Gina JayGina 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!”
Sam BowenHere is the story of one mums fight against the social stigmatism associated with a child in a cast. She overcame the obstacles place before her by...
Here is the story of one mums fight against the social stigmatism associated with a child in a cast. She overcame the obstacles place before her by hip dysplasia and build a company to help parents of newly diagnosed children. Follow along as she tells you how it all happened;
Hi my name is Sam Bowen and I am the Director of Hip-Pose Ltd (click the link to see the wide range of products offered by Hip-Pose) a clothing range for babies and toddlers being treated for hip dysplasia. My ‘story’ is going to sound familiar to many parents of children with this condition, but also has a big difference which lead to me setting up the company.
My daughter Lucy was born at term but was very small and extended breach. When you see your newborn for the first time and their left leg is bent behind their head like a yogic master you kind of expect there will be consequences! Despite checking however her hip dysplasia was not detected.
Because of her small size, Lucy spent two weeks in a special care baby unit and various tests were done, one of which being a genetic test. These first weeks were taken up with learning the enormous task of how to be a parent and wishing there was a ‘rule’ book written about it.
At six weeks we took Lucy for a routine hip check and were upset, but perhaps not surprised, to discover that her left hip was dislocated. She weighed just over 6lbs at the time and had to be fitted with the smallest Pavlik harness they could find. I remember feeling numb and very protective of my tiny baby as this alien and constricting harness was put on her. The timing of the DDH diagnosis could not have been worse as just a few days before, we had learned that Lucy has a unique genetic fault on two of her chromosomes. Because it was unique, there was no evidence to what the future would hold apart from it being bleak in terms of her health and development.
The nurses who treated Lucy were very kind and helped me to focus on the DDH as something that was treatable and could be fixed. It was summer, so although it pained me to have to cut up all her lovely new clothes to fit over the harness, at least she would not be cold. I was instantly hit however, like a truck in the face, when complete strangers would look at my daughter and gasp or make senseless comments. Luckily Lucy took to wearing a harness with ease, although it did make the Colic a little more difficult as she couldn’t lie on her front.
After six weeks of treatment the harness came off, the left hip had realigned and all looked normal, so it was devastating that at the six month check up it was discovered that it had come out again. This time we were talking about surgery and she was still very little. A new team of people swept into our lives, to join the by now growing team of pediatricians and therapists helping with Lucy’s medical and developmental needs.
I still feel genuinely lucky that the team treating Lucy’s hip dysplasia were so fantastic. They treated me like an equal and wanted my opinions, they were humorous and yet extremely professional and most of all they doted over Lucy. It was decided that due to Lucy’s slow growth, we would wait until she was a year old to do the surgery. As the date drew closer, I started to panic about coping when Lucy was in a Hip-Spica cast. The difficult nappy changes, how to carry her, whether she would sleep, how we could get her into a car seat/pushchair/high chair. The list of complications to our already complex life seemed endless. I was signposted to a charity called STEPS who provide advice to parents on DDH and lower limb conditions. We bought a Britax two way elite car seat with special hip-spica adaptations, our Occupational Therapist obtained a hip-spica chair on loan and luckily the lovely pink pushchair I’d treated myself and Lucy to was an ok shape to take her in a cast.
The day of surgery arrived, and we anxiously waited in a room with another couple whose daughter was due the same procedure. The mum and I quickly made friends and to this day are very close as it turns out her daughter also had a rare chromosome condition and our girls are now best buddies in the same class at school. Having a friend going through the same DDH journey proved to be really helpful. Today there are many social media sites with groups dedicated to DDH and the mutual support parents give to each other is heart warming and much needed.
I will never forget that first operation, as I soothed Lucy whilst she was anesthetised for the first time. Nothing prepares you for it, you just have to have faith and a lot of trust that the Dr’s know what they are doing. Overwhelmed with adrenaline, I spluttered out “Promise me she won’t die” shortly followed by “Promise me you’ll use the purple cast” luckily I said these in the right order! As crazy as it sounds, having a coloured cast seemed the only way to me to avoid the horrible comments I’d heard other mums face. One local mum had told me that on her first day out with her daughter in cast, she had been approached by a stranger who’d asked if she had dropped her child down the stairs! Now I know a full hip-spica cast can look a bit alarming, but really I was speechless when I heard this, and very angry.
It was now approaching winter with frequent rain (like gremlins the cast must not get wet we were warned!) so I designed and made a pair of waterproof trousers to fit over Lucy’ cast. We still had many other medical and therapy appointments to get to plus I refused to keep her shut indoors for the three months of treatment. At one of her hip checkups, the nurse and Surgeon both remarked on her trousers saying they had never seen anything like it before and how wonderful they were. I also noticed that when the trousers were on no one took a second glance at us; it was as if the cast was invisible. Encouraged, I made the trousers in a range of fabrics and actually had fun dressing my ‘hip kid’ as the months passed. They also came in useful after the cast was finally removed as Lucy’s legs used to being held apart, stayed in that position for a couple of weeks. The hip-spica trousers allowed for her stretched ligaments to contract in their own time and not be forced into regular clothes.
At about this time, it had become clear that I would not be able to return to work as Lucy needed specialist care and her small army of therapists produced a gruelling schedule for us. I can’t say that giving up my career in Museums was easy, I mourned for it for a long while. However the surgeon and physiotherapist continued to say I had a great idea with the clothing. So I went back to the drawing board and created a specially designed sleep suit and a romper to be worn over Pavilk harness. The hospital staff provided me with willing parents happy to trial the designs and I gave them a sleepsuit as thanks. I got their feedback and comments and one lady very kindly agreed to her daughter being the ‘model’ for Hip-Pose.
The creation of Hip-Pose (a name my Mum came up with!) was a whirlwind journey. I got a business mentor, registered as a Ltd company, won a £2,000 start up grant, sourced a manufacturer in the UK, designed my own website, got a logo, taught myself pattern making and finally went ‘live’ online all within a year of making that first pair of trousers for Lucy. If asked again, I really don’t know where I got the energy from to stay up late night after night and spending the few spare hours when Lucy was in nursery on the business. Looking back I realise now that that was my therapy, my way of pushing through the pain and grief of having a child with profound special needs. Everyone deals with the news differently and it felt imperative to me to create something positive out of a difficult situation. I had felt firsthand what it is like to feel embarrassed about your child’s treatment aid and be wary of going into social situations only to be challenged by another rude comment. I felt and still do feel passionately about helping parents to go about their everyday life as normally as possible at a difficult time. Dressing your child should be a fun activity and providing a practical solution to the problem was my main aim. I regularly get emails from parents saying what a difference my designs have made, one even called them a ‘life saver! It is a very niche market, but an important one, I have customers all over the world and work with hospitals that give a sleepsuit at diagnosis stage to help soften the blow of the news as well as educate parents on how to dress their children during treatment.
I hope to eventually reach out to every DDH parent and tell them about Hip-Pose, how to survive this difficult time and come out of it a little less battle worn!
Director, Hip-Pose Ltd
CherissePoppy 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!
Sarah Twomeyarah Twomey is a mother, occupational therapist and a hip dysplasia advocate. Her two daughters both have hip dysplasia. Eve’s was evident from birth, Maya’s didn’t...
arah Twomey is a mother, occupational therapist and a hip dysplasia advocate. Her two daughters both have hip dysplasia. Eve’s was evident from birth, Maya’s didn’t develop until six months of age. Their first years of life have involved the use of a brace to help correct their tiny hips.
This experience with her daughters forever changed her life and helped shaped her path.
Follow along as Sarah takes you down that path.
As I got the best cuddle tonight from my youngest, Maya, I was overwhelmed with love and admiration for all of her recent developments: pointing, getting on her trike by herself and, best of all, giving me hugs. Fourteen months is such a beautiful age — I remember wanting to press pause on time with our eldest Eve at this age too. I think tonight I was stopping to smell the roses, so to speak, as tomorrow we go back to the orthopaedic surgeon for Maya’s next check-up.
Eve and Maya both have hip dysplasia. We’ve been on the journey towards healthy hips for our girls for almost three years now. Our journey has not been as challenging as some, but not as fast as others; it is our journey and no two are the same.
Eve was breech, and when she was three weeks old, we were told a short stint in a Pavlik harness would correct her shallow hip sockets and we could put it all behind us. Eve got the green light to stop nighttime bracing just before her second birthday. Eve wore a harness then brace 23/7 for 10 of her first 12 months of life. Her next check-up in November will be one year after treatment finished. We are confident she has avoided surgery, but have learnt to keep an open mind.
Maya kept her head down during pregnancy and we thought she would therefore avoid any trouble with hip dysplasia. Her 6- and 10-week ultrasounds were promising, but by six months she needed to go into a brace. Maya only needed four months of 23/7 bracing and, for the past four months since then, has been using a brace during nights and naps. We wait with bated breath for the outcome of her check-up tomorrow.
Back in February, I found my niche: combining my determination to be the best mother I can be while not losing the career I loved as an occupational therapist. I saw a need for increasing support, education and resources in Australia to benefit all people impacted by hip dysplasia, along with the community-based health professionals working with them. To work towards meeting this need, I established the not-for-profit organisation Healthy Hips Australia.
Occupational therapists approach the hurdles thrown at people in life, using a holistic approach to minimise the impact of those challenges on a person’s independence and engagement in activities.
Treatment for hip dysplasia, across the age span, has the potential to impact significantly on all areas of a person’s life. Things we take for granted — such as showering, bathing, personal hygiene, toileting and dressing — are significantly harder, if not impossible, for those affected during treatment. Community access (via car, pram or foot), leisure activities and age-related learning (milestones for babies, schooling for children, work for adults) may be put on hold for some or the duration of treatment.
Taking a holistic approach to hip dysplasia — helping reduce its impact on activities of daily living and better connecting parents to health professionals — will, I believe make working and living with this condition a little easier.
As the world leader in promoting prevention, diagnosis and treatment of hip dysplasia, I was delighted to be asked to join the International Advisory Board for the International Hip Dysplasia Institute (IHDI). I believe our approaches are complementary in working towards the same goal and I look forward to contributing regular content to the IHDI website. Click here to view my bio.
Natalie TriceNatalie Trice is a mother, wife, author, blogger and writer and lives in the UK. She has two sons, and her second, Lucas, was diagnosed...
Natalie Trice is a mother, wife, author, blogger and writer and lives in the UK. She has two sons, and her second, Lucas, was diagnosed with DDH when he nearly five months old.
Ever since, Natalie has worked tirelessly to raise awareness of the condition that affects so many children and adults around the world. As well as writing about it on her blog and in the media, in 2015 Natalie’s first book, Cast Life – A Parent’s Guide to DDH, was published and is now selling globally. Natalie also launched DDH UK which focuses on raising awareness and offering information for people effected by hip dysplasia.
Here is Natalie’s Story
I know only too well that whilst DDH is not life threatening, it really is life changing. The earlier it is spotted the less likely a child will suffer a lifetime of pain, disability and hip replacements. However, all too often cases are missed and children are diagnosed later than we would like.
My son was diagnosed with DDH just before he was five months old and we went from a life of coffee mornings and baby yoga to endless appointments, scans and operations. I wanted know as much about the condition as possible so I understood the treatments being offered and could see a way forward.
My initial search threw up horrific images and worst-case scenarios that simply compounded my fears. I felt totally out of my depth and alone.
Lucas had his first operation, a closed reduction, when he was just eight months old. His condition was too severe, and detected too late, for the pavlik harness to work so this was the next logical step.
For Lucas, this procedure and the cast and harnesses that followed, didn’t work and he went on to have an open reduction and femoral osteotomy when he was two. Post-op he was placed in a broomstick cast for months and despite this being a challenge, it was worth it when we went for the check ups and things were looking great. His hardware was removed the following year and everything was looking really positive.
One thing I have learnt is that DHH sometimes comes back and bites you and this happened to my darling boy.
He was doing well at school, running around with his friends and was always playing football, but then in June 2015 we were told things weren’t looking good once again.
My husband and I were totally floored. Lucas was six and we just didn’t see this coming, why would we? This time he needed a pelvic osteotomy, his fourth and largest operation to date.
Ironically two days before he was wheeled into theatre we had the launch party for my book, Cast Life – A Parent’s Guide to DDH’,
Cast Life was inspired by my son and is the book I wish I could have read during those lonely, uncertain early days at the start of our journey. It includes everything from clear explanations about the condition and the treatments involved to the products available to make life easier for children in casts. It also looks at family life, dealing with emotions as well including first person stories and parent comments. Over time I cobbled together information as we went along but didn’t ever find one solid resource that offered me comfort and solace.
Professor N. M. P. Clarke ChM, DM, FRCS Consultant Orthopaedic Surgeon, who wrote the foreword for Cast Life, commented, ““DDH is one of the most common congenital abnormalities and it is remarkable that there is so little information out there. This book is essential reading for the parents of children with the condition, as well as health professionals working with them, and I would love to see it in all clinics around the world.”
I’m not a medical professional, although many did contribute to this book, but a mother who hopes her experiences and the determination of her son and strength of her family will help empower others and offer them a little solace.
Lucas’ journey isn’t over and I have accepted that DDH is now a part of our family and our life. I am looking forward to working with the IHDI and other DDH organizations around the world to ensure there is more awareness of this life changing condition and the parents have the support the need for their journey.
Cast Life is available on Amazon and 10% of the book royalties will be going to this cause. I have also set up a charity called DDH UK offering information about DDH.
Sips for HipsMany of our readers know, getting a diagnosis of hip dysplasia is a scare thing. Typically, they don’t know anything about hip dysplasia and the...
Many of our readers know, getting a diagnosis of hip dysplasia is a scare thing. Typically, they don’t know anything about hip dysplasia and the unfortunate hardship it brings. On top of everything, they tend to feel very alone and don’t know where to turn.
When Kendra’s daughter was diagnosed with hip dysplasia she reached out to IHDI for help. We answered her questions and connected her with the hip dysplasia community for support. Kendra and her family have gone through countless hardships since that original diagnosis but she has never lost faith. In fact, Kendra took it upon herself to do what she could to help battle hip dysplasia.
Here is the interview we conducted with Kendra via email.
We hope you enjoy it as much as we did.
1)Tell us a little bit about yourself.
As I sit here writing this (with my IHDI pen and the bracelet that I haven’t taken off in almost 4 years) I will attempt to tell you a little about myself and our fight against this monster that we call DDH.
My name is Kendra Munoz, age 43, mommy of our beautiful daughter Peyton who is five and her older sibling Sophie age 6 and her younger brother Hobie age 2. Oh, did I forget to mention that her siblings are the cutest lil boxer pups around. I am also blessed to be a wife to my husband Steve for almost 20 years. We live, along with all of my family, in Oroville CA. We are about 1 ½ hours north of our state’s capital: Sacramento. This is a place where we love to fish in our lakes and rivers and go skiing in our mountains. But if you ask anyone, the most enjoyed events we have around here are the backyard BBQ’s with great friends, amazing food and some fantastic wine to go along with it. Why am I telling you about the great food and wine, well that is to be explained a little later.
2) What is your experience or connection with hip dysplasia.
Peyton was diagnosed with hip dysplasia at six months at a well-baby check. She was immediately sent to Shriner’s and was put into a Pavlic Harness for a month. She was then immediately switched to a Rhino Brace until 13 months. After which we enjoyed about a year of normalcy thinking that her hip would correct itself. At 2 ½ years she had her first pelvic osteotomy which failed so two weeks later she had another. She had her hardware removed three months later and we thought all was well until last August, at four years old, when the doctor informed us that it looked like there may be more surgeries to come.
When we started this journey I felt scared and alone. I did not know there was anywhere to turn. I had just heard of this diagnosis and how could there be anyone out there who knew what we were going through. I then found the IHDI! When I called Susan she was like the savior I had been looking for. She assured me that we were definitely not alone in this battle. She not only knew what Peyton was going through, but what we were going through as parents. The IHDI not only gave us professional advice and support, but also put us in contact with other families who were going through the same battles as we were. There was this huge family out there that we had not known existed, until contacting the IHDI.
3) Please tell us why you decided to get involved with the IHDI?
As word spread of Peyton’s’ hip dysplasia, the questions and statements started flying. Not only did people not know anything about hip dysplasia, the statements they did make were very upsetting to me.
“I thought that was just in dogs?”
“You mean like German Shepherds”
And my favorite “Kids don’t have that, its only in dogs!”
No one in this community knew anything about children with hip dysplasia, but everyone I had spoken to were very interested and responsive. People weren’t going to learn about this condition unless I did something to teach them about it. I knew that a fundraiser was the answer and the IHDI was the organization I wanted to fundraise for. The IHDI was there for us at every turn, it was now my turn to do something for the IHDI. I had to raise money for the organization that not only helped us in our great time of need, but countless others.
4) So how did you come up with the idea for Sips for Hips and what exactly is it.
I wanted to do a fundraiser that would appeal to a broader crowd, something that could be big. This is where the previous comment about loving amazing food and fantastic wine comes into play. The theme was the easy part, a wine and food pairing event. We needed a name that would grab people’s attention, so after much thought and many possible names, Sips for Hips was born. Now for the particulars. We went to a local winery and talked with them. They gave us the use of the winery free of cost for the event and a very generous discount on the wine to be used. I also talked to several caterers and found one that would donate their time and prepare the food at their cost. We had a local band perform that donated their time as well. The last thing that brought the entire event together was getting raffle and silent auction items from many of the local businesses in town, as well as some very special people who wanted to support our cause. We ended up with over 100 raffle items! Tickets went for $1 a piece or 15 for $10. We also had 15 silent auction items that alone brought in over $1000!
I put flyers up all over town as well as talked to every local business I could get to. I also had tickets available for advance purchase at a few predetermined places. The cost for a ticket was $40 which included a keepsake wine glass with our logo, a tasting of four wines paired with appetizers, an amazing desert and ten raffle tickets. The additional raffle tickets, along with wine, was available for purchase and the winery gave us a portion of the proceeds from the wine sales for the event as well.
When all was said and done, we had raised over $6700 for the IHDI! This fundraiser was an event that I gave my everything to. It just goes to show that if you’re passionate about something, coupled with hard work, you can achieve anything!
5) What were some of the hurdles or obstacles you came across when creating this event?
The biggest obstacle I encountered was time. I had many people who wanted to help but I wanted to do it all. I was crazy for not taking them up on their offers. The obstacles I thought I would have going into this was wondering if the community would support us with a cause they had never heard of before. That was proven not to be the case at all.
6) What would you tell someone who wants to get involved but doesn’t know how to get started?
Trust in yourself and the passion you have for the IHDI. I am a person that couldn’t talk in front of any crowd until the Sips for Hips event. You would be surprised at how excited your community will be to support you. When you get your idea, start writing things down and start talking to the people you would need to make this event happen. For us it was the winery, caterer, band and the individuals that donated all of our items for the raffle and silent auction. It is a lot of work but so worth it when you are able to talk to so many about hip dysplasia. When you have your idea figured out and dates reserved, etc., it all starts falling into place.
7) Will there be a Sips for Hips 2 and would I change anything from the first version?
Our event was amazing and I feel it was a huge success, but if I do another one it will have to be bigger. Perhaps reaching out beyond our “local” community, a bigger venue with multiple wineries and more food. There is always room to reach out for a few more raffle and silent auction items also. The chances in Sips for Hips 2 becoming a reality is always a possibility. It’s something that is always in the back of my mind.
8) Do you have any advice for someone newly diagnosed (or their parents) with hip dysplasia?
My advice for those newly diagnosed or their parents is to inform yourself. Know your options, get second or even third opinions and ask questions! Some of the knowledge you will receive unfortunately, comes with experience, but the information and support that I have received from the IHDI and the support groups of parents and patients are what gets me through those days that I feel I am going to fall apart. Along with this battle we are fighting for Peyton, I also was just diagnosed with hip dysplasia. Everyone in our hip family was there for me with phone calls or emails from the moment I let them know my diagnosis. Just knowing I have this support system for the both of us means the world to me. We were not given a choice but to fight this war, so I am so thankful that we are not having to do it alone.
9) What else would you like to say to people about hip dysplasia?
Hip dysplasia is so common, yet no one knows about it. This is why we all need to get out there and spread the word. Together we can, together we will.
For additional information about how you can get involved please check out our page: Get Involved
Spica Life“Tell us a little bit about yourself” We are Kyle and Bridget, and our children are Grayson, age three, and Londyn, age one. We currently...
- “Tell us a little bit about yourself”
We are Kyle and Bridget, and our children are Grayson, age three, and Londyn, age one. We currently reside near Milwaukee, WI but have lived many places thanks to Kyle’s service in the United States Marine Corps. Kyle is currently serving in the Marine Corps Reserve and working at a manufacturing plant while Bridget, a Registered Nurse, stays home with the kids.
- “What was your first experience with hip dysplasia?”
We were unknowingly introduced to hip dysplasia the day our daughter Londyn was born. In her newborn assessment at the hospital, the pediatrician flippantly mentioned that she felt a hip click. However, we had no idea what a hip click meant or that it could indicate something as serious as hip dysplasia. Brushing it off as a common newborn trait that goes away within a few weeks, the pediatrician told us not to worry, but just to make sure we bring it up at our daughter’s next appointment.
- “Take us through hip dysplasia journey”
At our daughter’s next few appointments, we weren’t told anything relating to her hips and it was documented that they thought her hip click had gone away. At Londyn’s four-month well child check, we saw a different doctor in the practice. Sure enough, while examining her hips, the new pediatrician felt a significant hip click and sent us straight for an ultrasound and an appointment with an orthopedic surgeon.
We had absolutely no idea what to expect. The only information we were given by the pediatrician who found her hip click was, “It’s not a big deal, she’ll just have to wear this special harness for six weeks and she’ll be fine. But it’s a really big deal because if it’s not treated right away she could need a hip replacement at age two.” We were completely confused, and scared. We went home and tried to do some research before her orthopedic appointment the following week, but given the wide variety of DDH outlooks, it was impossible to research what the future might hold for Londyn specifically.
Thankfully, when we finally arrived at our pediatric orthopedic surgeon’s office, our questions were answered. Yes, Londyn had hip dysplasia. We learned that her left hip was dislocated and her right hip was not measuring at the right angle. We then began our journey battling DDH. First, Londyn was to complete six weeks in a Pavlik harness, beginning immediately. We had arrived to the appointment not knowing what, if anything, was wrong with Londyn and we left with her in a Pavlik harness, which seemed like a medieval torture device to a mama’s heart!
Londyn wrestled with the harness but eventually accepted it, and even began to sleep at night. We made it through the six weeks, and then began slowly weaning her off of it, per our orthopedic surgeon’s instructions. At the time of discontinuation of the harness, we were told “Londyn’s hips have normalized!” The Pavlik harness was successful! Our orthopedic surgeon gave us four weeks to go home and treat Londyn like a normal baby and we’d check her hips in a month to make sure they had stayed on track. We were overjoyed and hoped this was the end of her hip issues.
At the end of our month of freedom, we were devastated to find that Londyn’s follow up X-ray revealed her hips were again dysplastic. The next step was a closed reduction and a minimum of twelve weeks in the spica cast. We cried, we processed, and then we planned and prepared. We found a small, supportive DDH community online which helped us obtain a spica chair and gave some other wonderful product recommendations. We scoured the internet for hope, for answers to what life would feel like and what it would look like with our baby in a spica cast. The few blogs we found were godsends to ease our hearts and minds, but we still felt like there wasn’t a one-stop source for information, specifically on babies in spica casts. This realization would later lead to our decision to create our website, Spica Life.
Bridget decided to record our hip dysplasia journey week by week on her blog, goldenfrenzy.net, to update our long-distance family and friends on Londyn’s progress, and to hopefully encourage other spica parents looking for a hint that life is going to be okay, even if your worst fear has happened and your baby will need surgery and a spica cast.
We made it through Londyn’s first closed reduction on a thousand prayers, and she was handed back to us in a bright pink spica cast. And so began the discoveries of how to care for a baby in a cast of this size. We learned through trial and error over the next 18 weeks! (Unfortunately, at her 12 week arthrogram, our orthopedic surgeon felt she would need another 6 weeks in the cast.) In July 2016, Londyn’s cast was removed, and we were finally able to squeeze her again! The cast seems to have done its job admirably, and Londyn gets stronger every day as she is slowly gaining confidence to use her legs. As we continue through the coming series of follow up visits and X-rays, we will see where our hip dysplasia journey leads.
- “Please tell us a about a few highs and lows you’ve experienced along the way”
Highs of our Journey:
– Working with our orthopedic surgeon and Children’s Hospital of Wisconsin. The doctor has been our hero throughout our journey. His calming voice, incredible knowledge, and sensitivity to our needs as parents settled our emotions and fears since the first time we interacted with him. We joke that Londyn developed a crush on him, and he spends time every visit just smiling at her and talking to her, as well as engaging our son in conversation about GI Joes or Superman. He even pulled some strings to get Londyn a purple glitter cast at her second cast change. His dedication to his job and care for our daughter has been fantastic, and we are grateful to have him and his staff to guide us through this journey.
– Getting the cast off at week 18! It was an amazingly new, yet familiar feeling to hold our cast-free baby again. Tears filled both of our eyes as we watched Londyn stare down at her legs, gingerly feeling the dry skin on her thighs before reaching down and grabbing her toes for the first time in 18 weeks.
– Celebrating Londyn’s first birthday. Having a party despite the fact that Londyn was in a cast was so much fun. We took her spica chair to a park and celebrated with our family and friends. Londyn had a blast seeing everyone and being wheeled around in her chair.
Lows of our Journey:
– Complications after Londyn’s first cast change. Londyn experienced complications with her airway, as a result of the anesthesia and full intubation. The anesthesiologist had to come to our recovery room to prescribe additional IV medication achieve a normal airway. This was a very scary time for us.
– Constipation struggles. Throughout our journey, Londyn has had serious constipation issues as a result of being in the cast.
– Finding out the Pavlik Harness did not work. After the good news from her post-pavlik X-ray, we were shocked when Londyn’s next visit showed her hip dysplasia had recurred. We were speechless when the doctor began talking about a spica cast, as we were expecting the visit would bring good news.
- “How did you come up with the spicalife.com website? What does the site do?
Spica Life began with a desire to make how-to videos for topics like bathing and changing diapers in a spica cast. Eventually we decided to just try making one video, then another, and another. The process of creating the videos and thinking about how to present them online gave us the vision for a site containing not only the videos, but all kinds of other information and connections to other resources out there.
The goal of Spica Life is to provide parents just beginning their spica journey with all the information they need to quickly adjust to life with a spica baby, and connect them with other online communities and resources that could answer any ongoing questions they have.
A long term goal of Spica Life is to create a searchable archive of encouragement and experience from veteran spica parents. We have a standard questionnaire for parents to fill out and share their story/advice. These stories are then featured on our site and social media. We are off to a great start with submissions, but there are thousands of Spica Veterans out there! Anyone who has spica experience and is willing to share it with those looking for advice and encouragement can go to www.spicalife.com/share and fill out our form.
- “Whats on the horizon for spicalife.com?”
Our vision for Spica Life is that every time a parent is told for the first time their baby will be going in a spica cast, they will also be pointed to Spica Life in that same conversation. Every time a parent preparing for a spica journey goes to Google and types in “spica cast”, our website is at the top of page one for them as a resource. We want to continue evolving Spica Life to make it as effective as possible, and connecting with as many other resources out there as we can to make that happen. We want to use Spica Life as a vehicle to become more involved in this community, and partner with other organizations to take action to raise awareness and eduction about DDH with parents, families, and caregivers.
EmilyI 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!
Jen Lesea-AmesJen 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!
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!
Karen KerrI’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.
RoseRose Schmidgall is a remarkable young woman; she is a small business owner, a talented writer, photographer and a passionate advocate for hip dysplasia awareness....
Rose Schmidgall is a remarkable young woman; she is a small business owner, a talented writer, photographer and a passionate advocate for hip dysplasia awareness.
In 2014 Rose’s hip dysplasia journey began like many others do, one frustrating misdiagnosis after another. She eventually found relief 3 years later and has made it her mission to raising awareness of hip dysplasia and support the mission of the IHDI.
We are grateful and humbled by Rose’s advocacy, support and kindness.
On July 26th, 2016, I was diagnosed with developmental dysplasia in both of my hips, with small labral tears and FAI in both. Ever since 2014, I struggled with hip pain and incorrect diagnoses until I went to St. Louis in July of 2016 and was properly diagnosed. I had my first PAO surgery on February 22nd of 2017, hardware removal on December 1st of 2017, and have been struggling with uncommon complications since. I dealt with tendonitis in my illipsoas tendon, then muscle atrophy in the glutes, and now there’s a chance my labrum may need repaired, along with my IT band. My LPAO is scheduled for April 18th of this year tentatively depending on the status of my operated hip. My blog www.healthyhipsblog.wordpress.com is where I have been posting about my journey. I am working on writing a book about the whole experience, because it has been absolutely life changing for my faith in God.
I am 20 years old, from a small town in southeast Iowa, and am currently a portrait photographer. My hips interfere with my work, but I love what I do, and I will never stop. I have been going to physical therapy the past three years of my life, and I have had my whole perspective changed through the PAO journey. I have met some of the toughest people. Despite having their dreams crushed and living in chronic pain, they all have Persevered And Overcame. It’s tough though. The late nights of pain, the waiting, the uncertainty, and being misunderstood. We are a unique breed of people, and I hope more awareness can be spread.
I made this shirt because I feel very strongly about spreading awareness for hip dysplasia. All proceeds from the sale of this shirt went to support the IHDI.
In just a week or so, it will be one year from my first PAO surgery, and I have been fighting every single day since then to get my hips back. I have gone to physical therapy for the past three years of my life. I get asked every week by random people I see at therapy, or just out in public about my condition. I tell them about hip dysplasia, pull out my screws from my backpack, and sadly hardly any of the people know what I’m talking about. They might say “oh, my dog has that,” but otherwise, it goes so unnoticed. It’s left in the shadows of the medical world, and needs to be brought to light. Over the past twelve months, I have watched people, and close friends I made through the PAO network, suffer from hip dysplasia. There needs to be a change. Hip dysplasia needs to be something widely known. I’m so determined to make that happen, and if this shirt can help a little, then so be it. My hip dysplasia was misdiagnosed several times and totally unseen until I went to see a fantastic physician in St. Louis. Nothing would ever prepare me for the day I was diagnosed with hip dysplasia.
Here is an excerpt from a book I am writing about my DDH experience.
Have you ever missed a step on a flight of stairs before? To me, it’s like a miniature heart attack that sneaks out of nowhere, taking your whole mind and body by complete surprise. When your foot lands on that vanishing wisp of air instead of a solid step, your heart momentarily skips a beat, and it feels as if the whole world around you screeches to a halt, everything passing you by in slow motion. The adrenaline jolts to the rescue and balance is regained, but your body is still shaking from what almost ended up disastrous.
Take this experience, making it one thousand times more dynamic, and this describes how I felt when I received my medical diagnosis of developmental bilateral hip dysplasia. Instead of missing that single step, it felt like I had just fallen down the entire staircase, and was laying in shock at the bottom.
I sat on the crunchy white medical paper, and still remember my whole body freezing up. Everything became inaudible in my head, and all I could feel was my heart beat slowing down. I don’t know what I said back to the resident doctor who was describing the x-rays of my hip, but I do know my mind was spinning in all different directions. I felt my gut tighten into a large, uncomfortable knot, my muscles tensed, and I tried my best to hold back in the confused tears that were begging to stream down my cheeks. It was a complete blow. It had come out of nowhere.
I had never felt true heartbreak before in my life, but in that one sentence spoken by the resident doctor, I could feel the walls of my heart collapsing into nothing, along with all the confidence I had brought into the room. If my hopes and dreams were visible in that very moment, you would have seen them crumble from my hands to the floor like a hopeless mess. I wanted to scream, I wanted to cry, I wanted to run out of that small room, but instead I sat frozen in shock. Those four words he spoke in that span of five seconds seemed to hang in the sterile-smelling air for what seemed like an eternity, until I slowly opened my mind to accept this new reality for my life.
“You have hip dysplasia.”
Esmé KellyHi! 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:
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.
TaylorIn July of 2012 I started my hip dysplasia journey. Like most hip dysplasia journeys, it has not been easy by any means. Over the...
In July of 2012 I started my hip dysplasia journey. Like most hip dysplasia journeys, it has not been easy by any means. Over the years, I have suffered through many unnecessary tests and many false diagnoses. There were many nights of little to no sleep caused by pain that ice nor heat could alleviate.
When I first started seeing doctors for my pain no one thought I could have adult hip dysplasia; I actually diagnosed myself with hip dysplasia and asked the doctor providing my care at the time if he could check me for adult hip dysplasia as I had completed my own research and had come up with the diagnosis of Developmental Dysplasia of the Hip (DDH). He shut me down and stated that hip dysplasia is “caught in infancy” and that “there isn’t any way that I could have DDH”. I finally convinced that doctor to send me to an outside provider and was referred to an orthopedic specialist.
After seeing a few specialists, I finally had my answer to my pain, adult hip dysplasia. That is an appointment that I will never forget; the doctor walked in the room, took one glance at my x-ray’s and said “you have adult hip dysplasia”. I immediately broke down and started crying in the exam room. I was so frustrated because I was previously told that there was no way that I could have hip dysplasia as an adult. While this diagnosis should have come as no surprise to me since I had completed so much research I was still shocked, frustrated, and scared.
He said that he believed that I needed a periacetabular osteotomy (PAO) to relieve my pain and had sent to me Chicago, IL for an opinion on the course of treatment that was best in my situation. As I did so many times before, I conducted my own research on the treatments and also on hip dysplasia specialists. I ended up also seeing doctors in Boston, MA and Columbus, OH to make sure I exhausted all of my options. I ultimately ended up in Columbus, OH for my hip surgeries.
It took consulting five specialists until I got a correct diagnosis of hip dysplasia and I personally decided on getting opinions from three hip dysplasia specialists to decide on whether or not to have the periacetabular osteotomy surgery since it is such a complex major surgery.
To date I have had the following surgical procedures:
- May 7, 2013
Right hip arthroscopy (labrum repair and capsular plication)
- February 25, 2014
Right hip periacetabular osteotomy
- November 20, 2014
Left hip periacetabular osteotomy
Left hip arthroscopy (labrum repair and FAI impingement removal)
- July 30, 2015
Right hip hardware removal
Left hip hardware removal
Right hip arthroscopy (bursa removal)
- June 1, 2016
Spinal cord stimulator seven-day trial
- July 27, 2016
Spinal cord stimulator permanent implant
- June 5, 2018
Left total hip replacement
Without these procedures, I do not know what my quality of life would be today. These surgeries gave me the ability to walk more than five minutes without being in excruciating pain, gave me the ability to finish college, and also gave me the opportunity to accept my dream job after graduation. Prior to my PAO’s I could not accomplish the simple tasks of grocery shopping or walking around my small hometown university campus. In fact, I dropped all my college classes the semester I was getting diagnosed due to the constant pain.
Even though I have faced MANY setbacks in my recovery due to other underlying conditions, I am so thankful for so many who have put me back together so many times. My amazing surgeon and his staff, along with my pain management doctor who has been able to give me a lot of my life back. While I will always be battling hip dysplasia and pain, I can only hope that someday in the future that ALL hip dysplasia cases will be caught in infancy and that not a single case will be missed.
Due to all the struggles I have personally faced and my own battle with adult hip dysplasia it is so important for me to raise awareness. This is why I have started to put on an annual race in Columbus, OH called the “Hip Hop 5K, Columbus”. This race will raise awareness for hip dysplasia and all proceeds will go straight to the International Hip Dysplasia Institute (IHDI) so they can continue their research for better treatment options.
The First Annual Hip Hop 5K, Columbus will be taking place in Canal Winchester, OH on Saturday September 15, 2018 at 9AM. I would love for you to come out and support the cause! You don’t have to live in the Columbus, OH area to participate. In fact, I have already had several people reach out to me from surrounding states about the race and about traveling to come and participle or volunteer. If you can make the travel arrangements, please come and join us!
Please don’t hesitate to contact me if you have questions about The Hip Hop 5K, Columbus. You can email me directly at: firstname.lastname@example.org
You can find more info about the Hip Hop 5K, Columbus at: runsignup.com/columbushiphop5k
I know there are other stories out there like mine and it is important for others in my position to remember to do their own research, to not give up, and to keep pushing through until they find the cause of their pain; even if it is not due to hip dysplasia. Hang in there!
NancyWe are so pleased to introduce Nancy Muir. A hip dysplasia patient, ultra-marathon runner and a supporter of IHDI. She has set her sights on...
We are so pleased to introduce Nancy Muir. A hip dysplasia patient, ultra-marathon runner and a supporter of IHDI. She has set her sights on running a 100-mile race to raise awareness of hip dysplasia and support for IHDI. We are humbled by her advocacy and support. To learn more & support her efforts please visit: https://miles4hips.com/
I am a 35 year old pediatric physical therapist and post-graduate student living and working in Colorado. I have completed 27 marathons and ultra marathons over the past 15 years and am on a mission to add four more races this year, including my first 100 mile race. Although I have dreamed about attempting the 100 mile distance for over a decade, my hip dysplasia diagnoses put a damper on this pursuit. For the past 4 years I have spent a great amount of time learning about this condition, networking with other people who have this diagnosis, undergoing multiple hip surgeries, and rehabbing, rehabbing, rehabbing!
My decision to return to running after these surgeries has not been taken lightly. The verdict is out on whether or not dysplastic joints (even after reorientation surgery) belong in running, and there are many patients with hip dysplasia and surgeons who would not agree with my decision to attempt this run. But through my patient care and personal experiences I’ve learned that life doesn’t always go exactly as you plan, and I don’t want to live a life of fear and regret. I feel incredibly blessed to be on this side of hip dysplasia. I don’t know the fate of my hips or just how many miles they have left in them, but, for now they feel strong. For many others, hip dysplasia means a life of progressive joint degeneration, pain, and disability, and not everyone with this diagnosis is able to fully return to the life and activities they enjoy. And this doesn’t seem fair.
I want to make my quest to run 100 miles more than just a personal goal. I want to use this journey as a mission to raise awareness about hip dysplasia and to support the International Hip Dysplasia Institute in their mission to promote education, research, and innovation. I invite you to support me and this organization by joining in this effort. Together, we can make great things happen!
AdelineMeet 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.
JessicaMy 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:
And follow us here:
TinaHi, my name is Tina, I am an academic working in the field of psychology at Cardiff University. Currently my research is focused around exploring...
Hi, my name is Tina, I am an academic working in the field of psychology at Cardiff University. Currently my research is focused around exploring and measuring the broader impact of hip dysplasia on patients’ lives. I was diagnosed with Hip Dysplasia when I was aged 20, the diagnosis came as a real shock as I had always been very active, I was involved in competitive Gymnastics from an early age.
I was studying at University when I received my diagnosis, I had been suffering niggling pains in my hip which gradually became a constant dull aching pain and eventually stopped me doing impact sports. I was diagnosed quickly (within 6 months) and I underwent a PAO and femoral osteotomy. The surgery and recovery were very tough and life changing, I had 7 months off work and I eventually decided to change my career and I registered for a PhD in Psychology. Eventually I was able to return to sports and I also trained to be a fitness Instructor.
My PAO lasted 18 years, but as my health began to decline, I became very anxious and worried about going through surgery again. I spent a lot of time researching treatments and surgeons and in 2009 I had resurfacing surgery; the recovery was much easier than I had experienced with the PAO, and I was able to return to walking and sports quite quickly. Ten years later everything is still good, and I could not have wished for a better outcome from this surgery. I am back teaching group exercise and working full time.
My experience has led me to focus my research around Hip Dysplasia as there is very little work conducted in this field which encompasses the socio-psychological and economic aspects of the condition, particularly within the adult population. I work with a group of very committed people and our research spans several areas from measuring outcomes of treatments, supporting decision making in surgery, improving diagnosis and supporting rehabilitation. I hope that this long-term programme of work will support patients with hip dysplasia through what can be a daunting and difficult period in their lives.
To help us, we would very much value your support us in one core part of our work: to tell us your own story of the impact of Hip Dysplasia on your everyday life and wider family; and, to validate an outcome measure that we have developed, The ‘Quality of Life, Concerns and Impact Measure’ (QoLC&I),
- What is the outcome measure?
We have developed a patient-centred, outcome measure which assesses the impact of the DDH, the ‘Quality of Life, Concerns and Impact Measure’ (QoLC&I). The measure is intended to be used by both patients and clinicians in discussions over treatment options and in the evaluation of treatment and post-operative rehabilitation. The measure explores a wide range of patient-significant domains, including pain, impact on exercise and sport, education, family life, social relationships, self-esteem, body image and quality of life.
- What are you hoping to accomplish?
Measuring these concepts will help us to understand more about how DDH impacts patients over a lifespan. This project involves testing and improving the measure so that it is robust enough to use in clinical trials. We also intend to implement the measure in clinical practice to enhance the consultations with surgeons and others so that they are better able to understand the impact of your hip condition on your life and to help you to decide on treatments.
- How much time will it take for me to complete it?
The measure will take 10-15 minutes to complete- it is mainly tick box answers.
- How will my information be used
Gathering the responses from the measure will enable us to understand more clearly about how DDH affects you over the life course. Your responses will be read by members of the research team. We will also use these responses to help us test and further develop the measure. All material will be anonymized to protect your identity.
Thank you for your interest. To participate in this survey please visit: https://cardiff.onlinesurveys.ac.uk/pis-hip-consent
I’d also like to thank the International Hip Dysplasia Institute for supporting this endeavor.
AnnabelleAnnabelle 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.
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;
MaryAt 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!