always! Single mom taking care of her young daughter and little sister while working a full time job in the financial industry! That’s a warrior for ya’!

I went back to college. Only this time, I was going to be an RN. Based on the care I received after my PAO, I knew I wanted to be there for people who were scared and alone like I was at that time. No one should ever be in a position of fear, pain and isolation without an advocate, so I was determined to be that advocate! I was divorced, remarried, had a natural birth 8 lb 2 oz, 21″ son (now a senior in H.S. with an Air Force ROTC scholarship for College 🙂 ), divorced a second time, raising my son as single mom.

Fast forward to 2012, PAO had been AMAZING!! No pain, no real issues… Some popping, some creaks and clicks but I was UNLIMITED and unstoppable! Then, pain started setting in… limitations in sitting, walking, positioning. Went to local orthopedist specializing in hips and anterior hip replacements, knowing that was my only next option. I underwent an Anterior rTHA 2013. Amazing the difference… 24 hrs in the hospital, full weight bearing with a walker and no real restrictions. I did end up with a herniated L4-5 as I recuperated but otherwise – Trucking On! I still needed to lose the extra 40 pounds I had started to put on since the pain started… So I went on to take yoga teacher training in 2018 and continue to develop that practice and learn yoga anatomy and trauma yoga.

There is some pain in the LT groin now and on the femoral head so I had an appointment an orthopedist in Columbus, Ohio on October 3, 2019. The RT hip looks great, the Lt is only mildly dysplastic and nothing needs done at this time. I did get an SI belt… WOW, that thing is impressive and relieves the nerve pain in my left leg down to my toes! I am somewhat hyperflexible and need to work on strengthening and not flexibility – flexibility can be a bad thing in hip dysplasia, as hypermobile joints can cause joint pain and result in higher rates of subluxation, dislocations, sprains and secondary osteoarthritis. Physical Therapy, here I come 🙂

My story is one of genetics. Although I am the first diagnosed, I do not believe I am the first in the family. My father has hip pain. My sister has hip pain which was diagnosed without any xrays as over-activity/use. My paternal cousin’s second born SON has DDH and wore the Pavlik harness. My niece’s first born princess (in the images here – Willa Roselyn) has DDH and wore the Pavlik harness.

This makes me focus on if there a program that we can start in infancy to develop the musculature and surrounding joints/foundation to prevent adult onset early osteoarthritis and joint destruction utilizing a holistic approach? Researching different countries’ therapy techniques and approaches to DDH for prevention of adult onset sequelae leads me to believe that there is hope. That one day maybe we could develop a holistic program for Hippies that includes nutrition, yoga, massage, exercise, meditation, essential oil therapy/plant medicine and guided imagery.

As M&M says in one of his songs, ‘its like a tornado meets a volcano’ ~ my life has been a whirlwind. Yet, it’s all in how you look at it. I choose gratitude! I am stronger for my weaknesses and wiser for my mistakes. My current partner and I have a farm we are starting with a lot of acreage that I plan to walk, plant/harvest and work until I expire. I will continue to study this diagnosis, the approaches to management and prevention of sequelae and adult onset DDH with it’s comorbidities. I will continue to advocate for this cause, for myself, and my family, and for all of us HIPPIES out there looking for answers.
Thank you for reading my extremely lengthy journey ~
Kelli – Nurse, Farmer, Yogini and Holistic Medicine Student





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Kelly

Kelly

hi , I’m 23 years old from Dublin , only started to have severe right hip pain in the past year ,visited my doctor she...

hi , I’m 23 years old from Dublin , only started to have severe right hip pain in the past year ,
visited my doctor she sent me for a x-ray and then I was sent for an mri , after this I was diagnosed with hip dysplasia. Apparently its quite bad as in the wear and tear around my shallow hip joint is very badly worn (hence the pain) , every single day I have pain when I sleep and when I walk and when I go to the toilet and when I stand its never ending but you just deal with the pain I suppose , sometimes I think I’m going mad trying to explain to my boyfriend or family how much pain I’m in , I don’t want to take pain killers everyday (some days I have to) and I don’t want to have this pain for the rest of my life its draining.
I was so happy when I finally got an answer to this dark cloud that’s standing over me , the surgeon said that he puts his house on it that ill need the full hip replacement in the next 5 years! (because I wont be able to take the pain anymore)

that’s scary!
– thoughts that run through your head
– is the pain going to get worse ?
– will this affect me having a child ?
– am I going to end up addicted to pain killers in the meantime ?(will they even work anymore)
– am I going to push everyone around me away due to the stress and pain?
-am I going to get so unfit my recovery will be even harder?
– is there anyway I can avoid surgery ?

a lot more thoughts that I just cant remember right now ,
can anyone relate to this ?

current situation is I haven’t had to the operation , few months after diagnoses now and pain is still there and I feel getting a small bit worse.
from the way I walk to aid my hip I always have a lot of pressure and tension on my back and lower back which makes it so hard to sleep at night , always need a thick pillow to sleep with between my legs to aid the pain.

I FEEL LIKE ITS TAKEN OVER MY LIFE





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Khristie

Khristie

1980sMy story begins here, My mother, 19 years old, at six months into her first pregnancy has been concerned about the movement of her child,...

1980s
My story begins here, My mother, 19 years old, at six months into her first pregnancy has been concerned about the movement of her child, there’s no movement at all, and her sister-n-law just gave birth to a still born baby girl. Her doctor assures her that her baby is indeed alive and growing ,and that she would give birth to a healthy baby not to stress out, it would only cause more problems. At delivery ,my grand mother at her side ,my mother gave her last push. My grand mother ,instead of a look of joy had a look of shock, in panic she covered my mothers face with the sheet covering her face so she couldn’t see as I was rushed out of the room.

I was born with Congenital Hip Dysplasia, Double Congenital Knee (patellar) Dysplasia, and Duplex Kidney Disorder. Through manipulations, and serial casting for treatment I was sent home ,without hope from the doctors that I would ever walk.

It did work! My mother still today talks about one of the best days of her life was when the last casting was coming off and the Doctor warned not to have false hope that my joints would most likely return to their original state. After my legs stayed in position for several hours they sent me home. My mom says she never saw before or since a baby so happy when I realized later that night that I could move my legs the first time since my birth, I was eight months old. I continued towards progression, learned to walk, then run,and I was deemed a miracle baby.

1990s
This is when my Kidney disorder came into light ,and the procedures to correct the defects, which is another story of it’s own ,and for another time.
Without any medical coverage somehow throughout the years I am getting regular check-ups ,but my hip and knee joints are treated like anyone else’s who have had a normal birth. I was not seen by a doctor ,or had x-rays during growth stages. At this point in my life my conditions were neglected.

2000s
It all came back when I signed up for the high school track team. Got my approved physical with no restrictions. The coach told me to first try the long sprint because I have really long legs. A third of the way through something very painful in my left knee and hip happened it felt like my whole leg just seized I couldn’t move my hip or knee joints ,and I hit the ground hard ,but still wasn’t taken to a doctor to see what happened. Some times I think that my mom wanted so bad to believe the miracle, that I was normal she didn’t honestly believe that there was a problem or issue to give attention.

Still in high school ,but not running track lol, I started my first job at a fast food joint. Between going to school in the day and work at night most mornings I was waking up to extreme stiffness in my hip and knee joints. This time I was seen by a health plus, which told me that it was juvinile arthritis to take nsaids every day. I was not given an x-ray.

As a young adult I had many jobs none that wouldn’t totally effect my life. It was all I could do, go to work, and come home in pain and try to do everything I could do for relief until my next shift. The pain led me down some wrong ,long ,and hard roads.
I got married ,and quit trying to work to focus on starting a family. I had two children, and stayed at home. The pain was there but I could manage with it, taking rests through out the day. I started having good and bad days, then it seemed like changed to bad and worse days.

2010s
The pain, in my body and mind. All the things my children ask me to do ,and get “I can’t baby”. When I walk my hip and knee joints do what I call “jumping”. Both of my Patella’s (knee caps) are fractured due to misalignment and grind ,and my hip is very close to dislocation with every step. I soon will undergo several surgeries to correct my joints because of growth are misaligned. I can’t do all the daily things that a homemakers and mothers do for their family , and I can’t work. I have tried to get help from social security without prevail. Daily life is so hard to get through for me between my conditions, and the hardships of having low income. I wish I could do so many things and ways to provide for my family. I have little to no support from my family, they still want to believe the miracle they dismiss, and avoid me when I’m suffering. Sometimes I wonder how much it would help me to have their support. I am now having depression stem from all the above. It feels great just to share my story. I am frightened of what comes next in my life ,if a wheelchair before my children are grown is in the future. Above all else I will not lose my hope ,and want for healing.





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Kiley

Kiley

As a parent the last thing you want to hear after your child is born is that something is wrong. I will never forget when...

As a parent the last thing you want to hear after your child is born is that something is wrong. I will never forget when our Doctor came in after our Daughter was born to tell us she had Hip Dysplasia. As new parents you are in shock. Our first reaction was is she in any pain and our next was educating ourselves about the disorder. Honestly we just didn’t want to believe it was true but after 2 different opinions and X-rays we had to face the facts of the long road of recovery ahead of us.

At 4 weeks she was put in a harness. The harness was a nightmare for us at first with clothing and car seats and outings but we made it work making special dresses and hoping she wasn’t uncomfortable. She wasn’t in pain but to us and everyone else that’s the first question they ask. Next at around 9 months she started to walk and we got the metal brace between her legs for a year but she was fast and determined and decided to start running next. Last came the calf and foot braces for the next 7 years. Everyday our Daughter just amazed us through all the therapy, X-rays, CT scans and Doctors she never let it stop her from crushing every obstacle in her way.

Today she is 14 years old. Her Hip Dysplasia is gone and her hips are perfect. She competed on several Select Soccer teams at a young age and Taekwondo. Eventually her love of Taekwondo Sparring took over around the age of 8 and she decided to continue her training seriously in Taekwondo. She is now working on her second degree Blackbelt and last year competed for Team USA as a Cadet in the Pan American Cadet/Junior Championships in Costa Rica and won the Silver for Team USA. She one of the top girls in her age group in the United States as a fighter. She also run Cross Country for her High School and is also one of the top girls in that sport.

I wanted to tell her story to give hope to all the other new parents out their getting the diagnosis for their child, I was you and know how your feeling. This disorder can be treated and corrected. It’s scary now but keep the faith your children can beat this and become the champions we know they are.

Wishing all health and healing. The Mehringer’s





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Kimberly

Kimberly

It’s been quite the journey mentally, physically and emotionally the past 10 years. I am a 31 year old female and was a competitive gymnast...

It’s been quite the journey mentally, physically and emotionally the past 10 years. I am a 31 year old female and was a competitive gymnast and college cheerleader. I have battled hip pain since 2010 thinking I kept having a groin strain from tumbling. In 2017 it started to get more frequent, more intense and the pain started to travel. My hip would give out for no rhyme or reason just simply walking in the grocery store. From deep aching pain on the sides of my hips, to subtle “jolts” in the groin from turning my leg the wrong direction. Once long walks started to be out of the question, I knew I had to do something about it. Believe it or not, running on my hips was much easier than walking but I hated to run (that’s dysplasia for ya! )

I am a chiropractor and my job is to help people manage their pain conservatively, ultimately finding the root cause of the pain. Living with this hip pain began to get incredibly tiring so I knew after trying every conservative therapy out there, something wasn’t right. No sleep at night turned into long naps during the day and weight gain from lack of mobility. Laying flat on the heating pad was the only relief I would get.

I never really vocalized how bad it was to anyone until I couldn’t take it anymore. I saw 5 local orthopedic surgeons, all of which said “your hips just don’t look right” after multiple series of x-rays and MRIs.
As a physician myself, it’s not really what you want to hear. The last doc recommended I head into NYC to see a hip preservation specialist. I thought all along I just had a torn labrum and needed to be repaired via an arthroscopy.

Once in NYC, they did more and more imaging to get a proper diagnosis. When they said “you have bilateral hip dysplasia”, all I could think about was dogs and immediate sadness. They explained how my socket was shallow and not covering my femoral head and the only way to fix it was to reposition the pelvis. After doing more research when I got home about the PAO surgery, I was terrified. I had my right hip done in October 2018 and I’m starting to really get my life back! I still have some bad days and deep aches out of no where but my leg is getting so much stronger! My right hip no longer gives out and I don’t have to walk like a waddling duck anymore! I am getting a left hip arthroscopy in 2 weeks to try to stay conservative but knowing there is a chance it fails without repositioning the socket again. Just the thought of losing my independence and being on crutches again is terrifying.

When you’re faced with a diagnosis like this, no one really understands unless you live it. If you’re reading this because you struggle badly like I used to, there is help out there. (Both physical and emotional help) I encourage you to join our Facebook groups and reach out to family and friends for support!





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Kristin

Kristin

It all started 6 years ago, years of discomfort, pain and limited mobility. The more active I became, the more the pain increased. After years...

It all started 6 years ago, years of discomfort, pain and limited mobility. The more active I became, the more the pain increased. After years of physical therapy and doctors, I had finally had enough. I decided to see a surgeon at the Hospital for Special Surgery located in New York. After many exams, including Cat scan’s, MRI’s and x-ray’s, I was informed about my condition. I was diagnosed with Hip Dysplasia.

For the first time in my life I finally had an answer about what was ailing me. Hip dysplasia was a condition I never heard of before. As I researched about it, I came across the International Hip Dysplasia Institute’s website. I learned so much about this condition and what the procedure would entail to help my condition. I was relieved to know, but of course, nervous at the same time.

I am 29 years old and I have had 7 surgeries in total including hip surgery last year. Four of those surgeries were hernia operations. It seems that because my hips were not working properly, my core (abdomen) was taking the blunt of it. My core was compensating and straining which led me to have multiple surgeries. I was informed that if my hip issue was discovered when I was younger, I would more than likely not have had the surgeries I that I did.

On July 29, 2015, I had a FO (Femoral Osteotomy) on my right hip. I was on crutches for 5 months in total and I am still doing Physical Therapy, 6 months post surgery. I am getting stronger each day and know that pain does not last forever. On February 23, 2016 I will be having a second procedure to remove the screws from my hip.

As I sit back and think that I will need the left hip done, EVENTUALLY, I am more knowledgeable about my condition and what to expect now. It was very helpful to educate myself about this condition. I am so thankful for the International Hip Dysplasia Institute for dedicating the time to help all of us through this journey. It is also wonderful that they are educating and researching ways to prevent this from happening to others.

To all of my hippies (people with hip conditions) out there, you are not alone! Thank you again to the International Hip Dysplasia Institute for making our conditions relevant and helping us through the fight. 🙂





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Laura

Laura

I was a baby when I was diagnosed with DDH. I had surgery when I was one so I don’t really remember anything about it....

I was a baby when I was diagnosed with DDH. I had surgery when I was one so I don’t really remember anything about it. My mom said that without that surgery I would be confined to a wheelchair my entire life and I would not be able to walk. Now I am almost 19 years old. I have to have a hip replacement surgery in the near future and it is very scary for me. When I was younger, the doctors were trying to put screws in my hip so that I would not need the hip replacement surgery. For some reason, the way that I was growing the screws would not help me.

I always remember having to go to the doctor and crying because I hated going to the doctor. But hey, I got pretty good at doing x-rays. I was always so upset because all my friends didn’t have to go to the doctor and get x-rays. It made me feel like there was something wrong with me. Of course, there was.

I distinctly remember crying in the waiting room one time when I was little with my mom. My mom had several miscarriages before she had me, and I still had something wrong with me. I remember crying saying that I wish I were never born (dramatic, I know, but I was young). All because I had to go to the doctor.

I still loathe going to the doctor, but I have to go less frequently now. It does get better. I don’t have any pain in my hip, I just know that it is out of place. My right leg is about 1-2 inches shorter than my left leg. I have a limp, but it doesn’t stop me from dancing!





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Laura-Jane

Laura-Jane

Tina~ I never thought I would ever go back and relive what happened when my daughter was born 23 years ago. This is our story and...

Tina~ I never thought I would ever go back and relive what happened when my daughter was born 23 years ago. This is our story and we want to share it to help others see there is light at the end of the tunnel and that its very hard to keep your glass half full but with love, acceptance, strength, determination and hard work it is possible.

10 months of trying to fall pregnant is long enough for anyone to wait when the pregnancy is all you want, a child of your own. You read that ‘wee stick’ and you find out you are pregnant. You know you have to wait many months until you can meet that little person you are carrying inside of you. Throughout the pregnancy you love this little person that you can’t even see. You imagine what they are going to look like and you pray that everything will be okay and they will be healthy. That’s all every mother wants. Having a pregnancy that had sickness the whole way through was a bit of a challenge. No history of birth defects on previous members of the family had been noted, as far as I was aware there were no warning signs or scans to detect what was to come.

Having renal colic at 35 weeks wasn’t easy and it induced my labour. The doctors stopped my labour and said it would be better to go full term for baby’s sake, which meant between 35 and 40 weeks, I had to attend the maternity unit at the hospital everyday to be placed on the monitor (this means they would strap the monitor to your tummy to pick up the baby’s heart beat on the screen). I also had to do a kick chart to monitor how many times the baby would move within 24 hours. One observation that was made was that there wasn’t a lot of amniotic fluid around the baby and she didn’t have a lot of room to move.

She arrived…Laura-Jane was born at 3:20pm on the 30th October 1994, weighing in at 7.11 lbs and was 52cms long. Following what I think are the ‘normal’ emotions after childbirth, feeling tired, overwhelmed and inexperienced, back on the ward I was left in my room with her, she was in this tiny cot all wrapped up tightly and all she did was sleep and all i really did was cry. I had waited so long for her to arrive and had so many things to tell her. Breast feeding was not an option, Laura-Jane was having none of it, She had her first bottle that evening and then it sort of went quiet.

The following morning when the doctors did their rounds at approximately 8:45am, my world was shattered. Laura-Jane was taken out of her baby grow and nappy to be examined by the doctor and the doctor checked her hips by lifting her little knees to her chest in a circular motion. The doctor then said the term “CDH”!!!!!!. WHAT IS CDH, I was thinking. I was then told by the doctor Laura-Jane had ‘clicky hips’ and that she was to have double nappies straight away. (so my disposable ones went straight out the window) All the questions you think you would ask have not even come into your head yet. A sudden feeling of panic, distress and sadness all rolled into one. The lack of understanding what CDH even was can not be put into words. Looking at your new born baby that now has this kind of disability that you cant see from the outside, and you ask why? why has this happened? where has it come from and what comes next?

Being told it was the left hip only was no reassurance, but thank-god the right hip was okay. The doctors team had their chats, they had explained everything to me but i didn’t take it all in as I was in shock that there was a problem with my precious baby daughter, as they left i  felt very distressed with the news and when I looked at  Laura-Jane, that’s when all the questions come flooding into my head and the tears streamed down my face. “I have let her down, this is all my fault, How will i cope? how will she cope? and what will the future hold?”.

We were discharged from the hospital 2 days later on the 1st November 1994. We left the maternity unit with paperwork containing many appointments for the coming weeks. Laura-Jane was due to have her first scan in the middle of November where we to find out how severe it really was and how life was about to change.

Read more about Laura-jane’s DDH journey on her personal blog:

https://notwohipsthesame.wordpress.com/




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Lauren

Lauren

Hi! My name is Lauren, I’m 18 and I’m from Scotland, UK. I was diagnosed with hip dysplasia when I was born. In the UK,...

Hi!

My name is Lauren, I’m 18 and I’m from Scotland, UK. I was diagnosed with hip dysplasia when I was born. In the UK, the health system is very different.

When I was born, doctors told my mum that I would be okay and I would grow out of it. My hip joints at this point were not completely formed meaning my legs were stuck in the air all the time! Over time, my joints formed and I was a normal happy child. It wasn’t until I was around 12 years old that they really began to hurt.

At primary school, I loved running and was a keen cross country runner. When I started to feel the pain, I had to stop. I visited my GP and they just gave me painkillers. This didn’t help at all and I couldn’t climb upstairs at all. I spent a lot of time in bed as I couldn’t move. I visited again and was giving physiotherapy. The physio made the pain a lot worse and by this point, my hips were starting to dislocate and wear away the tendons in my legs. I was referred to a child orthopedic who said they cannot do anything for me until I have grown fully.

Six years on, I have been given five rounds of physiotherapy, a round of hydrotherapy and ultrasound therapy as well as countless prescription drugs. I am constantly at my GP but they refuse to send me to a specialist. It is affecting me daily and the pain in my hips has moved into my back and my knees which is really quite horrific. I now use crutches most days to get around. I joined my local gym to try and keep myself active and healthy but as I can’t do any cardio, it is a real pain. I spend most of my time on weights but even the weights are a painful ordeal.

I found this website today and I love it. It’s great to see everyone helping each other as here in the UK, I don’t know anyone else with this condition. I’m stuck in a rut with my GP, but my advice to anyone who’s child has hip dysplasia is to keep on at doctors etc and get it sorted while they are young. If my doctor had done his job properly, I would not be in this position.

Lauren 🙂





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Lauren

Lauren

My story with Hip Dysplasia began in July of 2014. My hip suddenly hurt, and it hurt really bad. The pain was constant … it...

My story with Hip Dysplasia began in July of 2014. My hip suddenly hurt, and it hurt really bad. The pain was constant … it hurt when I stood, it hurt when I sat, it hurt when I walked, it hurt when I ran … and it was not going away. My hip was constantly clicking and felt as if it was catching on something – especially when I sat for a long period of time.

For as long as I can remember, I ran almost every day. When I wasn’t running, I was kickboxing, playing soccer, spinning or checking out the latest workout fad. I had been playing co-ed soccer and at first attributed the pain to a hard collision with a male goalie – which later I discovered was not the case. To say the least, my 28-year-old body was accustomed to bruises, aches and pains. But this, this was different. My pain progressed over the next few weeks. There were some days where the pain was chronic and all-consuming – other days I felt okay – not great, but okay. There were a few days where the pain was debilitating making it almost unbearable to sit, stand or sleep comfortably. And, running was completely out of the picture. This, for me was one of the hardest things to accept. I knew it was time to see a doctor.

The journey to getting properly diagnosed was long and stressful. From the first doctor saying he had no clue what was wrong with me, to MRI’s and X-Rays, failed cortisone shots, physical therapy treatments and a drawer full of mind-clogging paint meds … it had been a long year. It was confirmed after an invasive MRI that I had a tear in my labrum on my right side. My next doctor then recommended me to an Orthopedic in St. Louis to schedule the repair surgery. When I arrived and once again did more X-rays I was told I indeed have a labral tear, but I had a much bigger overarching issue – a rare condition called Hip Dysplasia – to my surprise not caused by soccer, but by genetics. HD is a congenital problem, but the symptoms don’t always show up in infancy or childhood. Even though there is a tear in my labrum, fixing the tear would not fix the root of the problem. My lack of coverage over my femur was the problem. Over time, my joint would become arthritic much faster than a normal sized socket. Hip dysplasia includes a group of disorders that have deformities of the joint. Most commonly, hip dysplasia is characterized by a “shallow” socket that does not adequately cover the femoral head.

So yes, to answer your question, like many dogs and many babies … I have hip dysplasia. The doctor then told me I was an excellent candidate for Periacetabular Osteotomy (PAO) surgery (My first reaction was, what the **** is that?) So to give some background, PAO surgery is a hip preservation surgery. This surgery involves cutting the pelvis around the hip joint and shifting it into a better position to support the stresses of walking. After the hip is re-positioned, it is held in place with screws until the bone heals. The nurse also mentioned it has the most difficult recover of any orthopedic surgery … awesome.

Even though the surgery sounded extremely invasive, has a very long recovery and sounds, well terrifying – I went ahead with it on July 9, 2015. I strongly believe the positives have outweighed the negatives. I had a 4-day hospital stay and three months off work to recover. The long road to recovery consisted of 4 weeks of sitting in a recliner watching Netflix, learning to walk again with a walker to crutches to a cane, and finally completing 6+ months of physical therapy. I was off crutches by my 30th birthday in October, and that was my big goal – I didn’t want to be a 30-year-old with a walker, I felt old enough as is.

Recovery was not easy, not only physically … but maybe even more so mentally. I was very lucky to be surrounded by family and friends that visited, cooked, sent gifts and were willing to be chauffeurs for me for a few months. It meant the world to me they were there for me – even though I know I was not the most pleasant person to be around.

All and all, the year of big struggles and small successes, was more than worth it in the end. One year later, I have gotten back to an active lifestyle and am no longer constantly bothered by pain in my hip. I no longer dread a long car ride, store my favorite pair of heels in the back of the closet and experience pain from walking around the mall for too long and/or sitting at my desk at work for too long. Even though I am not able to run the mileage I had grown accustomed to, going through the difficult experience has made me really appreciate the things I am able to do now pain-free, turns out low-impact activities like biking, yoga and walking aren’t so bad after all.

Going from being extremely active and healthy to being in constant pain, to undergoing three hip surgeries in the past two years has been quite the whirlwind. My scar – something that at first I was mortified of – I now see as constant sign of how I strong I am. I went through one of the worst experiences of my life, and persevered and overcame that challenge. I came out of it a stronger, more appreciative person, that sweats the small stuff a little less than I used to. I am glad I have that big, ugly scare to remind of that





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Layla

Layla

My little Layla had developmental hip dysplasia and these stories helped me get through it so I decided to post my own too… She was...

My little Layla had developmental hip dysplasia and these stories helped me get through it so I decided to post my own too…

She was born on 8/11/14 and was checked a few hours after by a nurse…Who said she had ‘clicky hips’ I didn’t know a what that meant and I asked her if it was bad and she said “I’m sure it’s nothing to worry about” so I dismissed it…a doctor then came and confirmed it and said she has DHD and that she needed a scan…she was scanned later and we found out she had it really bad and that she needed a pavlik harness…a week later we returned to the hospital and had her fitted into it…it was awful…But we knew it had to be done and we knew it wouldn’t be forever…they told us it should only be for 2/3 months…My daughter was 2 weeks old at that time…so tiny and fragile…

We were advised to come back for another scan a month later…which we did…The results of that scan were very good she had improved alot…And they said that she wouldn’t need an operation…The doctor told us that she would only need one more month so we left…endured another month..And came back for another scan…it showed that her right hip was less than 1 degree away from 60 but that the other one was far behind…We had to keep it on for another month…this month was the hardest but we did it and came back…this time the scan showed that her right had completely healed but that her left hip was very close but not yet healed…we had had enough of it at this point but there was nothing we could do…the doctor said come back in 2 weeks…we came back and scanned her hoping it would be the last time…And we received the wonderful news that she was healed and can now remove the harness…what a relief it was to hold my little girl without that harness…

Now she is 5 months old and and we are waiting for her scan next month to check if it’s all good and that the problem hasn’t come back…

I hated the harness…im not gonna lie…but it was worth it…

A little advice for new mummies who have to go through this…buy your own harness! I regret not buying my own and using the ones they offered at the hospital…they were so bad! They would get dirty and I didn’t have a spare to use while I cleaned it and so I would just wipe it but it would stink and the Velcro would get hard and it irritated her skin…so buy your own there are some really cute ones that have cloth wrapped around them to not irritate the skin…

If you have any questions at all please contact me I’m happy to help with what I can 🙂

You’re doing good mummy/daddy!

Be strong…stay happy…it will be over soon 🙂





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Leah

Leah

I was diagnosed with Congenital Hip Dysplasia around 1 year of age in 1982. A friend of our family had noticed a difference in the...

I was diagnosed with Congenital Hip Dysplasia around 1 year of age in 1982. A friend of our family had noticed a difference in the length of my legs. I never really crawled. I am told that I pretty much skipped crawling (other than scooting). I was always told that this was a hereditary condition. My Aunt was diagnosed and always walked with a limp. She went on to have 4 children. 2 of her children also had this condition.

At the age of 1, I was put into what they called “traction”. They tried to reset my leg with some type of hanging device. There was a waiting period to see if that would correct the issue. That did not work. At the age of 4 I had another surgery where they tried to correct it by operating on my femur bone. I have a scar about 10 inches down the side of my leg from it. After that surgery was complete, I was put in a body case for about 6 weeks. I proceeded to go through physical therapy and learn to walk again. During my post-operational exams, my doctor concluded that the surgery did not work. They tried the same surgery again when I was 6 years old. I went through the same recovery process. I had another body cast for 6 weeks along with physical therapy. During my post-operational exams, my doctor concluded again that the surgery did not work.

At the age of 8 years old, my doctor performed a pelvic osteotomy on my hip. Again, I was in another body cast for 6 weeks. Post-surgery it was back to physical therapy and learning to walk again. (It left an additional scar about 10 inches long down the side of my body.) However; this time, during my post-operational exams, my doctor saw a stable improvement in my hip.
I am now 33 years old. I live a very normal and active lifestyle. That is the key element to this issue. You must stay active and keep that hip mobile. I do a lot of mobility exercises. I know my limitations. Running and jogging aren’t really good for me. However; I am a member of a Crossfit gym. If anyone understands Crossfit they know that it is a pretty intense work out. I modify my workouts to support/protect my hip. Keeping one’s weight down is also a key to this as well. As a 33 year old woman, I have to watch my weight. I can feel my hip mobility decrease when I put on added weight. It aches more frequently if I am not active. I’m trying to keep myself in the best shape possible because I want to try to avoid a hip replacement for as long as I can. Maybe I’ll never have to have one if I keep my hip healthy and mobile.

I have a lot of experience and information regarding my case. This is a long drawn out experience summarized. I have a ton of pictures of being in a body cast. I would love to share any information that could be helpful to someone else. This was difficult on my parents when I was a child. I can’t imagine what some of these parents are going through. There isn’t a lot of data out there that I’ve found on post-surgery osteotomy results. I want to learn more about what (if anything) I can do to prevent myself from having a total hip replacement. It still feels like a “wait and see” game at times. If I can be of any assistance to anyone, please feel free to email me or comment on this story.





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Leah

Leah

I am 38 years old and had been having hip pain in my right hip for the last 6 years. I approached my doctor at...

I am 38 years old and had been having hip pain in my right hip for the last 6 years. I approached my doctor at the time about this and was sent to a chiropractor. They did x-rays and found nothing of concern with my hip but did find issues with my neck and lower back. He said he was not able to help me and if another chiropractor tells me he can by cracking me to run. So, I just lived with the pain. Fast forward 4 years and a lot of weight gain due to lack of exercise because of the pain and continue injuring myself. I tried exercise again and was down about 30 pounds until the problems started back up again and with advengance. August 22, 2017 I went into work knowing I should have stayed home but could not due to missing work due to the pain previously. I had used up my vacation time and my FMLA. I had to hold on to things as I moved around trying to do my job, which is shop work. By the end of the night (I worked third) I could barely make it to my car. I sat in my car and cried. I went home and called my doctor right away. She took me off work until further notice. This is when my search started by going to different doctors. The first thing that was found was a herniated disk in my neck. I was then introduced to a new doctor. He did the surgery to fix my neck the best he could. I’m still left with constant headaches and limited motion. He started looking into my lower back and ordering different test. April of 2018 I went to Grand Rapids, Michigan to have a spec scan. To his surprise my back did not show up take but my hip did. He then sent me to a orthopedic surgeon. This surgeon did x-rays and sent me to have a hip mri arthrogram done. I went back for the results a few weeks later. I was told that I had tares in the cartilage around my hip joint but my socket was very shallow and there was no point in repairing them because it would just happen again. He referred me to another doctor to see if a PAO would be possible. In November of 2018 I went to see this new doctor and found out that I have hip dysplasia in both hip, the right being the worst. He ordered another hip arthrogram mri because the previous one was not the best quality. He called me with the results. My hip had too much osteoarthritis for a PAO to be effective and a total hip replacement would be my best option. So, I started looking for a surgeon. Meanwhile, I am now walking with a cane for short distances and a walker for anything with a larger distance. I was told I need to lose weight in order to qualify for a total hip replacement so I went to a dietitian and lost 37 pounds, which is really hard to do when you cannot exercise. Regardless of the weight loss the pain stayed the same. I have now seen two surgeons about a hip replacement and one told me I was too young and the other told me that there was not enough osteoarthritis to justify doing a THR. He told me I was in like a limbo where my hip is too bad for a PAO and not bad enough for a THR. I cried all the way home, feeling completely hopeless in my current situation. I am still beyond myself at this point and do not know where to turn. I want my life back. I’m not sure what to do at this point besides to continue this fight and refuse to give up. I will continue my new healthier eating habits to continue to lose weight and hopefully find a surgeon who will not let me live in this horrible limbo where 90% of my life is lived in a recliner. I’m too young to feel this old.

My hopes in writing my story is that someone, somewhere will read this and be able to give me some guidance. Whether it is a lead to a good surgeon or just some advise on how to ease the pain while I am stuck in purgatory.

I want to thank everyone who has written their stories because it has helped me not to feel so alone in this fight. I hope mine will help others too who are new to this debilitating condition not feel so alone.





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Lee

Lee

I was diagnosed with hip dysplasia at the age of 31, I was a semi pro footballer for many years and thought the pain i...

I was diagnosed with hip dysplasia at the age of 31, I was a semi pro footballer for many years and thought the pain i was getting was just wear and tear as i was getting a bit older. after numerous appointments with physios telling me i wasn’t stretching enough matches, i new something was more serious.

Finally i get submitted for an MRI scan and get an appointment with a specialist, it was then i got the news that i had severe hip dysplasia in both hips. shock wasn’t the word, i left the hospital in tears that day knowing i wouldn’t be able to be as active as i always was.

10 years on and i haven’t seen a doctor since, I am in pain on a daily basis but i just have to manage it as best i can. i still keep myself active doing activities that are low impact such as swimming, cycling, body weight exercises. I know one day i will eventually need my two hips replaced but i will remain positive and try and go as long as i can before opting for surgery. I just thought i would share my story because i think keeping active has definitely helped my mental health as well as my hip dysplasia. I try and keep a very positive attitude at all times but i am  finding its getting harder year by year.Most people look at me and think i am very fit and healthy as they cant see whats beneath, I don,t usually tell people as most wouldn’t understand because i look well on the outside.





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Lennie

Lennie

The day after Lennie arrived she was diagnosed with hip dysplasia, 8 weeks later we started the hip journey. We first started with a pavlik...

The day after Lennie arrived she was diagnosed with hip dysplasia, 8 weeks later we started the hip journey.

We first started with a pavlik harness, which was put on incorrectly and cut lennie along her stomach and her armpit, I couldnt handle watching my girl scream in pain so i cut it off of her with scissors. We went back the next day to have another pavlik put on which I demanded the ortho herself put on. 4 weeks in we were told the hips were looking really good. 8 weeks in we are told its not working and now we need to discuss a closed reduction. Our ortho would not do the surgery prior to 6 months so we gave the rhino harness a shot, which required an xray, I was asked to step out of the room for said xray, when I returned Lennie’s lip was cut open, after shoulder checking the xray tech because he refused to get out of my way I filed a complaint with the head of imaging at the children’s hospital I still don’t know to this day what happened in the room.

The rhino failed.

Then we were booked for a closed reduction with a tendon release, this was an awful experience handing Lennie over to the surgeon and going to the small waiting room to sit and wait over an hour until we could see our baby in the recovery room. Which was another nightmare she was so confused and vomitting from the anastetic, we were sent for a CT scan before we left hospital. The CT came back saying the left hip had slipped so the cast was removed before we were sent home.

We were booked in 2 days later to go thru this crap again. Handed her over again went into the waiting room, waited for 1.5 hours to go into recovery and see her once again hysterical. We later found out the doctor had taken an x ray machine into the OR and the first cast they put on did not hold the hip so they had to cut it off and redo the cast (so we were sent home in our 3rd spica cast)
6 weeks later yet again I am handing my baby over so they can put her to sleep for a cast change (cast 4).
5 weeks later cast is removed and were told the dreadful news her right hip was completely dislocated.

We are now scheduled for an open reduction, this was by far the worst hospital visit, surgery went an hour over what they expected, leaving a nervous wreck of a mom in a waiting room watching the clock tick and not having anyone come to explain what was happening drove me into a hysterical break down(cast 5, 4th round of anastethic, this cast however was half cast only right leg).

The day after surgery we are sent for a CT to confirm hip is in, we got some good news it is in, however the cast was so tight Lennie was having trouble breathing, so they now had to pull out the saw and crack the front of the cast, that same evening we are in the emergency room for rapid breathing and a high fever. At this point I had a breakdown, hyperventalated, cried so hard i almost puked, thank god I had my husband there to talk to me thru everything. They don’t know what caused the fever to spike but it broke in the ER.

2 weeks into cast we had xray that confirmed hip has stayed in place, and ortho was very happy with left hip as well, which was not casted this time but it was the initially the worst hip of the two.

September 15 we got the cast removed and told we have healthy hips!!!

12 weeks later we are hit with yet another gut punch from ddh, the left hip is not sitting how the doctor wants it to. So we are looking at yet another surgery followed by a spica in our future, because the hip is not dislocating this surgery is being pushed until she is 2 or 3.

No one mentions ddh at any pre appointments, no books mention it. I had ddh when I was born but I was sent home in a brace for 3 months I had no idea what happened if the first harness does not work. This journey has been a roller coaster of emotions for us, I feel like our first year was robbed of so many things because of countless doctors appointments, surgeries, casts etc. I learned I am much stronger then I thought I was and that my daughter is an absolute rock star. We plan on enjoying this next year to the max!





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Lily-Anne

Lily-Anne

I was told at my 72 hour check after have my little girl that she had a problem with her left hip. My partner and...

I was told at my 72 hour check after have my little girl that she had a problem with her left hip. My partner and I were told that she would be referred to Children’s Orthopaedic and we would have appointment within 2 week from her birth.

On Thursday 22nd February 2018, we went to the hospital and lily had a scan on both her hip and we were told she had hip Dysplasia and she would need to fit with a pavlik harness for 16 weeks. We made our way to were the harness are fitted and a lovely lady came and fit lily with her harness and we were told she had to the for 6 weeks all day and all night and we would have to make weekly trip to the hospital for scan and to have her harness checked.

When we walked out of the hospital all I did was cry because I thought I cause lily to have hip dysplasia. After reading lots about it on the internet i knew it was nothing to do with what I did in my pregnancy or birth. We went for weekly check up and every week we got told that her hip were going back in and on week six we got told we could start to take lily out of her harness for a hour a day. After that we went to two hours a day for a week, then 4 hours a day for a week.

We were going to the hospital every 2 weeks for check ups and then we went to 8 hours day for a week and eventually we went to just wearing the harness at night for 12 hours. On Thursday 14th of June we went for a check and we were told that Lily could come out of her harness for good but we would need check up every 9 week in till her first birthday. Also we decided to put lily on a program to help with research in to hip dysplasia. She will be on the research program in till she 18 year old and just hope it help some other people children in the future.





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Linda Bleck

Linda Bleck

My story brings me to writing this post. It is imperative that awareness and early diagnosis of this condition becomes noticed to avoid my current...

My story brings me to writing this post. It is imperative that awareness and early diagnosis of this condition becomes noticed to avoid my current situation.

Let me begin by saying that I am a very positive, faithful, and try to be a humorous person. These are my greatest blessings. They give me immense strength.

I am almost 50 this year. I was born the 7th of 9 children in a northern US city Waukegan, IL. I grew up on a tree farm, my father was an architect and my mother was an illustrator for Hallmark. My whole life I was told how strong I was. I climbed out of my crib at 9 months, carried my newborn brother at the age of 2 and half, and became an athlete of some competitive success. I did it all playing tennis, badminton, raced bicycles, hiked, golfed, played volleyball, and ran until I couldn’t. At 12 I complained of knee pain after volleyball season. Mom brought me to a doctor he said there was nothing, so I carried on. At 13 the pediatrican noted I had bowed legs, but I wasn’t going to be a model ,right? ( and you will never wear that toupe correctly, I thought) In my early 20’s I began my career as an illustrator. I moved to NYC and had success. I grew my business. I met my husband there too. The next 20 years I sat working long hours and exercised in between. I became a pretty good golfer too, that was in the nuptials. I had my children in my early 30’s. It was after that I started to have real pain and back spasms, but I carried on with high level activity. I just though it was from over use and that was normal for a person who can’t sit still. I will remind you I was 7 of 9 kids.

So I am going to flash forward to my early 40’s. The pain was now pretty much a constant in my back, but I didn’t want to see a doctor because I might be labeled a pre-existing condition and my husband was just about to finish his residency and change jobs. ( He went back to school at 30 . It was his third career. A chemical engineer in sales, and to top it a masters in business from Northwestern, and yes I supported the family!) I took it upon myself to do some things to help. I lost weight and exercised everyday. In 2008, I couldn’t take it any longer I went for a MRI because the pain in my back was getting worse. It revealed very little. The doctor said I had weak core muscles and gave me some Meloxicam and sent me on my way.
My friend, a personal trainer, suggested she could help me. So I spent two years building my core. Sure I was getting stronger, but things that never hurt started to become problems. I had terrible pain in my feet. Once my foot became swollen and purple on a vacation from walking long distances. By the time I saw the doctor he said it had corrected and no need for any x-rays. He diagnosed me with metatarsalargia and gave me some foot pads. It was like walking on glass. I would also have occasional knee pain. By 2011 my right hip started to become a problem. I started yoga , but I couldn’t even get into simple poses. My hip was locked up. The straw that broke me was that I couldn’t walk anymore. I had terrible pain in my hip flexor and I could no longer walk. My good friend who was 13 years older had absolutely no pain and we were doing the same activity. I asked, “Do you have any pain?”, she answered “No”. “Something is really wrong with me”, I said.

In 2012 I asked for a PT consult. They sent me for 2 months treatment. The PT suspected something more than a torn muscle, but she was able to restore mobility to the hip. She urged me to seek an orthopedic consult if the pain returned. In March of 2012 it did. I had just completed redoing my basement. I trimmed out the entire room, I was building sets for my daughter’s theater group, and in the middle of a doing a children’s book. I had pain right in the joint. Yikes I am wearing myself out just writing this!

Finally in March of 2012 I had a correct diagnosis with a simple x-ray. “You have bi lateral dysplasia” the doctor told me. “What?” I responded. I was quite calm. I took it all in. He explained that eventually I would have the hip replaced. “Would this fix my back pain too?”, I asked. “Maybe and I hope”, he said. In the meantime he gave me a kenalog shot with cortisone and ordered an MRI. He called me back in May of 2012. “Well he said, your hip is gone.Bone on bone with arthritis.” They found cysts, tears in the labrum, subluxation of joint, and a tendon tear. “Now I did it!”, I thought to myself. He couldn’t believe I had gone this long with no diagnosis or pain. “You never were in a harness?, he asked. “Only to keep me from running away. True.” I replied. How about pain?, “Yes my whole life.” He told me all my hyper activity probably gave me many extra years. The labrum was three times normal thickness on both sides. “A monster”, he said. He said he would have me come back in August at the end of the summer and I could think about what I wanted to do for the next phase of treatment, which was a THA or cleaning out and repair, but THA was inevitable. The other hip would be probably in 5 years. Okay I’ll see you then. I walked out called my husband and started to cry, but I got it together.

My mother was very I’ll and I didn’t want to have it done. I was walking around bone on bone and just using Aleve for pain control. It didn’t keep me down I played golf all summer. I also kayaked on Lake Michigan, surfing the waves. I came to visit my mother often. No doctor really ever thought I was in pain or that bad, because I just kept moving forward.

I walked into that doctor’s office on Aug. 17th. That day I had a hole-in-one and two birdies on the other par 3s. I beat the club champ. I shot a 32 on the front nine of the golf course. A course record, and all with crappy hips and crappy back. I signed the waiver and on October 15th I would have a THA reconstruction and tendon repair. I told my doc of my golfing achievement. The doctor said, “Now you are making me feel bad.” He never really told me what was going to be realty. Maybe for the best. Four days later on August 21st my mother passed away. She told me she was afraid I’d be in a lot of pain. In September I completed my last work obligation. A video scribe for Abbott Labs.

On Oct 15th my life changed dramatically. I didn’t know what was to come. Man that replacement hurt! They loaded me with oxycodone and muscle relaxers. I had spasms that felt like a knife was being jabbed into my hip. I went to my daughter’s play 4 days after replacement too. Sitting in a wheelchair grinding my teeth. Sarah got the lead as a freshman. It was really unexpected and I wasn’t going to let this keep me down. Two weeks passed and things got better. They put me into PT right away. I spent the next three months in PT. They supported me physically and mentally. It was really rough and I was trying to raise two teens. Thank God I was an athletic person. I had a lot of other muscles to keep me going. I also had a strong mind and good sense of humor!

Now I am almost three months post op and my back is crazy in pain. I kept telling my PT and she would send notes to the doctor. But nobody seemed to be that concerned. He gave me another shot in my other hip, because pain was increasing on that side. It helped a bit. Shortly before Christmas I got up and my legs buckled I couldn’t walk. The pain in my back was excrutiating. I wheeled myself into the PT and I was crying. I NEVER cry.:)
The doctor ordered a pain management consult asap. They ordered an MRI and an epidural. Luckily there was a cancellation and I got in. “ I don’t think you’ll need surgery” the pain management doc said.

Three epidurals later I had some relief ,but when those babies wore out, ouch! Back to square one. It’s now April 2013 and I cannot function, I can’t get the muscles to work to get my new hip rehabbed. They ordered an EMT test to make sure. Yes indeed I have significant back problems. I have stenosis and degenerative disc disease. Yahoo! Tell me more. “If it walks like duck, talks, like a duck, it is a duck”, the hip surgeon said. “Quack, quack, get me to the spine doctor please!”, I said. The spine surgeon became the team quarterback at my request. A great surgeon Dr. S gave me a decompression and foraminectomy on May 14th.

I am now 8 months out from back surgery. I had an MRI of the other hip and it is stable, but plagued by tendonitis. My SI joint continues to have pain. They marked it moderate in the MRI report ,but you are kidding me right? Somedays it’s terribe pain. Lordy Lord! I see a wonderful PT a couple times a month. Today I exercise everyday strengthening and maintaining my core. I mix up my daily exercise routine with aqua walking, swimming, stationary biking. I have to be very cautious as too much causes tendonitis to flair. I am off all pain relievers. I take Celebrex 2x a day and Gabapentin. I rest a lot too and ice. The exercise keeps my mind sharp and my overall mental health stable.

I continue to be very positive and focused on healing. I know someday I will be functioning. I will never be the athlete I was, but I still have my blessings. My dear husband is a great guy. He is very patient. We have been married 24 years and I will tell you that the last two years have made our marriage rock solid. I told him today that I will require more maintenance this year as my crappy hip is limiting and he is to smile and just do what I ask. It’s a perfect marriage. ☺





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Lisa

Lisa

My name is lisa, I am a 30 year old veterinary nurse and I have two beautiful children, Jacob 18 months and Evie 5 years...

My name is lisa, I am a 30 year old veterinary nurse and I have two beautiful children, Jacob 18 months and Evie 5 years old.

I would like to start by giving you a quick insight into my journey with Hip dysplasia and my PAO surgery with Mr Marcus Bankes on the 14/01/2014

As a child I suffered with pain in my left hip, which did not improve with physiotherapy. I was eventually diagnosed with over tight tendons as I was also pigeon toed. At around 11 years old I underwent a psoas tendon release on my left hip followed by a tensor facalata release at age 15. Eventually with months of rehabilitation I learnt to walk again without the aid of crutches. Although I wasn’t pain free I was now mobile enough to pursue a career in veterinary nursing.

Over the years I suffered with a lot of pain in my left hip but I put this down to the previous surgeries.
In June 2013 I started to suffer with severe back pain and right groin pain, to the point I could hardly get out of bed in the morning and looking after my children was becoming difficult. I was referred to a spinal surgeon who requested x-rays of my pelvis and spine. He advised me I had very uncovered hips bilaterally (both sides) and that to compensate for this I also had a lordosis of my spine (inward curvature of the spine) which was putting pressure on
my facet joints. He treated my facet joints with steroid injections but advised me that he
couldn’t do anything more to help me until I had my hips treated.
In November 2013 following evaluation by a hip surgeon and diagnosis of bilateral hip
dysplasia. I was referred to see Mr Marcus Bankes as he felt I was an excellent candidate for
PAO surgery (Periacetabular osteotomy).

On the 22/11/13 I went to London to be evaluated by Mr Marcus Bankes, a leading PAO surgeon. Following MRI and CT scanning he confirmed the diagnosis of bilateral hip dysplasia but also diagnosed a right labral tear and hypo mobility with a score of 6. He felt this was why the pain in my right hip had significantly increased and my walking distance was now down to 15mins with severe pain. He advised that I was an excellent candidate for bilateral PAO surgery but advised me of the possible complications, so I could have all the information before making a decision. I decided to go ahead with the surgery and we booked for the right hip to be done on the 14/1/14.

Being an active mum with two young children I was extremely worried about how I was going to cope and I had been advised that I would require 6 weeks of constant support. I was lucky enough to have a very supportive husband and family and although my husband and I had separated a couple of months earlier he said he could take alternate weeks off to look after the children and I, if my mum could helping out on the other weeks. I also had some friends who were able to help out with school runs if we needed them too.

My plan over the following weeks before surgery was to lose some weight, although I wasn’t very over weight I felt It would be better for my health and recovery if I did. I also ordered a wheel chair and practiced with some crutches as I knew I wouldn’t be allowed to leave hospital until I could go up and down stairs safely. I started to take a multi vitamin containing iron and ate iron rich food such as broccoli and red meat, on the advice of my surgeon. This was because one of the complications with PAO surgery can be heavy bleeding and if I could build up my iron reserves, hopefully I wouldn’t require a blood transfusion post operatively.

I am now 4 weeks post pao and I have set up a face book page called My PAO Journey. The aim of my page is to give an insight into my recovery from pao surgery. I hope this will help and support other people trying to decide if surgery is right for them.
I am also trying to raise awareness of DDH. I feel that raising awareness of this condition and educating people on correct swaddling of babies, is vital in preventing years of unnecessary pain and surgeries that could easily be avoided. For people suffering with DDH due to hereditary conditions or for no known cause, it is very important that they realize that they are not alone and can talk to other people who have undergone major surgery, in the pursuit of a more active pain free life.





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Livia’s Story

Livia’s Story

Livia had a normal pregnancy and a normal head-down vaginal birth. Livia’s only risk factors for DDH were first-born and female. Everything was normal in...

Livia had a normal pregnancy and a normal head-down vaginal birth. Livia’s only risk factors for DDH were first-born and female.

Everything was normal in the nursery, however, at her eight-week check-up (in 2000) her pediatrician noticed a “click” in her left hip. This was a Friday. By Tuesday, we had an appointment for an ultrasound with an orthopedic doctor. He told us that her hip was “dislocatable with pressure”, meaning that the hip was in but when you pressed it the right way it would pop out. He recommended a Pavlik harness and assured us that this was a very correctable problem and would like to see her in four weeks. After this appointment I did a web search and found more on hip dysplasia with German shepherds than hip dysplasia with humans. Somehow I stumbled onto the e-group website “Hipbabies” that had been started only four days before. At that time I became the third or fourth member. What a lifesaver!

Four weeks later we returned (it was in 2000 and Livia was now 12 weeks old). She had an x-ray done which showed that the hip was completely out of the socket – the Pavlik hadn’t improved anything. In fact, the hip was worse. This doctor then referred us to a pediatric orthopedic surgeon at the local Children’s Hospital. This was a Tuesday and we had an appointment with Dr. W at the hospital by Friday.

I felt everything was moving too fast, but as I found out later there is a certain time frame where the success of correcting DDH is the highest. Dr. W confirmed that the hip was out of socket and recommended either a closed or open reduction. These are types of surgeries and both involve spica casts. We were scheduled for surgery less than a week later. He explained that he didn’t know which one Livia would need until she was actually under anethesia. When she was completely relaxed he would attempt to place the hip back in the socket without making any incisions. If the hip stayed in then he would just apply the cast (closed reduction). If the hip did not stay in then he would have to make an incision into the hip (open reduction).

Because of scar tissue that had already filled the hip socket, the hip would not stay. Livia had to have the open reduction. An incision was made in her inner thigh and the scar tissue was scraped out. After that, the hip bone fit nicely in the socket and a spica cast was applied.

The spica went from her rib cage to her feet; just her toes were sticking out. Livia had to stay in the hosptial overnight but was doing so well the next day that we were able to go home early. She had the cast on for seven weeks and then we went back to the hospital to have the cast removed and see if the hip was stable (2000). The hip looked good and she didn’t have to have the spica anymore but was moved to a Hewson brace. This was to be on for 24 hours a day for the next six weeks. We were able to take it off for diaper changes and one bath a week. After six weeks (2000) the hip still looked good and the Hewson brace was decreased to 12 hours a day. At the end of the year, 2000 (Livia was 10 months old) the x-ray looked great and we were able to discontinue any sort of brace! Livia is now in follow-up and has to return in April, 2001 for another x-ray as the hip could slip back out. After that, she will continue to have follow-up every year until she is 16 years old.

Update 2001

After an x-ray in 2001, Livia’s hips were pronounced “perfect” by her doctor. She is now on yearly x-ray’s and exams until age 16. In June 2001, a baby brother arrived and after several thorough checks and an ultrasound, his hips appear to be normal.





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Lucy

Lucy

Hi all, I want to thank everyone who has taken the time to write their stories, I have read them all and responded to some...

Hi all, I want to thank everyone who has taken the time to write their stories, I have read them all and responded to some and I’ve found each story an inspiration and helpful to me, and I would like to share my own.

I am 44 years old, and I have always been very active growing up I had no issues, I’ve got four children and had no problems having them, looking back my issues started in my late twenties I was visiting osteopaths for problems with my low back, at £30 an hour I didn’t go too often, but one of the many I visited told me I had issues he couldn’t fix but did not say what only that my hips didn’t have full rotation, fast forward to age 39 I was into my jogging after losing a stone and a half I felt great, but I remember a day when after going for a long walk I had pain in the left side of my groin, this came and went for a few months and then I was getting it daily, I told my mum and she told me I was born with hip dysplasia and that the doctor told her I would be okay because it was mild!! What?!
The shock and upset I felt was enormous, I felt let down not only by the hospital but my mum too, she told me I had a funny walk more like a waddle when I was young, but to me it was normal, I didn’t know any better, I cannot understand why she did not try to get me seen in my childhood and even more so why she never told me about it, I feel a bit distant towards her now because of it, but I hope one day I can put it right.
So anyway I went to my GP and immediately got sent for an xray which diagnosed bilateral hip dysplasia, however it still took 3 orthopedic surgeons, 3 hospitals, steroid injections, physiotherapy and 3 years to get to the point of surgery, in June 2017 I had a left THR and I’m now in the process of hopefully getting my right hip replaced.

It is such a painful condition, standing up and sitting hurts, my muscles are in a permanent state of stiffness and overuse, my si joints are agonising my right foot hurts and I struggle to juggle work and home life, but I keep going because one day I will wake up and have no pain i am hoping the op on my right hip will finally fix me.
In hindsight knowing what I know now I would have had both my hips operated on straight away, because now five years down the line my pelvis and legs are worn out and I have a lot of recovery to go through, I hope by telling my story it helps other readers like me, thank you for reading my journey with hip dysplasia.





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Lynn

Lynn

The night before my 6 month check-up my dad was playing with me and move my legs a bit. My left leg fell in a...

The night before my 6 month check-up my dad was playing with me and move my legs a bit. My left leg fell in a way the should not have been possible, but I just giggled. The next day it was confirmed by the family Dr. that I had DDH of my left hip. From there I spent time in a harness, which did not fix the dysplasia. I had a series of body casts, again these did not set my hip right. Eventually, I went to the hospital for surgery to have metal pins inserted to hold my hip in place. After being declared fixed, at 2 1/2 years old, I would need to take frequent breaks while walking or playing. I would not be able to walk 1.5 blocks to my grandparents house without sitting at least once. My mom said I never complained about pain, only that my hip was “tired”. This led to another surgery to have the metal rods removed. At the end of this surgery, my left hip was about 1.5 cm longer than my right. As I grew this 1.5 cm distance stayed the same, so the doctors grew less concerned.

Starting around the age of 15, I started to feel severe pain in my right hip. We went back to the doctor that had tracked all my follow-up care and were told it was growing pains and it should get better. The pain continued through collage. At times it was fine and other days it would be so severe I couldn’t walk. As I finished collage and was applying to graduate school, pain became more frequent. Over the next several years, I lived in 3 different cities and went to several orthopedic specialist to try and get a solution to the pain in my right hip. Each one read my complaint of right hip pain, took X-Rays and come back into the room with comments on my left hip’s location. I was told that they couldn’t figure out my right hip problem because they couldn’t compare it to my left hip. I was prescribed lots of physical therapy. Each time physical therapy would made the pain worse.

Finally, I was reffed to an orthopedic surgeon who took the time to get and look over my records from when I was a baby and everything after that. Then he did a round of MRIs. His conclusion was that my left hip not being completely in the right place my whole life and the fact that this made my left leg longer had done damage to my right hip. While he couldn’t see anything definitive, he wanted to do surgery on my right hip to try and “clean-up” some things in it. This was about 1 month before I was going to Poland for 5 weeks and 6 months before my wedding. Since there was no guarantee the surgery could be done in time for me to walk down the aisle, I elected to hold off.

At this point, my sister, who is an occupational therapist, suggested neuromuscular therapy. After 10 years of so much pain I would not be able to walk or would cry myself to sleep many days, I decided to give it a try. It only took a couple of sessions before I felt a difference. Not only did the pain start to get better, but my range or motion improved as well. After about 2 months of weekly sessions, I was able to start tapering sessions and eventually went to monthly sessions for maintenance and have now not gone in 4 years. As she worked, I could feel the tightness of the muscles around my hip and began to realize that 25 years of poor hip structure tightened these muscles to allow me to walk and do basic movements. I eventually learned to stretch and massage in specific ways and can mostly keep the pain away. I still have arthritis in both hips and can feel my left hip pop and move in and out of place often. That said, I now know the early signs and when to rest, stretch, etc. In short, I have much more control over the problem.

Almost two years ago, my kids started taekwondo. Although I’ve never been athletic, I saw the things that would do and wanted to learn. So about a year ago my husband and I started too. When I started, I was worried about my hip and if it could take it. The last thing I wanted was to go back to nearly constant pain. Actually, the opposite happened. The combination of stretching for flexibility (particularly in the hips) and the kicks and other movements we learn that build strength, have led to less bad days. In addition I can now almost do the splits and kick above my head. I still avoid excessive jump kicking and anything that makes my hip pop or move in a way that does not feel right, but am able to do most of the moves and have a lot of fun with it.

I’m sure this is not a solution for everyone, but am glad that I went with some non-traditional methods. I often joke that several very intelligent doctors could not fix my problem, but a woman with an art degree (who happened to also be training as a neuromuscular therapist too) did. Someday, I’ll need hip replacements, but I’m going to hold off as long as I can.





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Lynnon’s Story

Lynnon’s Story

Our daughter Lynnon’s hip dysplasia was discovered by her pediatrician during our hospital stay at her birth. The doctor was conducting the routine infant examination...

Our daughter Lynnon’s hip dysplasia was discovered by her pediatrician during our hospital stay at her birth. The doctor was conducting the routine infant examination and mentioned that her left hip was clicking. He said that sometimes breech babies are born with loose hips. Lynnon had been breech for the entire third trimester of my pregnancy. I tried many techniques to try and get her to turn, including ice packs, elevation, and even the external version procedure. She was born by C-Section and it was apparent why she was unable to turn… she was a frank breech. Her feet were literally next to her ears, legs stretched out in a ‘pike’ position, and her bottom down.


Lynnon had an ultrasound done that same afternoon, and it showed that both of her hips were dislocated. I was shocked. I was also extremely worried about her comfort, though I was reassured that she likely felt no pain at all. We received a referral to a pediatric orthopaedist for further consultation on her hips. At 6 days old, we traveled the first of many three hour trips to meet her pediatric orthopaedist. Upon her examination, Lynnon was fitted with the Pavlik Harness. We were told she was to wear it 24 hours a day, though we could remove it for quick baths and to change outfits if needed. The straps on the harness were marked so we knew the correct positioning, and we were shown how to remove the harness without changing the abduction straps. The doctor said the harness had over a 90% success rate for infants, and she would wear it for approximately 12-18 weeks.

I had anticipated this news after doing some research about hip dysplasia. The harness seems terrifying at first. It is an unsightly and unnatural looking contraption. I was dealing with the intense hormonal change of giving birth, and the fact that there was something ‘wrong’ with my precious baby, which intensified the worries. The idea that she couldn’t be a ‘normal’ baby and had to wear this harness seemed devastating at the time. I knew that we were fortunate because there are so many other illnesses and issues that infants deal with, and our situation was relatively minor. I had a dear friend whose baby was born with a heart issue, and had been flown by helicopter in the first weeks of his life to have open heart surgery. I knew I should count my blessings for Lynnon’s overall health, but it was still hard to cope.


I cried the entire three hours for the first trip to see her specialist, and could barely speak to the doctor without sobbing. I was worried sick that the harness was going to hurt her, that we wouldn’t be able to breastfeed, etc. etc. Though I recognized and knew it was incredibly shallow, I found myself being upset that Lynnon couldn’t wear many of the cute outfits she had received as gifts. Pants were out of the question (and it was the middle of winter), and her hips were kept at such a wide angle that the only comfortable and non-bulky clothing for her to wear were onesies. I had been comforted by others who had been through the same treatment that the time goes by so quickly, and we would barely even remember her having to wear the harness. At the time, 12-18 weeks seemed like an eternity and it was hard to believe them.

I would say that the fear and anxiety about the harness wore off within the first week after her fitting. Life in the harness was never as dramatic or devastating as I imagined. Lynnon never complained about the harness. After the first week, we were pro’s when it came to weaving her diaper through the harness, or taking it off and putting it back on quickly for changes or baths. Lynnon was a little ‘bulkier’ than the normal non-harness baby, but we were still able to nurse, cuddle, and play. After a couple weeks, we were even able to make light of the situation and would sing ACDC’s “Back in the Saddle Again” each time the harness had to go back on.

As we got into the weaning stages, I even think that the harness was comforting to Lynnon at times. Putting it back on at night was almost like her way of being swaddled, or being put in a familiar position. The only negative suspicion that I had regarding the harness was that it may have made her a gassier baby, as she was not able to freely kick and move her legs to ‘work out gas’ and aid digestion. But, her gassy period lasted less than three weeks, so it may have simply been her age and immature digestive system, and a stage she would have gone through regardless.


Now, I am so thankful for the harness . In fact, I find myself thinking “I LOVE THE HARNESS!” At Lynnon’s two week follow up, her hips were no longer dislocated. At her five week follow up, her hip angles showed great improvement and she was cleared to be out of the harness for four hours a day. At her eight week follow up, both hip angles measured sixty degrees and we were cleared for twelve hours per day out of the harness. She continued to wear the harness only at night time until she was 14 weeks old, when we were officially cleared. The effectiveness of such a simple device at correcting her hips has been fascinating. We are so thankful that we have been able to avoid more invasive treatment such as surgery and a cast. Lynnon will continue to have follow-up visits with her hip doctor until she is five years old, and we have been encouraged by other success stories to believe that she will be an unrestricted, un-phased, and un-stoppable child.





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M-J

M-J

I am a student physiotherapist in the UK, and I have bilateral hip dysplasia and have had recent surgeries. My left hip was diagnosed and...

I am a student physiotherapist in the UK, and I have bilateral hip dysplasia and have had recent surgeries. My left hip was diagnosed and treated as a newborn and ‘re-diagnosed’ at age 26 after some years of experiencing symptoms in my hip. It took a number of years after that and a lot of to-ing and fro-ing for me to find someone experienced enough to then correctly diagnose my right hip also (at age 31) and be able to treat them both. My journey involved many health professionals and sadly much conflicting information, I got the impression that there is not very much awareness or understanding of adult hip dysplasia amongst health professionals.

I had been treated as a newborn for a ‘clicky hip’ and my mum had been told that it was then resolved, so when I started experiencing symptoms in my early 20s I didn’t put 2 and 2 together. When I was eventually diagnosed I didn’t even know that this was called hip dysplasia! I thought nothing of it to begin with because my symptoms were so mild at first, I only felt pain when I was doing sport, so I just stopped doing sport for a while. I found it very difficult to find a consultant who could explain what was going on with my hips and offer me surgery to treat it.

I’ve now had pelvic osteotomies on both hips and I am in the later stages of recovery. It has been an emotional rollercoaster going through these big surgeries and doing the rehab for such a long time, but I believe it has been worth it. I’m glad I was able to have the surgeries so that I can delay having a hip replacement until later in life. I am able to walk more and more now.

My experiences doing so much rehab gave me the idea to change career into physiotherapy, and although I had to take time off for surgeries part way through, I am now in my final year and will soon be a qualified physiotherapist! I really hope to use my experiences as a patient to influence healthcare and raise awareness of this condition in adults.





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Maddie

Maddie

My journey with Hip Dysplasia started in August 2017. It was softball season and everytime I ran my right hip would be throbbing with pain....

My journey with Hip Dysplasia started in August 2017. It was softball season and everytime I ran my right hip would be throbbing with pain. Also whenever I would sit down or stand up my hips would pop. I tried ice and heat to make the pain go away. My mom took me to my primary doctor and she didn’t know what was wrong. I was given a paper with orthopedic specialists in my area. I went to the specialist and she said that ligaments were just hooking onto my femur bone and physical therapy would solve the issue. About 4 weeks go by and the pain wasn’t going away. I was referred to another physician who knew more about the hip and could figure out why I was in so much pain. I had an MRI with contrast done and there it was. A torn labrum. That’s when I was told that I had hip dysplasia. I was so in shock that it was worse than I thought it would be. Then I was told about the PAO surgery. I now went to go see another orthopedic physician who specialized in hip dysplasia. He said that a PAO would help me from having to get a hip replacement for a long time. On February 23, 2018 I had a PAO and labrum repair surgery.

I stayed the weekend in the hospital. The first time standing up out of bed is the worst part of it all. The first week was rough but by the 2nd week I was off the pain meds and starting to do more things on my own.

At my 1 month post op appointment with the orthopedic specialist who said that I was healing fast and I could get wean off the crutches and it would take about 2-3 weeks! I am now about to 6 weeks post op.


I forgot to add that I joined the PAO support group on facebook and asked questions and feedback from people who have had the surgery! Joining a support group on social media or following blogs is a great way to find out more information from people going through hip dysplasia too!





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Maddison’s Story

Maddison’s Story

My daughter was born on 19th January 2013, during her routine check up they informed me she had ‘clicky hips’ and a Physio will fit...

My daughter was born on 19th January 2013, during her routine check up they informed me she had ‘clicky hips’ and a Physio will fit a pavlik harness on her and we were to wait for an appointment for a scan and to see a consultant. The harness didn’t seem to bother Maddison, it seemed to bother me more, we had no straight answers and were told we have to wait until she has her scan. At first we would take it off to change her and bath her, 4 weeks later we finally had our appointment.

The scan showed that her left leg was at 45 degrees and her right was at 35 degrees. The consultant informed us that Maddison was to stay in the harness 24/7 this is when I broke down. We had to learn to put her vests and change her nappy without taking the harness off, she couldn’t have a bath so we had to wipe around and under the harness and Maddison hates being fussed with and dressed so this was a distressing time for her and me.

We were due to go back for a scan 4 weeks later where there had been progress so Maddison was allowed out for baths. That night was bath night and it was great seeing her kick about in the water. Four weeks later we returned and again Maddison’s hips were progressing this time we were allowed to take the harness off for 1 hour a day for her to have a kick about we were hopeful that the next time we would have an appointment it would be off all day but 4 weeks later we were told that her left hip is at 60 degrees which is where it should be but her right hip is slowing down but it’s improving as she is allowed out of the harness for a few hours a day now. Maddison is now 20 weeks and we go back soon to see how her right hip is progressing. Fingered crossed for our next appointment, we are very lucky that the harness doesn’t seem to bother her, she always smiling and happy.





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Madison’s Story

Madison’s Story

After Madison was born, she was checked out by a doctor who noticed that her hips clicked. He explained what this was and we learned...

After Madison was born, she was checked out by a doctor who noticed that her hips clicked. He explained what this was and we learned that it was similar to what our dog had. We made an appointment for Madison to have an ultrasound at a children’s hospital the following week. When we arrived home from the hospital, we searched the Internet and found out all we could about hip dysplasia.

After visiting our Pediatrician we were referred to a doctor at a children’s Hospital. We learned that our doctor was a well-known orthopedic doctor. The following week, we had our first of many visits with our doctor. He put Madison in a Pavlik Harness, which was supposed to keep her hips in the proper position.

The next few visits to the doctor were hard. Madison would get mad during the ultrasound and kick her hip out of socket. After seven weeks our doctor decided that the harness was not working and said we will wait one month until Madison turns 3 months and then put her in a cast. We were scared. We felt that we were worrying enough, so we decided not to tell our families until after our next visit.

My husband and I spent the next month getting used to Madison being out of the harness and doing all the things with her that they could not do before. At the next visit the doctor gave us wonderful news, Madison’s hip was getting better on it’s own! We were so happy we had a 4th of July party to celebrate!

We still visit our doctor to make sure the hip is growing properly. Despite all that Madison went through, she was not slowed down. Two days after the harness was taken off Madison started to roll to her side.





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Maggie-April’s Story

Maggie-April’s Story

Hi my name is Maggie-April and I was born with severe bilateral hip dysplasia (DDH). I was born and a few days later I was...

Hi my name is Maggie-April and I was born with severe bilateral hip dysplasia (DDH). I was born and a few days later I was adopted but with no awareness of what was to come. I was a totally normal smiling, laughing and happy baby for a year until I started walking. I had a limp and a roll to my walk. My mom brought me to the doctor numerous times but they kept saying that the reason that I had a limp was cause I just started walking. When I was two my mom ordered the doctors to refer me to a pediatrician. My doctor said that they would take an x-ray then see if anything was wrong…That night the doctor called and was clearly shaken, she sent my family and I strait to the Children’s Hospital.

My continuous journey started when the doctors at the Children’s hospital diagnosed me with severe bilateral hip dysplasia. They explained what DDH was and that my x-ray and CT scan showed that I had almost no hips at all. That day the doctors and nurses scheduled me for first surgery that would be in a couple of months.

Between the age of two and five I had had five surgeries and about six different Spica Casts for months at a time.

At the age of five I was all fixed and could do anything I wanted. I went back for check-ups every year.

At one of my regular check-ups when I was ten they sent me to get an MRI. My parents knew something was wrong but kept it to themselves. After looking at my MRI my doctors decided that my left hip was slowly dislocating and they would have to fix it with more surgery. I underwent 3 more surgery which included a HUGE Spica cast and very annoying leg difference. My sixth surgery left me with a leg difference of four centimeters. I had to wear a lift on the bottom of my shoe, the lift attract lots of questions and bullies. The lift also limited me only two pairs of shoes over a year and a bit.

I was all done with surgeries, or so we thought until this last April where I underwent my 9th surgery on my right leg. I am still recovering, but am happy that they did this surgery. This surgery has made life easier by fixing the leg difference, they took four centimeters out of my right hip. I now have 5 pairs of shoes and am excited to recover to the fullest!

In my future I will have one surgery next year and hip replacements in my thirties but, I like to live life in the moment and not worry about the future!

I am currently 13 years old and have overcome nine surgeries on my hips. I am very active and love to play all kinds of sports, nothing can stop me and my hips!





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Malia

Malia

Malia was diagnosed with hip dysplasia and placed in a Pavlic harness one day after she was born. Luckily we had a good pediatric resident...

Malia was diagnosed with hip dysplasia and placed in a Pavlic harness one day after she was born. Luckily we had a good pediatric resident who picked up on the hip clicks and we saw the pediatric orthopedist before we even took her home! She was my first born, and come to find out I had a family history of hip dysplasia.
The Pavlic harness didn’t work to correct her bilateral hip dysplasia, so at 10 months old she had a closed reduction and spica cast applied. The hardest thing I had to do as a mother was watch her be carried off to the operating room. Luckily, she had been given a sedative and was drowsy so the hand off for her was not scary at all. She came out of surgery with no complications. We learned all we could from the web about spica care and management.

I even scored a free spica chair from an online support group! Malia was a trooper, kids are so adaptable. She only fussed for maybe the first 48 hours after surgery, after that she was happy as could be. I took her everywhere, except the pool. Luckily the surgery was in November so she didn’t miss out on water activities. Diaper changing was a challenge initially, but with some great tips from videos I found through this website we got the hang of it. 12 weeks later the cast came off and she went into a rhino brace. She was in the brace initially full time then ‘weaned’ out of it over another 10-12 weeks. At this point Malia was 16 months old. She started crawling, we never got to that point initially because she was always in a brace, but didn’t take her first steps until she was 26 months old. Boy was that a celebration day!
Her next orthopedic appointment after she had started walking went well, we were told her hips looked good. One year later at the next ortho appointment we were told her right hip is subluxed again. I was devastated. Now she needed more intense intervention, a PAO surgery where they cut and reshape her acetabulum. Here we go again, this time I had found a book, Hope the Hippo, for Malia to understand what was going to happen. It was great, I highly recommend it to any parent with toddlers who are going through this. We had the surgery, dealt with the spica cast this time in the summertime. Once again, Malia did great!
We are now two years post PAO and so far so good! She will be followed through puberty to make sure everything develops properly. It has been a long journey, she still is a bit behind with gross motor skills, but happy and healthy!





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Mariam

Mariam

Hi. I was diagnosed with hip dysplasia since i was born. Im 22 years old and im from Georgia (country). Me and mostly my parents...

Hi. I was diagnosed with hip dysplasia since i was born. Im 22 years old and im from Georgia (country). Me and mostly my parents where dealing with that my whole life. When i was born nobody knew that i had dysplasia till my grandma noticed. she knew it because my cousin was born with same diagnose. I started walking pretty soon so she noticed that something was wrong with my hips. My both thighbones were not in the hipbone sockets. So doctor’s suggested surgery but my parents didn’t wanted. my cousins had surgery and now she has pain when she grew up. they decided to fix it with massages and fixtures.

I wasn’t able to run or playing sports till 4 years. I don’t remember that i was struggling because of that. because i had lots of toys and they carried my outside on hands. so it wasn’t that bad. after those years my both feet were great. Like nothing happened. Doctors suggested not to have really crazy life like no jumping but i was little and i didn’t cared about it. and after 14 years my left thighbone came out again. I didn’t knew that it happened. i just had pains and i was hiding it from my parents. i didn’t knew that it was something bad. It was getting harder and harder to walk some long distances. and i was walking like duck. so they noticed my crazy walking and i told them and when they took x ray it showed that my left side wasn’t ok. but my right tight is totally fine.
I had two surgeries. Firs they sticked some nails in my hips (surgery was 7 hours long) I was supposed to stay in bed for 3 months in one pose and don’t move. In one year they took out those metal things and i started to learn how to walk again. My left feet is shorter now and i walk way worse than duck but it doesn’t hurt me anymore. Im learning how to walk better and i have some special lifter in my shoe. It not that bad actually.

My parents made great decision when they say no to the surgery for the beginning because my right leg is totally fine and its helping me. I never had complexes about that (even when one of my classmates was laughing at my walking) still lots of people likes my and i have lots of friends. and its great way to start conversation haha.

One thing that im sorry about that my parents had some hard times. they were nervous about of me and they had some hard times with money because of massages surgeries and rehabilitation. Im so thankful and it helped me to appreciate my parents way more. They are best parents i could get. They are one and only reason that i didn’t had really hard times with my hip dysplasia. And that im really successful woman with great job, great friends and great boyfriend. they did best job. I hope i will pay them back. P.s sorry for my English.





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Marie’s Story

Marie’s Story

I was 14 when I was first diagnosed with Hip Dysplasia. The year was 2007. At the age of 14 I was a national level...

I was 14 when I was first diagnosed with Hip Dysplasia. The year was 2007.

At the age of 14 I was a national level gymnast. I know I always happened to have hips that were more flexible than most, but I did not think anything of it.

I had a bad fall in gymnastics on April 26th 2006 and I will never forget that day. I fell from the trampoline and the fall was not a really bad one I just landed very awkwardly on my leg. My coach and my mother realized something was terribly wrong when I hesitated to get up. ( I am one to get right up after a fall)

At that moment I still did not know what was awaiting me as I half lay/sat there for a moment. Finally I told myself “ok Marie now stand up”. I felt the most incredibly life altering pain that I have ever felt in my life. My hip seem not able to bear my weight and it was so painful.

I was rushed to the emergency room. When I got there they gave me an injectable medication in my hip to reduce the pain. The X-ray did not show anything. I probably tore a muscle and so I was given crutches and sent home.

I was in crutches for 2 months. I kept complaining about having pain.It was very real to me that being but everyone around me seem to think I was seeking attention, as the doctors could not find anything wrong.

I remember feeling dismissed and so alone. My coach was displeased with me because I would go to training and could not perform to what was expected. My parents were concerned but at the same time were being told by the so called professionals that I was fine. It was a very long heartbreaking 3 months for me.

On my next checkup with the doc I told him “no one believes me you have put everyone against me and I am only 14 if you really care please help me I am in a lot of pain”. The doc then told my mom that he would schedule an MRI and in the meantime, I would start intensive physiotherapy.

My physiotherapist was the most amazing and compassionate woman I had ever met. She really helped me. I told her about the events leading up to my physiotherapy as well as what felt good and what didn’t. She asked me what does the pain feel like or what it remind me of. I explained that sometimes I would sit and cross my legs and I would feel a crack and a jolt of pain would go through my hip. The pain would linger there for awhile after it happened and for the most part the pain was dull and achy.

She said “at the top of your head tell me exactly what hurts and really listen to your body”. I said “Dominique my bones hurt”.

She said that for someone who had never broken a bone in their life to be able to say that your bones hurt that there must be a serious issue.

I got the results of the MRI and the physiotherapist met my parents and I to see the orthopaedic surgeon. We saw (all in the same hospital) the doc and he said that the results were negative, everything looked fine. My physiotherapist pushed for him to do something more and told him what I had told her. We were referred to an adult specialist. All the while, still in intensive physiotherapy.

Finally on March 11th 2007 we saw the specialist. He asked what were my complaints and I told him. He pulled up the X-ray and looked at them (the same one everyone else has been looking at) and said it looks like you have major issues. My mother,Marie, of course started to panic.

He looked at the MRI and turned to me. “You must be an amazing athlete and have great pain tolerance because most people, if they were in your situation, would hardly be able to walk” he said.

He explained that he never performed this type of extensive surgery on someone my age. The particular problems were pertinent to my hip dysplasia and the additional damage due to overuse and my fall in 2006.

He said that I would need surgery; Pelvic Osteotomy and hip Arthroplasty on my left side. He said we would leave the right hip alone as it was not bad and in the future if I ever had deterioration of the cartilage on the right side we would do a Arthroscopy.

On July 17th 2007 (my birthday), the phone rang and I assumed it may be more birthday wishes. My dad was at a meeting and my mom was at to the grocery store. It was no birthday wish. It was the hospital calling  to tell me that the doctor was ready to perform surgery on my hip and that I would have a pre op on August 15 and the surgery on the 21st. She ended the call with a “happy birthday”. Mom walked in shortly after and asked why I looked like I just saw a ghost. I explained to her the situation and she said it would be ok, we would get through it together.

As scheduled we went in for the pre op and a few days later got the surgery. I was given a epidural on top of all the other things they gave me to ensure that I had good pain management afterward. I was in the hospital for 16 days and on crutches for 4 months. I learned I take my first steps with my physiotherapist Dominique.

It was a long and painful recovery and after many tears shed, and a scar of 29.6 cm, I am doing great. Plus I now have 3 pins in my hip. I was not able to go back into gymnastics at the same level but it does not stop me from still participating.

The pain is gone but some days, depending on the weather and how much exercise I’ve done, I need to rest as my hip gets very sore.

Anyhow, all this my story and I am happy I have shared it.

Sincerely

Marie

(Ontario, Canada)





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Mary

Mary

At 20 years old, I suddenly began experiencing hip pain and had no idea why. Then I found out I was in a Pavlik harness...

At 20 years old, I suddenly began experiencing hip pain and had no idea why. Then I found out I was in a Pavlik harness as an infant, but my hip dysplasia was not corrected. My journey began with doctors telling me that I would eventually need hip replacements, and to avoid any high impact activity, but nothing could be done in the meantime. Ten years later I found a hip specialist who told me about the periacetabular osteotomy procedure, and where to find a surgeon who could do it. I had to travel 6 hours to this surgeon, and I felt like I was alone in this journey – seeking a specialized surgery that was performed by so few surgeons throughout the country.

After my PAO and recovery, I started a group on Facebook specifically for PAO patients. I didn’t really expect much from it, and to my surprise it has grown to an incredible, supportive community of over 5,000 people so far. I wish that such a community had been around when I began my journey, but I am thankful that these patients, parents and advocates are able to support and learn from each other now. We are all in this together!

As I learned more about hip dysplasia, I discovered the importance of early screening, especially if there is a family history. I pushed to have my son screened, and even had to go directly to a pediatric hip specialist after the pediatrician said he did not need any further screening. He was found to have bilateral hip dysplasia at 5 months old, and he was in a hip abduction brace for several months. During that time I also researched and learned a lot about baby carriers, and found that a wrap (although somewhat difficult to learn to use initially) worked best for me while he was in an abduction brace. We returned to this specialist every year for followup x-rays until he was cleared. Although I was screened and was in a brace as an infant as well, the followups and continued monitoring were missing from my equation, and I do wonder how my journey could have been different if that had happened for me.

Through continuing education and advocacy, my hope is that fewer adults will have undiagnosed hip dysplasia and need major corrective surgeries. I am grateful for everyone who shares their stories and works to spread knowledge about this issue!





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Mary

Mary

My daughter was diagnosed with DDH right after she turned 1. She was born full term 9 pounds and my pregnancy/delivery was a breeze. At...

My daughter was diagnosed with DDH right after she turned 1. She was born full term 9 pounds and my pregnancy/delivery was a breeze. At her 3 month check up we found out her head was above average in size , after being seen by a specialist we were faced with hydrocephalus (fluid over brain) which cause Macrocephaly (misshapen head) ……and that brought us to a development delay !! She was placed in physical therapy and occupational therapy for several months and slowly met all her goals.

Her greatest challenge was walking she started to walk finally when she turned 13 months only to find we had a limp. After being sent to a orthopedic we found our problem and was told the options, we all want what’s best for our children so I chose to have it corrected while she’s still young for a better quality of life in the future. Only 1 month after she started walking she was set asleep for an 6 hour open reduction and placed in a hip spica for 3 months.

At first I cried almost everyday it broke my heart to see her so miserable but after about a month she and I got use to it being there (I was shocked) so in case your wondering it’s not that bad it just takes getting use to the only advice I can give is lots of TLC and clothing wise shirts a few sizes too big and leggings about the same …..but anyways after being took out of the cast 3 months later she walked within 4 days her doctor and I were blown away.

A month after the cast was gone we had an appointment for an X-ray only to find that hip was trying to dislocate again so after another long discussion her doctor has decided a second surgery will do the trick ,without question we take his advice because we trust the doctor and he is the best and everything you want in a doctor and I’d never let anyone else see her for this . We go back in a few days to get our next surgery date so please keep us in prayer. There’s nothing God can’t do !!





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Megan

Megan

I was always an active kid. I loved softball and always dreamed of pursuing it in high school and eventually college. But when I was...

I was always an active kid. I loved softball and always dreamed of pursuing it in high school and eventually college. But when I was about 12 years old I started having hip pain and clicking in both of my hips. After two years, and at the age of 14, I was diagnosed with torn labrums and impingement in both hips. I underwent my first arthroscopic procedure on my right hip in April of 2014. That surgery was a success for sure. Because of the success of the surgery on my right hip, we decided to go forward with the arthroscopic procedure on my left hip. Once the surgery started the surgeon determined I didn’t have a torn labrum and justhe cleaned out my joint and shaved off the extra bone (impingement.) So I was recovering well until one day I bent down to pick up a little dog and my hip dislocated. I was rushed to the E.R. where they popped it back in place. We were told that everything should heal and that it shouldn’t pop out again. After that first dislocation my hip never felt the same. It always felt as though it was going to pop out again and eventually it did. So I was once again rushed to the E.R. where they popped it back in. So I ended up getting another surgery but this time it was pretty major. I now have a 6 inch scar. Even though I had my surgery in October of last year, my left hip has still felt unstable or like it’s going to pop out. So we got a second opinion and I was diagnosed with hip dysplasia on the left side. The angle that they take is normally in the mid 20’s. My angle was 12 degrees. Does anyone know if that will require the PAO surgery? Is anyone willing to share their experience with the PAO surgery? Is it worth it? How have you felt since?





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Megan

Megan

Hello everyone, my name is Megan and this is my hip dysplasia journey so far! Having everything taken away from you at a young age...

Hello everyone, my name is Megan and this is my hip dysplasia journey so far!

Having everything taken away from you at a young age is heartbreaking. I started having hip pain around the age of 12 and it’s as if my whole life was put on hold. I had to quit softball and could hardly run the mile in middle school. We went to a few doctors who said I had growing pains and if the pain persisted for a few more years, then I should come back. Years? My pain gradually got worse and eventually, it got to the point where I could no longer run anymore and even had a hard time walking.

When I was 14 years old I was diagnosed with a torn labrum and impingement in both hips. It was frustrating but at the same time, it was a relief. I had an answer to my pain and there was a simple plan to fix my hips, or so we thought. I had my first surgery at age 14, as a freshman in high school. It was arthroscopic, in other words, less invasive than an open surgery. I was fully recovered within a year but unfortunately started having pain in the other hip.

We went back to the doctor who recommended another arthroscopic surgery. We were pleased with the results of my right hip and went ahead with surgery on the left hip when I was 15, now a sophomore in high school. Recovery went well and I thought I was back to 100%. Little did I know the things that would happen next.

A few months after the arthroscopic surgery on my left hip, my hip fully dislocated. I was rushed by ambulance to a local hospital where I was told my hip had anteriorly dislocated and that it needed to be popped back in place. After this was done, we looked for answers. Why had my hip dislocated in the first place? It was the most traumatic experience ever and the pain was indescribable. We went back to my scope surgeon who reassured us that I was fine and that it wouldn’t happen again. A few months later, after a lot of physical therapy, my hip dislocated again. I was so upset and frustrated. Again? I needed answers.

We researched what could be causing my dislocations and came across hip dysplasia. In the meantime, I had an open surgical dislocation surgery with the scope surgeon where he fixed all the damage that the dislocations had caused. I had many torn ligaments, muscles, and a fracture.

After months of rehab from the open surgical dislocation surgery, I knew something still wasn’t right with my hip. It felt unstable. We pursued the hip dysplasia diagnosis with other doctors and I was eventually diagnosed. I then had to make the decision whether or not to have the PAO. I wanted my life back and so I underwent my PAO in May of 2016. I am by no means 100% pain-free, but my hip is stable and that is huge. I am forever grateful for the stories on this site, you guys helped me tremendously.

There are gaps in my story but that is okay. I did physical therapy for years and tried injections, anything to avoid more surgery. Sometimes though, sacrifices have to be made in order for things to fully work out in the end. Good luck to everyone on this crazy journey, it does get better!!!





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Megan’s Story

Megan’s Story

When we went for Megan’s 9 month well baby check up, we were shocked to hear that her pediatrician wanted us to see an orthopedic...

When we went for Megan’s 9 month well baby check up, we were shocked to hear that her pediatrician wanted us to see an orthopedic surgeon. He pointed out her leg length discrepancy, skin folds that were not symmetrical and he could feel that her hip was not where it was supposed to be. I normally take Megan by myself, but this visit, I had my mother with me and I was grateful that she was there. My sister was diagnosed with bilateral DDH at three years old in 1964 so my Mom had some idea of what I was feeling. Our second thoughts were about the problems my sister had and is still having with her hips. She has been through two hip replacements and she is only 42. I did not want this to happen to my daughter.

Two weeks later we saw an orthopedic surgeon who, thankfully, knew he was not qualified to treat a baby and sent us to a pediatric ortho. We met with him and after a few more x-rays it was decided that Megan would have an opened reduction. When the surgery day finally arrived, Megan was 11.5 months old. We were very nervous, especially me. Megan was cruising along the furniture in the waiting room and I kept thinking about my poor baby being in a spica cast for 6 weeks. After they took her away, we took a walk and tried to eat something. After only an hour and a half, her surgeon came out to tell us that the good news was that he only needed to do a closed reduction. Her hip had gone right into place under anesthesia. The bad news was that she would be in the spica for 12 weeks with one cast change. We stayed one night in the hospital and Megan only had two doses of pain meds while we were there. She was wonderful!

When we got home, we put her down for a nap. When we got her up we were surprised to see that Megan had flipped herself over onto her stomach. Her cast only went to her knee on her right leg and she was already starting to learn how to use it. By day four she was pushing herself backwards and within two weeks she was pulling herself around. She ended up learning how to cruise the furniture and a week before the cast came off for good, she was climbing the stairs!

We were very excited to learn the she would be getting the cast off after 10 weeks instead of 12. She screamed the whole time the cast was being cut off because of the noise. (To this day she does not like loud noises.) Her right leg had sores on it, her left leg had no muscle tone and had layers of dry skin. I immediately gave her a sponge bath. It felt wonderful to hug a squishy baby again. We then went to get her Rhino Cruiser brace which she began wearing 23 hours a day. It took a while for her left leg to gain back strength, but before we knew it, she was learning to walk, with her brace. After 6 weeks in her brace her index had gone down, so her doctor reduced her time to 20 hours. After another 6 weeks her index was at 29 and she then only had to wear the brace when she was sleeping. Her next x-ray, three months later, showed that her hip was staying in place, but her socket was still shallow. Her doctor decided to keep her in the brace, sleeping only, and the next x-ray was to be in six months with one check up at three months. It was a long six months, but on Sept. 30, 2002, 16 months after the closed reduction, her hips were pronounced normal. Both of her indexes were measuring at 20. As I was looking at the x-ray, I actually had to think about which side was the bad side because each side looked the same. It was the most wonderful news! Megan goes back for another x-ray when she turns three. Right now, it looks like there will not be any further treatment. We are keeping our fingers crossed.

June 30, 2003 – Megan went for her three year x-ray. As we were waiting, it was so nerve racking. I kept thinking about what we would do if the x-rays did not turn out well. Her doctor came in with the x-rays saying “We have great news.” Her right index was 14 and her left was 17! We go back in a year for her next x-ray. It was such a relief to see her hips looking so good. I asked the doctor to let me see all of her x-rays since April 2001. I took pictures of them so I have a record of her progress and added them to her picture site. It was amazing to look back at the progress she has made in the past 2+ years. Her hips are looking normal! Yeah!





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Meghan’s Story

Meghan’s Story

Meghan was diagnosed with Developmental Dysplasia of the Hip within moments of birth. She had the problem in both hips – the left less severe...

Meghan was diagnosed with Developmental Dysplasia of the Hip within moments of birth. She had the problem in both hips – the left less severe (described as a click) and the right worse (described as a clunk). She was first born, female and breech (three of four higher risk factors). She was frank breech for the last 3 months of pregnancy and delivered by c-section at 39 weeks. We brought her home from the hospital in a Pavlik harness and the doctor gave us 90% success rate.

After a few weeks, Meghan stopped moving her right leg and the harness was removed for 2 weeks until she started again. This went back and forth for a couple of months until the Ortho said it was time to move to the next procedure. The left hip was fixed but the right one was still completely dislocated. A hip spica cast was applied when she was 4 mos. old and she wore it for 10 weeks with a change at 5 weeks. Again, Doc gave us 90% success rate.

Unfortunately, closed reduction failed and she underwent open reduction at around 9 months. It was discovered that there was no abnormality in her hip structure but the socket had filled with fatty tissue and had to be cleaned out. After three days in the hospital, we went home with a new spica and a success rate of 95%! The Ortho was very positive that this would work – his words were that there was no reason for it to fail.

Five weeks later, we went back to the hospital for what we thought was a routine cast change only to find that the hip was still dislocated. We were devasted.

Since Meghan had spent 4 out of 10 months in a spica or harness and could not even crawl, our Ortho wanted to postpone further treatment until she was 1 1/2 years old and potentially walking. Our last hope of repairing the problem is with a procedure called Femoral Osteotomy.

Meghan’s osteotomy lasted 3.5 hours but did not require a blood transfusion (as originally anticipated). Her thigh bone was cut completely in half and the top part (with the ball) was rotated until there was a good fit into the socket. They took a slice from the bone and put it at the top of the socket – this stimulates growth and helps to prevent the ball from slipping out of place. They then reattached the femur (with a pin inside/plate & screws outside) so that the leg was pointed correctly. There was an approx. 5″ incision made across her hip and another approx. 6″ down her thigh. The doctor said everything looked good but he seemed somewhat reserved considering our past failures. Meghan was in severe pain for 2 days and was having some breathing problems from putting a tube in her throat during surgery. It was really tough to see her suffering so much. Within 2 days, she started drinking on her own so they removed the catheter and later the IV. The next day she was acting like her old self again although she didn’t have an appetite. She continued to take pain medication for 1 week.

This cast was shaped different than before and car seats were not an option so we were loaned a funny looking harness from Easter Seals. It straps the child flat on the seat laying down. Since transporting her was so difficult and the cast was so awkward, we elected not to put her back in daycare until after the cast came off. My hubby and I alternated time off from work for the next six weeks to care for her.

Meghan had her cast changed after 4 weeks and was put back in a cast for three more weeks (vs. the expected two). The new cast was significantly different – only her right leg was casted with a 4″ ring of cast around her hips. Her left leg was completely exposed and there was no stabilization bar. It really presented a challenge since all of our gear was designed for the hip spica.

After 3 more weeks, Meghan had her cast removed and everything looked great! The doc said the hip was in place and he saw some normal development/improvement since the last x-ray.

Two weeks later, Meghan went back for more x-rays and was fitted for a brace which she had to wear at night only. The brace was two velcro cuffs with a bar between them and it looked a little like the Pavlik harness. She wore this at night for two months.

At Meghan’s six months checkup post fem. osteotomy she was been deemed “fixed”. She’ll have to be monitored until puberty and still has a plate to be removed but the prognosis is great and we don’t have to see the doctor for a whole year! Her leg is still turned out a bit and slightly shorter than the other but she runs and plays like every other kid her age. The angle and leg length discrepancies will improve with time and should be gone in around 2 years. Each day her mobility and gait improve – most people don’t even notice her hip now. Right now, we’re not even facing therapy and no current prospects of surgery.

2002 Update:

Meghan had the surgery to remove her hardware. She was taken back for surgery at 8:45am and we were on the way home by 1:45pm. She was heavily medicated that day but was on ibuprofen only by the next morning. The only problem we had was trying to keep her calm. Meghan’s doc said that we had to be extremely careful for the first 10 days (especially in the first 4). We were supposed to keep Meghan as calm as possible with no running or jumping. He said that he didn’t think a cast was necessary and normal activity was okay. His biggest concern was jumping — he said a jolt to the leg could cause a fracture but that within 10 days the holes would heal enough that we wouldn’t need to worry. We weren’t able to keep her calm since she wasn’t in any pain but luckily nothing happened. We went for her post op and her x-rays showed that all the screw holes in the bone were filled in and weren’t visible at all.

2003 update:

Meghan went for her annual check up: 2 years post femoral osteotomy and 1 year post hardware removal. She had a standing x-ray, physical exam and was observed walking and climbing stairs. On all counts, the news was great. Her doctor was pleased that her leg angle is almost normal, indexes are completely normal and leg length discrepancy has decreased (although its still around ½ to ¾”). We were surprised at how different her right hip (the problem one) looks from her left but the doc and intern said it looked great. Her doctor said that it will take years for the hip to look normal on x-ray but that she was progressing beautifully. At this point, he does not foresee any necessary treatment in the future but will continue to monitor her with annual checkups until at least 8 – 10 years old.

What we thought would take 8 weeks to fix ended up taking several years and multiple surgeries but we are finally there. Meghan’s was the most difficult case her doc had seen in 20 years of practice but even her problem was able to be corrected and she’s now a normal, happy little girl.

2005 update:

It’s been 4 years since Meghan had a femoral osteotomy. She’s been monitored every 3 – 6 months since then, mostly uneventfully. We were always told that the ball of the femur didn’t sit perfectly in the socket but that it was good enough. We started seeing Dr. A around 2 years ago when her original doc and only surgeon (Dr. N) retired and we got what we thought was a false scare. The doc said that the coverage was getting worse but it turned out that the xray wasn’t taken right (we found out several months later).

At her check up 6 mos. ago, the doc said the same thing — not great but good enough and no further surgery appeared to be needed. When we came back 6 mos. later, we got the news that the coverage was getting worse and if we did nothing, the prognosis wasn’t good (arthritis in her teens and hip replacement early twenties). Dr. A was recommending a pelvic osteotomy before she turns 8. We were devastated as Meghan appears to be fine (no limp, runs a lot, no pain) but were holding out hope that the doc was wrong. I started researching docs in Wash., DC for another opinion but took her to a new doc (Dr. K) here in Richmond, VA in the meantime. After a thorough exam and several xrays, his diagnosis & prognosis were the same but he recommended a femoral osteotomy instead. He committed to send Meghan’s xrays to San Diego for another opinion. He did consult with doctors in San Antonio and doctors at Dupont (one of the other places we were considering taking her). He said that they all unanimously agreed that:

  • pelvic osteotomy would most likely cause more harm than good by making the hip stiff (a pelvic is what the first doc recommended)
  • if anything should be done, it should be a repeated femoral osteotomy
  • before we do anything, Meghan should have an arthrogram to better determine how badly the femoral head is seated and if surgery is necessary or would even help

When I told him we scheduled a consult with Dr. B at a Children’s Hospital in DC, he encouraged me to go to that appt. first (before the Arthrogram). He said if I didn’t hear the same thing from there, I should continue with consultations until I felt comfortable with what I’m hearing. Even though the Arthrogram isn’t that invasive (dye injected into the hip than xrayed), Meghan would have to have anesthesia and she’s considered high risk so he wanted me to be sure. So far, I like Dr. K’s approach and the attention he’s giving Meghan’s case so at least I’ve found a new local doc. Unfortunately, the news from Dr. B wasn’t good either.

Even though not recommending surgery isn’t necessarily a good thing since the long term prognosis doesn’t change, I’d much rather make that decision than to put her through anything else that may not work. We aren’t really any better off than we were before but I’m at least starting to get the info. we need to make a decision.

I have told her current doc that I will not make a decision on further treatment for at least 6 months. I need to see another xray that shows the hip getting worse before I believe that it really is. He agreed with this approach.

We are very reluctant to approve any more procedures unless we can be convinced that something will work without doing more harm. All of the docs that have seen her agree that it may be too late and it’s a very frustrating guessing game at this point.

Another 2005 update

It’s been six months since surgery was recommend and Meghan’s xray showed no change or possibly a little better. With Dr. K’s agreement, we decided we would not pursue further surgery unless the hip degraded or Meghan started developing stiffness or pain. We were finally in agreement that no action was preferred since the surgery could make things worse (and put Meghan through trauma that might not even help). The plan was to monitor her every 6 months for changes.

2007 update

Since our decision (against most medical advice) not to pursue surgery. Meghan’s xrays have been the same or possible a slight bit better.

That news finally changed with her recent visit. The hip position is possibly a little better but the ball of the femur is now rounding out to fit better in the socket. Her doctor is so confident that we made the right decision and she looks good enough, we have finally graduated to annual visits!

I know things could change in the future but it is very gratifying to know we made the right decision 2 years ago, even if it was against 5 doctor’s advice.

Meghan is almost 9 now and is a smart, active, rambunctious child. She just finished a Tae Kwon Do class so I don’t believe she seems to be limited by much. We know there will be somethings in life she can’t do (track) but for now, she’s a pain-free happy little girl with two very happy parents!

2014 update

Meghan has started experiencing pain in her hip which is preventing her from being active in physical education in school.  She had an Arthrogram and MRI performed here but because we have exceeded Dr. K in Richmond’s expertise, I took her to Boston’s Children’s Hospital to investigate a possible Periacetabular Osteotomy (PAO) as a way to delay total hip replacement which would be the next step.  Dr. K in Boston said she wasn’t a good candidate and it was a matter of time before she would have to have a right total hip replacement.  He said the amount of pain she was in would tell us when it was time.

2018 update

Well, it’s time.  Meghan’s freshman year at college put her hip to the test and unfortunately, she has been in a lot of pain due to walking around campus.  The only option is total hip replacement.  She is scheduled for right hip reconstruction/total hip replacement on June 14, 2018.  The surgery will be performed in Alexandria, VA and she will spend one night in the hospital.  We are hopeful that she will make a full recovery in time for the start of her sophomore year in college.





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Melodee

Melodee

My passion for open water and marathon swimming has been a gradual process; one that I would never have imagined when I started more than...

My passion for open water and marathon swimming has been a gradual process; one that I would never have imagined when I started more than 20 years ago.

Although I returned to swimming 20+ years ago, it has always been a part of my life. I was born with hip dysplasia which was first noticed at a routine check-up soon after I was born. Subsequently, my father took me to a referral appointment with an Orthopedic Specialist. At the doctor’s direction, my father admitted me into Children’s Hospital and sadly went home alone that evening because parents were not encouraged to stay with their children in those days. I was immediately placed in a half body cast. I had multiple surgeries as a young child; one to correct the angle of the hip, and one to try and correct the difference in leg length as a result of the first surgery.

I have never been able to participate in impact sports because of the one inch leg difference, which also causes me to limp (without my corrected shoes). I vividly remember one of my last appointments with my pediatric orthopedic surgeon when I was 18 years old. He told me two things: 1) “Watch your weight” and 2) “You will probably need hip replacement by the time you are 40”. Like most teenagers, I thought I was invincible at that age, but his words have always stayed with me over the years. Swimming has helped keep me in shape and maintain my weight. As for hip replacement, that has not happened yet and maybe never will. I do tire easily from walking a lot, but if you put me in the water, I could swim for miles.

I saw my doctor about 8 years ago and, as always, he wanted to observe my walking. Then he was curious as to how my hip looked after all these years. He was very pleased with my hip x-ray and said everything looked great. I credit swimming 100% to my overall health. Swimming is a low impact sport and thus makes it a perfect sport for me and others with similar joint issues. There are many swimmers over the age of 40 because swimming is very easy on the joints. Unlike other endurance sports, specifically including running and cycling, wherein athletes are subjected to rigorous pounding of their joints, swimmers can continue to get better as they age.

I have always been exposed to the water. Our family joined a private club when I was very young. I quickly graduated from the baby pool to the intermediate pool, and then hit the “big” pool. By 8th grade, I joined the swim club in our city and, a year later, the girl’s high school swimming team. I swam the same events for every meet; the 50 backstroke in the medley relay, the 100 yard backstroke, and the 100 yard butterfly. I didn’t know about any other events, since the coach put you where he needed you. I thought my friend, Martina, who swam the 500 freestyle was crazy! How boring was that to swim 20 lengths of the pool in a race. In college, schoolwork took priority, but I recognized that I loved to train and I stayed active by training on my own in the pool.

In 1994, I needed an activity to keep me busy and decided to dive back into the pool. It was not easy at first. The first day, I swam 200 yards and thought, “Well this is boring, what did I get myself into?” I slowly started to increase my yardage and soon was feeling like I never left the pool. A swim friend told me about United States Masters Swimming (USMS) and that piqued my curiosity.

I have been a member of USMS since 1995. The first six months of swim meets, I swam the 100 yard butterfly and 100 yard backstroke because that was all I knew. Then I thought, “Hey, no one is limiting me to only these events!” So I tried the 200 freestyle and realized that it was not too bad. I continued to push myself by increasing my distances, first the 500 (yard), next the 1000, and then the 1650. The more distance I would swim, the more in the “groove” I felt.

My first open water swim was in Lake Amy Belle (Wisconsin) in 1996. It was a one-mile swim and I was pregnant at the time. That is when I officially fell in love with open water events. During the next few years, I had three children (1996, 1999 and 2002) and continued to swim throughout all of my pregnancies. When I was four days overdue with my second child, I swam two miles, including flip turns, before the contractions started. My son, Kyler, was born 2 hours later. I quickly bounced back from all three pregnancies; my doctors and I both believe that swimming should be credited for my quick recoveries.

I mainly swam one to three miles and did not know anything about marathon swimming. In 2006, I decided to try a longer swim, 5-miles in Minnetonka, MN. I finished 27th out of 99 swimmers with a time of 2:17:51 – not too bad for my first long swim. In 2009, I swam 8+ miles in Lake Geneva for an event called, “Swim for Freedom.” I really cranked up the distance in 2011 by swimming the 25K (15.5 miles) in Noblesville, IN. This was almost double my previous record distance. That was a tough swim and I was very sore afterwards. But, I finished even though their 10 hour limit was reduced to 8 hours because of storms. I finished 26th of the 27 who were able to squeeze in the time limit. The other 39 swimmers did not finish in time or were a DNF (did not finish).

By the end of 2011, a friend convinced me to compete in a 27-mile river swim in the Red River in North Dakota. This was a huge undertaking for me, so in preparation, I spoke with a marathon swimmer and a marathon runner for advice. The advice was: 1) spend more time in the pool training, 2) straighten out my nutrition needs, and 3) peak at the right times prior to the event. Knowing there was a river current was helpful, and I felt very good throughout the swim. The Red River was a success! I finished 3rd place of the 12 swimmers, coming in at 9 hours and 23 minutes (first was 9:11 and then 9:15). I felt great after the swim, just a little sore as expected, but good enough to find a bar where we could all enjoy a nice cold beer and share our experiences. I found my passion for marathon swimming. I enjoy the swims because I learned how to prepare for them.

Since 2011, I have swam in various states to compete: 10-mile swim in the Tennessee River Gorge (2012), 12.5 mile swim around Key West (2013), a relay swim for “Swim Across America” across Lake Michigan (from Chicago to Michiana, Michigan) (2013), SCAR Challenge in Arizona (2014) – completed 3 of 4 lake swims for 30 miles in 4 days, 10-mile USMS Championship Swim in Minnetonka, Minnesota (2014), one of three swimmers to test the 18+ mile course for the Three River Marathon Swim in Pittsburgh (2014), 10K swim in Cayman Islands (2015) and 6-swimmer relay swim around Catalina Island and Santa Barbara Island for 100 miles in 51:55.07 (2015).





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Melodee v2

Melodee v2

~Melodee Nugent~ My Updated Story 1-month post hip revision surgery (December 2018)I already have had a previous Patient Story (click here) with the International Hip Dysplasia Institute...

~Melodee Nugent~ My Updated Story

1-month post hip revision surgery (December 2018)
I already have had a previous Patient Story (click here) with the International Hip Dysplasia Institute in November 2015 regarding my hip dysplasia story and how well I had been doing. A lot has changed since then, and I feel I need to give my revised story.
First off, I encourage anyone with hip dysplasia to get in the water and swim. I know swimming is not for everyone, but it is one of the best sports out there that is easy on your joints. I am lucky to have chosen swimming as my sport (though I didn’t really have many options with my hip dysplasia). I have swimming to thank for helping to make me the person I am today. I can’t imagine myself without this sport I love.

I was born with hip dysplasia which was first noticed at a routine check-up soon after I was born. I had multiple surgeries as a young child; one to correct the angle of the hip and one to try and correct the difference in leg length as a result of the first surgery. I vividly remember one of my last appointments with my pediatric orthopedic surgeon when I was 18 years old. He told me two things: 1) “Watch your weight” and 2) “You will probably need hip replacement by the time you are 40”. His words have always stayed with me over the years.

I credit swimming 100% to my overall health and putting off the hip replacement by about 10 years. I was able to have three children without any complications for the hip. Swimming is a low impact sport and thus makes it a perfect activity for me and others with similar joint issues. There are many swimmers over the age of 40 because swimming is very easy on the joints. Unlike other endurance sports, specifically including running and cycling, wherein athletes are subjected to rigorous pounding of their joints, swimmers can continue to get better as they age.
My passion for swimming has been a gradual process; one that I would never have imagined when I started as an adult more than 20 years ago. I joined United States Master Swimming at the age of 27 (1994). I consider myself a marathon swimmer. I train in a pool all year long. I love the open water races (I have competed in 12 different US states and have traveled to the Caribbean as well). A marathon swim is considered any distance of swimming over 6.2 miles (which is the equivalent of a marathon run). To date, the farthest I swam was a 36-mile swim in the Red River in North Dakota in 2016 (a year before I had my hip replacement). That race took me 12 hours and 27 minutes to complete. I am always looking for new challenges.

Swimming never bothered my hip, probably because being a distance swimmer there is little kicking involved. At the end of 2016, however, my youngest daughter said, “Mom, you say owww all the time”. I knew I was slowing down with walking, doing stairs and bending. I was used to my slower lifestyle on land and learned to deal with it and thought that was just life. I went to the doctor in January 2017 and got the surprise of my life, the reason for the slowness was because there was little, to no cartilage left on my bad hip. Was I shocked….completely! It definitely explained how I had been feeling. I tried a cortisone shot, with hopes of it lasting long, but it lasted only a couple weeks. Then I had to make a major decision, should I go ahead with total hip replacement surgery? This was not quite the 50th birthday surprise I was expecting. I knew my situation was unique and made the surgery more complicated than a regular hip replacement. I really felt that was the best choice for me. The big bonus was that my surgeon would try his best to lengthen my short leg (one-inch leg difference). I was very excited about that possibility.


Hip replacement surgery went well, though my femur splintered, which I knew could happen. I had weight restrictions because of the splintered femur and the leg lengthening, which meant I had to use a walker for the first six weeks. Then I used a cane for another 6 weeks until I felt comfortable walking. I was told the recovery would be about one-year and then my doctor changed it to 6-months because he said he knew I would be tenacious about recovery.
I needed to wait 4 weeks post-surgery to hop in the pool. I really missed my athletic club during my month off from swimming. Not only am I friends with swimmers, but other members as well. They are my second family. I rarely miss a day in the pool. I started back gradually by swimming 1000 yards and slowly increased the distance. Not only was I swimming laps in the pool; but water walking, water jogging and PT exercises as well. It was early summer, and I spent many many hours in the pool (we have an above ground pool at home). I spent at times up to two hours a day of water walking, which involved reading a book that was on the float and walking in circles. I was also able to do my first open water race 2 months after the surgery. I still was not up to speed and needed assistance getting out of the water and walking to the beach but was thrilled to be able to compete. I was able to do 5 more open water swims in 2017. I knew the recovery would be long, but it was going so well. I truly believe that all my water activity shorted my recovery time significantly.


What made me happy was doing underwater dolphin kicking and when I looked at my feet, it was so cool to see my toes line up evenly. It made me appreciate what I went through. Plus, I could buy any shoes I wanted and did not have to examine shoes to see if a shoe lift would work. I was the happiest about that because I thought I would always walk with a limp.
I continued to do well after the surgery. I was even written up in the Froedtert Today magazine a year later. I had a great swim season in 2018 and did very well in my open water events. I did a 15-mile swim called “Border Buster” in Vermont in July 2018. Lake Memphremagog is on the border of Vermont and Canada, so we swam across the border into another county. In August, I went on an 8-mile walk with my girlfriends along Lake Geneva (Wisconsin). I would have never done this prior to the surgery because I would have never made it. I also went to a big Milwaukee festival called Summerfest that summer. My girlfriends and I were talking about why it has been so long since we came, and it was because I could not have walked that much before. I didn’t think of the hip issues anymore, I had put that chapter of my life behind me…….or so I thought.

I had my follow-up the next month (September 2018), this was actually 16-months post hip replacement surgery. I was asked questions about my physical activities and I explained all was good. Then my doctor pointed out his concern, there was a shadow on the x-ray showing that the implant has moved. I didn’t notice any pain associated with the hip (though upon reflection there may have been some red flags). He told me to be aware of thigh pain and not dismiss it as something else.
I was surprised and concerned after that appointment. It never occurred to me that it wouldn’t work out for me. We discussed coming back in 6 months to see how the x-ray looked.
I went on a trip soon after that and returned to notice the start of thigh pain. After a couple friends asked me about how my hip was doing (no one asked in so long, but apparently, I was limping again), I made an appointment with my doctor one month after I last saw him. I am glad he mentioned to be aware of thigh pain because I would have dismissed it as something else and I am sure it would have taken me awhile to figure out it was related to the hip. The x-rays didn’t change, but it was apparent that something needed to be done. Three weeks later I had the revision surgery on November 5th, 2018. Prior to surgery, there were uncertainties on the recovery. It all depended on how the hardware came out, if it came out easily, then a quicker recovery. If he had to break the femur to get it out, then it would be a longer recovery. Of course, there were problems getting out the old stem and the femur had to broken to get it out (he spent 2.5 hours trying to get out the old stem).


The surgery was over 5 hours long and I now have a longer stem (about 8 inches long instead of 5 inches). With the femur broken, I was not able to weight bear for 6 weeks and used a walker again.
The recovery from this surgery was different than before, the scar was almost double in length (higher and lower), which meant sitting was difficult. I spent most of the first 2-3 weeks laying down with the couch only slightly reclined. Pain was mostly in the lower femur (because the new stem was longer). I went back to work part-time at 5-weeks, which may have been a week too early because I still was not sitting comfortably yet.
I was extremely happy to be back in the water 1-month post. Everyone at the club who knows me noticed the smile on my face to be back. For me swimming is not only a physical activity but is also a part of my rehab. I started out gradual again with the swimming. I would use the pull-buoy for the first 2 weeks (which is foam piece you put between your legs) to work on the upper body (this prevents me from kicking). I actually showed the doctor a video of me swimming with the pull buoy prior to surgery so he wouldn’t have concerns about me back in the pool. I was back to my normal distance of 4 miles a day in about a week. Of course, I was not breaking any records, not doing any timed sets and not doing flip turns. That will all come with time. At my 6-week appointment, everything looked good so far and I am hopeful at 3 months it will look good too.


After having two hip surgeries in a year and a half, I would encourage others to look at “weekly” improvements, not daily. It is difficult to see daily changes, but easier to notice the weekly changes. Each week I would see improvement in my sitting, moving around, walking and bending. I was often asked how I felt about having another surgery so soon. Of course, it was not what I had planned in life, but I feel there are much worse things out there that people struggle with daily. This for me, was only a bump in the road of life. My husband did mention to me recently how proud he was for how hard I worked at the recovery and how well I took this second surgery.

Swimming has taught me lifelong lessons, not just in the pool, but outside of the pool as well. The water will always be my “happy place” where I can escape the real world, clear my mind and push my limits to train for those crazy marathon swims. Those mornings where it would feel great to stay in bed, swimming teaches dedication and hard work. Most non-swimmers can think of something else they would rather be doing than follow a blue line in the pool for hours. I never get bored of that line in the pool; it will always be there for me. Swimming taught me discipline, commitment and goal setting. Commitment that can sometimes be obsessive at times. I love to have a big swim planned and have months to prepare for it. Without the many hours spent to meet these goals in the pool, I wouldn’t know what hard work feels like and to go after something you really want to accomplish. These characteristics will carry me through the rest of my life and helped me with the recovery of my hip surgeries. I am not sure if I chose swimming or swimming chose me. I think it goes both ways, but whatever way it is, I am lucky!





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Michelle

Michelle

My name is Michelle, and for all my life I can remember having trouble with my hip. As an infant, I was diagnosed with congenital...

My name is Michelle, and for all my life I can remember having trouble with my hip. As an infant, I was diagnosed with congenital hip dysplasia. I was seen at Stanford’s Children’s Hospital and went through the standard course of treatment. At a couple of weeks of age, I was placed in a Pavlik Harness which was unsuccessful. Then I went through a series of closed and open reductions to try to get my hip back in the natural socket. With each surgery, the doctors repositioned my hip, but it never stayed in the socket even though I was placed in a spica cast each time post op. By age 3 after multiple failed closed and open reductions, the doctors and my parents decided to leave my hip out of the socket. While going through all these surgeries was a difficult time for my family, luckily I don’t have any memory of this period.

From age 3-12, I was able to engage in normal activity. I went to school, played sports, and participated in dance. I walked with a limp because my left hip was located higher than my right hip, but it did not cause major problems. However, one day out of nowhere, in 6th grade I woke up to in extreme pain. We went to see my orthopedist and he took x-rays but could not find anything out of the ordinary. We hoped the pain would dissipate, and I was prescribed pain medicine. The medicine was not very effective and soon we were referred to a pain clinic. They too were baffled by pain. However after 2 months, the pain seemed to go away.

In the fall of my 7th grade year, my orthopedist preformed a pelvic and femoral osteotomy. The hope was that his would prevent future pain. I was once again placed in a spica cast, had to use a reclining wheelchair for about 3 months, and then afterwards I went to PT to learn how to walk again. Overall, the pain was managed pretty well, but being in a spica cast as a 13 year old girl is no fun.

In 8th grade, my orthopedist lengthened my left leg in order to reduce my leg length discrepancy. This was extremely difficult for me. The surgery basically involved having the doctor break my tibia on purpose under anesthesia and then place pins and a rod that stuck out of your leg. I had to turn the device 4 times a day and each day my bone is pulled apart 1 mm. The idea is to pull the bone apart because the body will naturally fill in the breaks. Normally, this is not supposed to be a painful process, however, my device was placed incorrectly which led to excruciating pain that the doctors did not believe. They lengthened my leg about 2 inches over a period of about 6 months. The surgery was technically successful but it left me being extremely wary of the medical profession.

In 10th and 11th grade, the hip pain that I experienced in 6th grade returned. Both times the pain came out of nowhere, and it lasted for about 6 months. It hurt to walk, and I stopped going to school because I was in so much pain. I withdrew from my friends and spent most of my time on the couch watching television. I went to see multiple orthopedists, pain doctors, neurologists, chiropractors, acupuncturists, and no one could identify the cause of my pain. I had x-rays, MRIs and bone scans performed. I tried a tens unit and biofeedback and was prescribed a variety of pain meds none of which were effective at reducing my pain. On most days, my pain was stayed at 7 out 10 all day long, and the doctors considered placing me in an inpatient pain clinic to try to manage the pain. Even though my hip was out of the socket (and had been basically since birth), most of the doctors did not think this was the cause. I kept getting referred to different doctors but none of them were able to alleviate my pain or give me answers.

In October of 2002, my life changed when I met Doctor Diab at UCSF. Despite being shown the same x-rays that my previous doctors had seen, he had a completely different interpretation. He told us that it is common for girls in adolescence who have a false socket to start experiencing pain, and he recommended doing a hip fusion to alleviate the pain. At this point, I was 17 and my options were to have a hip replacement, fuse my left hip, or wait and do nothing. However due to the intense pain, doing nothing was not a real option. I had already missed a year and a half of high school and felt completely hopeless.

Ultimately, I decided to have a hip fusion where my left hip was basically cemented and screwed in place. My left hip is fused at angle so while my gait is not “normal” it not as dramatic as you would imagine. I have no movement in my left hip. I decided to undergo this significant surgery for a couple of reasons. After getting second opinions, no doctors recommended getting a total hip replacement for a 17 year old, and I did not want live my life being cautious about putting too much wear and tear on the artificial joint or feel guilty when the hip wore out because I had been active. I also was casted in a fused position before surgery. This allowed me to experience what my life would be like with a fused hip, and it also significantly reduced my pain. Being casted made it a lot easier to move forward with surgery because in essence the test run had proved beneficial.

I had my fusion in May of 2003. The recovery took a couple of months, but my pain was greatly reduced compared to how I felt before surgery. I was able to return to school in August of 2003. The only restrictions my doctor has told me is to not engage in activities that cause pain. About 95% of my pain has been alleviated and I was able to go off to college without any problems. Having my hip fused does present a couple of challenges. Sitting for long periods of time can be difficult. I often like to use a pillow for my back or need to shift positions frequently. I am unable to ride a bike, and I have to pick shoes that I can slip into because I can’t bend at the waist to reach my left foot. Despite some of these inconveniences, I have very glad I had the fusion because it allows me to live my life without a lot of pain. While there are some activities that I physically can’t do because I can’t bend at the waist, the list of activities that I can do is much longer. I am able to swim, run, practice yoga, hike, drive a car, and I teach fulltime, which involves me being on my feet most of the day.

It has now been 12 years since my fusion. I hope that sharing my story provides people who feel as though they don’t have many options with questions they can ask their doctor. A hip fusion is not an appropriate procedure for many people, but for me it relieved my pain and has allowed me to live an independent life. I have been told most orthopedists are no longer trained in performing fusions partially because they don’t make a lot of money compared to hip replacements. While a fusion will definitely limit your range of motion, there is no expiration on it as opposed to replacements. My orthopedic troubles have had a great impact on my life, and I hope you are able to find a doctor you trust, who listens to you, and is able to help you live a pain free life.





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Michelle

Michelle

I was born with bilateral hip dysplasia. My left hip is worse then my right. It effected my whole life. I couldn’t play with the...

I was born with bilateral hip dysplasia. My left hip is worse then my right. It effected my whole life. I couldn’t play with the kids on the playground. I was full of shame because of my limp. I felt I attracted a lot of negative energy because of surgeries I had as a kid. It was a lonely cause no one I knew experienced what I was going through unless I was in the hospital.

Just 3 weeks ago I finally got a THR. I am so happy I can’t wait to feel like a person I always wanted to be but couldn’t cause it was too painful to face what was my reality or my limitation. People can say some heartless things. Just cause you can’t see the pain doesn’t mean it’s not there all over your lower half of your body. You’re body compensates for your bad hip and causes you tremendous amounts of pain. It’s hard asking for help and losing your independence.

There is so much I could say I don’t know where to go from here. I guess if any of you do get a hip replacement too please be forgiving of yourself and cry if you need to. It’s not like a typical hip replacement we have different anatomy and extenuating circumstances. So our healing takes longer. Be kind to yourself cause it’s a lonely journey. No one knows it unless they walk it and not too many have it all their lives. I have limped so long I am struggling with walking even. Just be kind and patient with yourself.





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Mikayla’s Story

Mikayla’s Story

Hello to everyone who is reading this,My names Mikayla and I’m 12 years old. I’m in year 7 and love singing and photography, I also...

Hello to everyone who is reading this,
My names Mikayla and I’m 12 years old. I’m in year 7 and love singing and photography, I also used to play a lot of basketball and had played a few games of netball. I was diagnosed with Developmental Hip Dysplasia in 2012 when I was 10. I had just come out of basketball training and had cross country the next day, my hip had been a bit sore lately but because I have always been tall we just thought it was growing pains. I asked mum if I could go for a run around and oval, so she let me go. I got half way around the oval when my leg went from under me and I fell. Mum came rushing over carrying my, at the time, 3 year old sister. She helped me get to the car and then we went straight to my local doctors. He sent me to the hospital saying that it was urgent, I was now in a lot of pain.

I got a x-ray and 4 weeks later I met with my surgeon. He told me I had severe hip dysplasia and a massive tear in my cartilage. I had a Triple Pelvic Osteotomy and then started to do all of my rehab. Everything was going well and then I had my checkup. My surgeon told me that my femurs were to angled inward and that I would need a Bilateral Femoral Osteotomy. This was the worst surgery I’ve had, both of my legs felt like blobs and I had to learn to walk again which was very painful.

Through both of these surgeries I was having nerve spasms and doctors also picked up through a M.R.I that I have kidney issues which means I can not take anti-inflamitories. I would do some rehab and increase my work load and then I would have a horiffic spasm and I couldn’t walk for a full day. 9 months after my 2nd surgery I had all of the plates and screws removed. I was again doing all of my rehab and was even just about to start running again! I had just gone on my first high school camp and was joining in on P.E lessons.

I started getting pain again and felt that something was wrong. I was getting aches and sharp pain. Mum and dad also knew that something was off so mum drove me into the emergency room. I had and x-ray done and then, again, met with my surgeon. He told me I had torn my cartliage again and had rebound dysplasia (where the hip surgery undoes it’s self or the dysplasia comes back.) So just over 3 weeks ago I underwent a Periacetabular Osteotomy. It’s all going well and I’m glad I got it done. I have down days but my dads jokes, mums cooking and my little sisters cheeky personality keep me going with a smile on my face.





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Miles

Miles

About two years ago, my 17 year old son started experiencing moderate to severe discomfort in his right hip. He was a lacrosse player and...

About two years ago, my 17 year old son started experiencing moderate to severe discomfort in his right hip. He was a lacrosse player and the pain seemed to be triggered by long practices with lots of running over hard ground. We tried all the normal things at first including; ice and heat, ibuprofen and just grin and bear it, but the pain seemed to get progressively worse.

When he started limping and missed a few games, we knew that we had to do something. Our fist stop was the pediatrician. He didn’t know exactly what was wrong, but recommended that we see a sports medicine doctor. This guy took some X-rays and suggested that Miles may be suffering from hip dysplasia. How can this be? I thought hip dysplasia was a condition only found in German Shepherds and Golden Retrievers.

I immediately got on the internet and began to research. I was surprised to learn that this condition was exceedingly common. By some estimates, it effects as many as 1 in 20. Before too long, I came across the IHDI website. I will be eternally grateful for the information and resources provided by this organization. I was able to educate myself on hip dysplasia, read actual patient stories and find a list of physicians who specialize in this condition.

To my surprise and delight, we are very close, only about 2.5 hours drive, from a hip dysplasia expert. We made an appointment to see the orthopedist.

From the moment we checked in, we knew we were in the right place. The receptionists, nurses and X-ray technicians put us at ease and the orthopedist was amazing. He exuded charm, confidence and empathy. Even though he was recommending major surgery, with a long and painful recovery, we felt confident that this was something that could be fixed and we were in good hands.

About 3 weeks ago, Miles underwent the PAO procedure. The operation took about 10 hours because he needed labrum repair too. It was nerve wracking and stressful, but the frequent updates through the EASE App made it much better. The orthopedist met with us immediately after the surgery to answer our questions and let us know that everything went according to plan and we could expect very good results.

Post op, we spent about 4 days at the hospital. I can’t say enough good things about the nurses and support staff. They are unsung heroes who watched over my son day and night. The care and expertise they provided was exceptional. They even set up a bed in the hospital room so my wife and I could be by his side at all times.

Hip dysplasia sucks, but we are so thankful and blessed for the help we received along the path. In particular, we appreciate the dedicated doctors and nurses, the IHDI, the Whitney family and everyone who supports the IHDI Mission. If sharing our story helps even one person who is suffering from this condition, then that, for me, will have been a big accomplishment.





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Missy

Missy

Hello all. Growing up I had no idea that there were others like me. Except for a story that my doctor told my mother about...

Hello all. Growing up I had no idea that there were others like me. Except for a story that my doctor told my mother about a little village in Italy where all the females born had Left hip dislocations. The WWW has created a kinship those like me would otherwise never know.

Mine wasn’t discovered until I started walking. There’s a picture of me standing on our front porch, right foot flat, left foot on my toes. Decades of walking on my toes (I’ve always hated shoes!) changed the shape of my foot. My heel never touched the ground.

I was referred to a doctor and I have no doubt he saved my life. Without him I would have been in a wheelchair forever. I had my first surgery at 18 months old and 1, 2 or 3 a year for the next several years. I taught myself to walk in that frog cast with the bar between my knees, chest high and to the toes on the left, to the knee on the right. I went up and down stairs and outside and crawled on my swing set. That was my normal; I didn’t know any different. When I was 5 I fell off that swing set and the cast snapped my leg under my knee. After that it was full casts on both legs. Plaster casts in the humid summer were no fun! I had a few procedures where he had to break my femur and rotate it because my left leg kept turning in. Pins were put in to hold it in place. And pins managed to find their way out! My mom totally freaked when I showed her the pin sticking about an inch out of my inner thigh. Straight to the hospital we went and I got to keep the pins. I thought it was cool.

I was born without a socket and what little ball I had was flat. All those many surgeries were to try to keep it in place. By the time I was 13 my leg length discrepancy was 3.5 inches. Grade school will forever be associated with built up Saddle Oxfords – black and white and tan and brick. I’m pretty sure if I ever see a pair again I’ll collapse in terror. My leg also didn’t get as good of circulation as the right so it is smaller around too.

I had a reprieve for about 6 years or so and when I was 13, the summer after 7th grade, I got my first hip replacement. A month of traction to stretch the muscles then a surgery that was pure hell. Muscles had bunched and tangled into that empty space and had to be cut out before the appliance could be put in. I think I screamed for 3 days straight. No amount of pain killers would touch that pain. Doctors came from all over that hospital with suggestions and nothing worked. Only so much morphine you can give a 70lb kid before she stops breathing.

After that the length difference was about 2.5 inches. I put lifts inside my shoe – no way was I ever wearing another build up shoe. When I was 18 – happy graduation! – Doc took out 2 inches of my right femur to make my legs more even and try to alleviate as much future back trouble as possible.
I had my son 13 years after that first hip went in. I tried natural but after a day or so (that’s a whole another story) he came C-section. Hip #1 lasted for 3 more years until I fell on ice and snapped the fake ball off of the fake femur. Of course we didn’t know that’s what happened because I lived on pain pills for a year between the fall and the surgery. Doc told my husband that after surgery #2.