Samantha’s StorySamantha was firstborn and female, but didn’t fit into any other risk factors for DDH. She was checked before we left the hospital after her...
Samantha was firstborn and female, but didn’t fit into any other risk factors for DDH. She was checked before we left the hospital after her birth, but nothing was found.
At her 8 week baby checkup, the nurse found a clunk. We didn’t really know what this meant. The nurse told us to go to our GP. She mentioned plaster and traction, and referred us to a physiotherapist.
The physiotherapist was lovely and kind. She fitted Samantha with a Pavlik Harness and taught us a few things about the condition. I researched on the internet, but ended up more confused than ever. There didn’t seem to be anybody I could talk to about it, that had been through it.
Samantha’s DDH was so “severe” that it hadn’t been able to be detected at birth; they look for a clunk, but there was nothing to clunk with. She had seemingly no socket.
She stayed in the Pavlik Harness from 2 months old to 8 months old. Every ultrasound visit, every orthopedic visit, every physio visit was a case of feeling hopeful, then crushed. I anticipated it after a while, but it never stopped those feelings.
Finally it was decided that the Pavlik wasn’t working any more, so they prescribed a Hewson Brace. I don’t know what sort of difference this was supposed to make, but I *did* know we could take it off sometimes for baths and for that I was grateful.
She wore the Hewson from 8 months until 1 year old. At that time she was pronounced “good enough to go without.” For a little while afterwards, we had followup x-rays. However, the last one, at about 15 months old, looked no different from a normal hip.
Today, Samantha runs around like crazy and can’t be stopped. She doesn’t need x-rays or followups.
Gabriella’s StoryAlthough I prepared for my baby’s arrival for months, nothing in my prenatal visits, mother-to-be emails, or What to Expect When You’re Expecting book prepared...
Although I prepared for my baby’s arrival for months, nothing in my prenatal visits, mother-to-be emails, or What to Expect When You’re Expecting book prepared me for having a daughter with hip dysplasia. During the routine pediatrician exam shortly after her birth, the doctor noted that Gabriella had a “slight click” in her left hip. He said he would schedule a follow-up appointment at the local radiologist’s office if the click was still present at her one week-old appointment. One week later, there was still a click.
In the two weeks that followed waiting on her ultrasound, I thought very little about her hip. The doctor previously mentioned that often the hormone Relaxin remains in the infant’s system for a brief period after birth and could be to blame for the click. My husband and I bundled her up in early March for a trip to see the radiologist. My worry was minor compared to the anxiety I felt over her being past her due date. The nurse called her name, and we went to the room where the doctor pushed and pulled on her small legs and tiny hips. Then, in a very matter of fact tone, told me my first-born daughter had bilateral congenital dysplasia of the hip (bilateral CDH). Not only was I shocked, the burning sensation of frustration, confusion, anger and disappointment simultaneously welled up inside of me. No one, not one person, in the entire gamut of medical professionals who had spoken with me in the last 8 months had even vaguely mentioned “hip dysplasia” to me. Why not? Why didn’t I know this was a possibility, but yet I am forced to confront it?
In all my fantasies of holding a perfect little baby, not one of them contained a picture of a Pavlik Harness. But at 3 weeks old, the physician’s assistant placed my daughter in one.
The diagnosis of CDH had been confirmed by the head pediatric orthopedic surgeon at the hospital; my daughter had mild dysplasia of her right hip, and moderate to severe dysplasia of her left. When she was fitted and placed in the harness, I cried uncontrollably. I was certain her diagnosis was a direct result of something I had done. After all, I was her mother. I carried her, I nourished her, I rocked her. I had not had dysplasia as an infant, and she was not born breech. Nothing made sense to me. But the reality remained that this condition can affect the children of even the best of mothers. Hip dysplasia is a problem with the formation of the hip joint occurring mostly commonly in first born girls – first born girls just like mine.
Since Gabriella had CDH, she had to wear the Pavlik Harness (which we referred to as her “bungee jumping suit” for other children who asked what it was) twenty-four hours a day, seven days a week in an effort to correct the angle of her hip and deepen her hip socket, the acetabulum. The acetabulum index, or AI, became a focal point for my husband and me. The PA wanted the AI to increase to 63°, an angle number considered in the normal or acceptable range following treatment. Our expectation was that after a few weeks of remaining in the harness, the socket would deepen, the AI would increase, and the harness would be removed.
In fact, the harness was removed and replaced with a foam Rhino brace shortly before she turned 3 months old. A Rhino brace would now allow for Gabriella to return to normal bathing, and the brace fit over her clothes instead of underneath. While it looked like she was wearing a huge foam diaper, a dress slightly larger than she needed made the brace hardly noticeable. While I didn’t mind if anyone saw the brace, I ached when others gawked at her as if she were defective. On the contrary, she was growing like a weed and never seemed to notice her brace. She smiled, cooed and played like every other baby her age. The only adjustment was learning to sleep in the Rhino instead of the harness.
The adjustments as parents were much harder than anything our daughter felt. We learned how to choose clothes that fit, to answer questions of curious strangers, to pray more often, and to find the cheapest gas stations on the 200 mile one-way trip to the doctor. We learned our way around the hospital, and visits became routine. During the bi-weekly appointments for adjustments to her harness and repeat ultrasounds, her hips appeared to progress well. While the right hip had reached normal range, her left was farther behind. The percent coverage of the femoral head increased from 25 to 50 on the left side, putting it in the normal range. However, the AI was still at 58 and needed to be 63. That initial frustration from the very first visit returned. Gabriella needed to remain in the Rhino brace as a last resort before considering surgery as a treatment option.
The surgery the doctor referred to as a possibility at her next appointment was not something we wanted to hear about. Gabriella was only 13 weeks old. The next pieces of information fell on my deaf ears as I slightly when numb. My husband explained it to me later in these basic terms. The brace appeared to no longer be working, and according to the X-ray, a psuedo-acetabellum was forming on the left side. The PA said she would give the information to the head pediatric orthopedic surgeon, but Gabriella would most likely need an open or closed reduction and a spica cast for 3 months. Due to the distance being prohibitive for a quick return visit, she said she would call us in a day or two to let us know the doctor’s decision.
The phone call was not what we had hoped for during those two days. We thought she had been progressing so well and after being in a Pavlik harness for 3 months, she should be fine. We began praying fervently and asking God to heal her, completely or through using surgery. Our meeting with the surgeon was set for June 1st, and the arthrogram followed by closed or open reduction, for June 2nd. The reduction is closed if the surgeon can maneuver the hip into the socket, and open if an incision is required at the top of the thigh to cut ligaments and then move the hip into place. We requested that the X-rays be repeated on the 1st, and then we met with another surgeon. He viewed her X-ray and said had we not told him it was the left hip, he would not have known. He continued by saying based on her physical exam, he felt no subluxation and no dislocation of the hip. Then we talked to the head surgeon. He said based on her history and X-rays alone, he was 90% certain she needed a reduction surgery and spica cast. However, after his exam, his certainty of a cast was 60%, but that neither an ultrasound nor X-ray was capable of showing the femoral head at her young age of four months. Thus, he would perform the arthrogram and if the hip was not stable, he would continue with reduction surgery so she would only be under anesthesia once. He left the room for my husband and me to discuss whether to go forward. I had complete peace about doing the procedure. I knew in my heart God had healed her.
The next morning we headed to the hospital. She stayed fast asleep until time for her procedure. We put her little surgical gown on her as we answered questions, and then I had to hand my daughter to the nurse at 10:00 a.m. for anesthesia. A tube was put down her throat, and she was put on a ventilator. Her small body had to be totally paralyzed while the surgeon injected contrast allowing a clear view of the femoral head. I must say here that the hardest thing I have ever done in my life to date is give my little girl to a nurse, trusting God that she will come back exactly the same while beating back the mental battles of the risks, the surgery, and the potential cast. The surgeon did promise that he would talk to us immediately after the arthrogram to let us know whether the hip required surgery and a cast.
A very long 40 minutes later, he came out and sat down in front of us. He simply stated, “It’s perfect. There is nothing I can or need to do for her. The hip is exactly where it should be.” Of course, I burst into tears realizing that God had given us the miracle for our daughter that we had asked of Him. We had already determined in our hearts that, in facing our giant as parents, we would praise Him if he healed her, and we would still praise Him if he healed her using surgery.
Regardless of what you believe in or do not believe in, this story is a reality for my husband, for me, but most of all, my daughter. She continued to wear the Rhino brace only at night until February 22, 2010, eleven days after her 1st birthday. However, she has been walking since she was 10 ½ months old, and nothing slows her down. She runs, jumps and plays like any child who has not had hip dysplasia. I am so thankful for the treatment she received by her pediatrician, her PA and her surgeon. Whether by harness, brace or a spica, if necessary, hip dysplasia can be treated successfully if caught early. My hope is that each of us will take part in educating the public, supporting other parents and children, and raising awareness of hip dysplasia, for the benefit of all children who will run, jump and play one day soon.
Emma’s StoryEmma was my first born and was breech. My doctor recommended a c-section at 39 weeks, when by ultrasound, we could tell she would be...
Emma was my first born and was breech. My doctor recommended a c-section at 39 weeks, when by ultrasound, we could tell she would be a difficult delivery. When her pediatrician paid me a visit later that afternoon, he informed me that both of her hips “clicked” – actually, they were both freely moving out of the socket. He said that an orthopedic surgeon would be visiting me later and that Emma would be fitted for a harness. I was devastated. He informed me that the key to positive results is to diagnose early…luckily they had.
By Friday morning, Emma was wearing her Pavlik Harness. We were told not to remove it at all. I had to wash around it and change her onesie one section at a time. When we went in for an ultrasound at two weeks (her first ultrasound) it was evident that her hips were still clicking and the Pavlik would need to stay on for at least four more weeks.
At six weeks, the orthopedic surgeon could not get either hip to click at all (and he really manipulated her little legs!). He recommended that she wear the harness for four more weeks. Last Tuesday (week 10) her second ultrasound showed no movement (clicking) and that she had “normal” hips. On Thursday, the orthopedic surgeon let us finally take the harness off. We will be visiting him next month (14 weeks) and then following up periodically until she turns one.
The surgeon said that the two most important things about hip dysplasia are: diagnosing early and persistence in wearing the harness (24/7). There is hope!
Madison’s StoryAfter Madison was born, she was checked out by a doctor who noticed that her hips clicked. He explained what this was and we learned...
After Madison was born, she was checked out by a doctor who noticed that her hips clicked. He explained what this was and we learned that it was similar to what our dog had. We made an appointment for Madison to have an ultrasound at a children’s hospital the following week. When we arrived home from the hospital, we searched the Internet and found out all we could about hip dysplasia.
After visiting our Pediatrician we were referred to a doctor at a children’s Hospital. We learned that our doctor was a well-known orthopedic doctor. The following week, we had our first of many visits with our doctor. He put Madison in a Pavlik Harness, which was supposed to keep her hips in the proper position.
The next few visits to the doctor were hard. Madison would get mad during the ultrasound and kick her hip out of socket. After seven weeks our doctor decided that the harness was not working and said we will wait one month until Madison turns 3 months and then put her in a cast. We were scared. We felt that we were worrying enough, so we decided not to tell our families until after our next visit.
My husband and I spent the next month getting used to Madison being out of the harness and doing all the things with her that they could not do before. At the next visit the doctor gave us wonderful news, Madison’s hip was getting better on it’s own! We were so happy we had a 4th of July party to celebrate!
We still visit our doctor to make sure the hip is growing properly. Despite all that Madison went through, she was not slowed down. Two days after the harness was taken off Madison started to roll to her side.
Meghan’s StoryMeghan was diagnosed with Developmental Dysplasia of the Hip within moments of birth. She had the problem in both hips – the left less severe...
Meghan was diagnosed with Developmental Dysplasia of the Hip within moments of birth. She had the problem in both hips – the left less severe (described as a click) and the right worse (described as a clunk). She was first born, female and breech (three of four higher risk factors). She was frank breech for the last 3 months of pregnancy and delivered by c-section at 39 weeks. We brought her home from the hospital in a Pavlik harness and the doctor gave us 90% success rate.
After a few weeks, Meghan stopped moving her right leg and the harness was removed for 2 weeks until she started again. This went back and forth for a couple of months until the Ortho said it was time to move to the next procedure. The left hip was fixed but the right one was still completely dislocated. A hip spica cast was applied when she was 4 mos. old and she wore it for 10 weeks with a change at 5 weeks. Again, Doc gave us 90% success rate.
Unfortunately, closed reduction failed and she underwent open reduction at around 9 months. It was discovered that there was no abnormality in her hip structure but the socket had filled with fatty tissue and had to be cleaned out. After three days in the hospital, we went home with a new spica and a success rate of 95%! The Ortho was very positive that this would work – his words were that there was no reason for it to fail.
Five weeks later, we went back to the hospital for what we thought was a routine cast change only to find that the hip was still dislocated. We were devasted.
Since Meghan had spent 4 out of 10 months in a spica or harness and could not even crawl, our Ortho wanted to postpone further treatment until she was 1 1/2 years old and potentially walking. Our last hope of repairing the problem is with a procedure called Femoral Osteotomy.
Meghan’s osteotomy lasted 3.5 hours but did not require a blood transfusion (as originally anticipated). Her thigh bone was cut completely in half and the top part (with the ball) was rotated until there was a good fit into the socket. They took a slice from the bone and put it at the top of the socket – this stimulates growth and helps to prevent the ball from slipping out of place. They then reattached the femur (with a pin inside/plate & screws outside) so that the leg was pointed correctly. There was an approx. 5″ incision made across her hip and another approx. 6″ down her thigh. The doctor said everything looked good but he seemed somewhat reserved considering our past failures. Meghan was in severe pain for 2 days and was having some breathing problems from putting a tube in her throat during surgery. It was really tough to see her suffering so much. Within 2 days, she started drinking on her own so they removed the catheter and later the IV. The next day she was acting like her old self again although she didn’t have an appetite. She continued to take pain medication for 1 week.
This cast was shaped different than before and car seats were not an option so we were loaned a funny looking harness from Easter Seals. It straps the child flat on the seat laying down. Since transporting her was so difficult and the cast was so awkward, we elected not to put her back in daycare until after the cast came off. My hubby and I alternated time off from work for the next six weeks to care for her.
Meghan had her cast changed after 4 weeks and was put back in a cast for three more weeks (vs. the expected two). The new cast was significantly different – only her right leg was casted with a 4″ ring of cast around her hips. Her left leg was completely exposed and there was no stabilization bar. It really presented a challenge since all of our gear was designed for the hip spica.
After 3 more weeks, Meghan had her cast removed and everything looked great! The doc said the hip was in place and he saw some normal development/improvement since the last x-ray.
Two weeks later, Meghan went back for more x-rays and was fitted for a brace which she had to wear at night only. The brace was two velcro cuffs with a bar between them and it looked a little like the Pavlik harness. She wore this at night for two months.
At Meghan’s six months checkup post fem. osteotomy she was been deemed “fixed”. She’ll have to be monitored until puberty and still has a plate to be removed but the prognosis is great and we don’t have to see the doctor for a whole year! Her leg is still turned out a bit and slightly shorter than the other but she runs and plays like every other kid her age. The angle and leg length discrepancies will improve with time and should be gone in around 2 years. Each day her mobility and gait improve – most people don’t even notice her hip now. Right now, we’re not even facing therapy and no current prospects of surgery.
Meghan had the surgery to remove her hardware. She was taken back for surgery at 8:45am and we were on the way home by 1:45pm. She was heavily medicated that day but was on ibuprofen only by the next morning. The only problem we had was trying to keep her calm. Meghan’s doc said that we had to be extremely careful for the first 10 days (especially in the first 4). We were supposed to keep Meghan as calm as possible with no running or jumping. He said that he didn’t think a cast was necessary and normal activity was okay. His biggest concern was jumping — he said a jolt to the leg could cause a fracture but that within 10 days the holes would heal enough that we wouldn’t need to worry. We weren’t able to keep her calm since she wasn’t in any pain but luckily nothing happened. We went for her post op and her x-rays showed that all the screw holes in the bone were filled in and weren’t visible at all.
Meghan went for her annual check up: 2 years post femoral osteotomy and 1 year post hardware removal. She had a standing x-ray, physical exam and was observed walking and climbing stairs. On all counts, the news was great. Her doctor was pleased that her leg angle is almost normal, indexes are completely normal and leg length discrepancy has decreased (although its still around ½ to ¾”). We were surprised at how different her right hip (the problem one) looks from her left but the doc and intern said it looked great. Her doctor said that it will take years for the hip to look normal on x-ray but that she was progressing beautifully. At this point, he does not foresee any necessary treatment in the future but will continue to monitor her with annual checkups until at least 8 – 10 years old.
What we thought would take 8 weeks to fix ended up taking several years and multiple surgeries but we are finally there. Meghan’s was the most difficult case her doc had seen in 20 years of practice but even her problem was able to be corrected and she’s now a normal, happy little girl.
It’s been 4 years since Meghan had a femoral osteotomy. She’s been monitored every 3 – 6 months since then, mostly uneventfully. We were always told that the ball of the femur didn’t sit perfectly in the socket but that it was good enough. We started seeing Dr. A around 2 years ago when her original doc and only surgeon (Dr. N) retired and we got what we thought was a false scare. The doc said that the coverage was getting worse but it turned out that the xray wasn’t taken right (we found out several months later).
At her check up 6 mos. ago, the doc said the same thing — not great but good enough and no further surgery appeared to be needed. When we came back 6 mos. later, we got the news that the coverage was getting worse and if we did nothing, the prognosis wasn’t good (arthritis in her teens and hip replacement early twenties). Dr. A was recommending a pelvic osteotomy before she turns 8. We were devastated as Meghan appears to be fine (no limp, runs a lot, no pain) but were holding out hope that the doc was wrong. I started researching docs in Wash., DC for another opinion but took her to a new doc (Dr. K) here in Richmond, VA in the meantime. After a thorough exam and several xrays, his diagnosis & prognosis were the same but he recommended a femoral osteotomy instead. He committed to send Meghan’s xrays to San Diego for another opinion. He did consult with doctors in San Antonio and doctors at Dupont (one of the other places we were considering taking her). He said that they all unanimously agreed that:
- pelvic osteotomy would most likely cause more harm than good by making the hip stiff (a pelvic is what the first doc recommended)
- if anything should be done, it should be a repeated femoral osteotomy
- before we do anything, Meghan should have an arthrogram to better determine how badly the femoral head is seated and if surgery is necessary or would even help
When I told him we scheduled a consult with Dr. B at a Children’s Hospital in DC, he encouraged me to go to that appt. first (before the Arthrogram). He said if I didn’t hear the same thing from there, I should continue with consultations until I felt comfortable with what I’m hearing. Even though the Arthrogram isn’t that invasive (dye injected into the hip than xrayed), Meghan would have to have anesthesia and she’s considered high risk so he wanted me to be sure. So far, I like Dr. K’s approach and the attention he’s giving Meghan’s case so at least I’ve found a new local doc. Unfortunately, the news from Dr. B wasn’t good either.
Even though not recommending surgery isn’t necessarily a good thing since the long term prognosis doesn’t change, I’d much rather make that decision than to put her through anything else that may not work. We aren’t really any better off than we were before but I’m at least starting to get the info. we need to make a decision.
I have told her current doc that I will not make a decision on further treatment for at least 6 months. I need to see another xray that shows the hip getting worse before I believe that it really is. He agreed with this approach.
We are very reluctant to approve any more procedures unless we can be convinced that something will work without doing more harm. All of the docs that have seen her agree that it may be too late and it’s a very frustrating guessing game at this point.
Another 2005 update
It’s been six months since surgery was recommend and Meghan’s xray showed no change or possibly a little better. With Dr. K’s agreement, we decided we would not pursue further surgery unless the hip degraded or Meghan started developing stiffness or pain. We were finally in agreement that no action was preferred since the surgery could make things worse (and put Meghan through trauma that might not even help). The plan was to monitor her every 6 months for changes.
Since our decision (against most medical advice) not to pursue surgery. Meghan’s xrays have been the same or possible a slight bit better.
That news finally changed with her recent visit. The hip position is possibly a little better but the ball of the femur is now rounding out to fit better in the socket. Her doctor is so confident that we made the right decision and she looks good enough, we have finally graduated to annual visits!
I know things could change in the future but it is very gratifying to know we made the right decision 2 years ago, even if it was against 5 doctor’s advice.
Meghan is almost 9 now and is a smart, active, rambunctious child. She just finished a Tae Kwon Do class so I don’t believe she seems to be limited by much. We know there will be somethings in life she can’t do (track) but for now, she’s a pain-free happy little girl with two very happy parents!
Meghan has started experiencing pain in her hip which is preventing her from being active in physical education in school. She had an Arthrogram and MRI performed here but because we have exceeded Dr. K in Richmond’s expertise, I took her to Boston’s Children’s Hospital to investigate a possible Periacetabular Osteotomy (PAO) as a way to delay total hip replacement which would be the next step. Dr. K in Boston said she wasn’t a good candidate and it was a matter of time before she would have to have a right total hip replacement. He said the amount of pain she was in would tell us when it was time.
Well, it’s time. Meghan’s freshman year at college put her hip to the test and unfortunately, she has been in a lot of pain due to walking around campus. The only option is total hip replacement. She is scheduled for right hip reconstruction/total hip replacement on June 14, 2018. The surgery will be performed in Alexandria, VA and she will spend one night in the hospital. We are hopeful that she will make a full recovery in time for the start of her sophomore year in college.
Livia’s StoryLivia had a normal pregnancy and a normal head-down vaginal birth. Livia’s only risk factors for DDH were first-born and female. Everything was normal in...
Livia had a normal pregnancy and a normal head-down vaginal birth. Livia’s only risk factors for DDH were first-born and female.
Everything was normal in the nursery, however, at her eight-week check-up (in 2000) her pediatrician noticed a “click” in her left hip. This was a Friday. By Tuesday, we had an appointment for an ultrasound with an orthopedic doctor. He told us that her hip was “dislocatable with pressure”, meaning that the hip was in but when you pressed it the right way it would pop out. He recommended a Pavlik harness and assured us that this was a very correctable problem and would like to see her in four weeks. After this appointment I did a web search and found more on hip dysplasia with German shepherds than hip dysplasia with humans. Somehow I stumbled onto the e-group website “Hipbabies” that had been started only four days before. At that time I became the third or fourth member. What a lifesaver!
Four weeks later we returned (it was in 2000 and Livia was now 12 weeks old). She had an x-ray done which showed that the hip was completely out of the socket – the Pavlik hadn’t improved anything. In fact, the hip was worse. This doctor then referred us to a pediatric orthopedic surgeon at the local Children’s Hospital. This was a Tuesday and we had an appointment with Dr. W at the hospital by Friday.
I felt everything was moving too fast, but as I found out later there is a certain time frame where the success of correcting DDH is the highest. Dr. W confirmed that the hip was out of socket and recommended either a closed or open reduction. These are types of surgeries and both involve spica casts. We were scheduled for surgery less than a week later. He explained that he didn’t know which one Livia would need until she was actually under anethesia. When she was completely relaxed he would attempt to place the hip back in the socket without making any incisions. If the hip stayed in then he would just apply the cast (closed reduction). If the hip did not stay in then he would have to make an incision into the hip (open reduction).
Because of scar tissue that had already filled the hip socket, the hip would not stay. Livia had to have the open reduction. An incision was made in her inner thigh and the scar tissue was scraped out. After that, the hip bone fit nicely in the socket and a spica cast was applied.
The spica went from her rib cage to her feet; just her toes were sticking out. Livia had to stay in the hosptial overnight but was doing so well the next day that we were able to go home early. She had the cast on for seven weeks and then we went back to the hospital to have the cast removed and see if the hip was stable (2000). The hip looked good and she didn’t have to have the spica anymore but was moved to a Hewson brace. This was to be on for 24 hours a day for the next six weeks. We were able to take it off for diaper changes and one bath a week. After six weeks (2000) the hip still looked good and the Hewson brace was decreased to 12 hours a day. At the end of the year, 2000 (Livia was 10 months old) the x-ray looked great and we were able to discontinue any sort of brace! Livia is now in follow-up and has to return in April, 2001 for another x-ray as the hip could slip back out. After that, she will continue to have follow-up every year until she is 16 years old.
After an x-ray in 2001, Livia’s hips were pronounced “perfect” by her doctor. She is now on yearly x-ray’s and exams until age 16. In June 2001, a baby brother arrived and after several thorough checks and an ultrasound, his hips appear to be normal.
Kailyn’s StoryKailyn was born 2 weeks late following a semi-uneventful pregnancy. I had some minor problems with pre-eclampsia, and as a result was placed on bed...
Kailyn was born 2 weeks late following a semi-uneventful pregnancy. I had some minor problems with pre-eclampsia, and as a result was placed on bed rest 4 weeks prior to delivery. Kailyn was also breech and seemed to be underweight, but this was explained away as an erroneously calculated date of conception. She did turn at about 38 weeks, but she was folded in half, with her feet up by her head. My OB/GYN believed this would work itself out during delivery.
Long story short, my water broke around 9:30 on a Sunday morning and following 12 hours of no progression, Kailyn was delivered by emergency c-section. Come to find out, her placenta had a small rupture for quite some time, explaining her low birth weight of 5 pounds 15 ounces. I thought the worst was behind us… boy was I wrong!
Our wonderful pediatrician was the first to become concerned about hip dysplasia because Kailyn had been folded in half, and I had problems with my hips during the pregnancy. These problems had been caused by an overproduction of the hormone that makes the hips relax for delivery. After an examination 8 hours following birth, the pediatrician confirmed that Kailyn had “loose hips” and fitted her for a Pavlik harness. That would be the first time we were introduced to bilateral hip dysplasia. She then made an appointment for us with an orthopedic surgeon.
We saw the orthopedic surgeon once a month for 5 months. He saw no progress in the development of the sockets, and Kailyn’s hips were both easily dislocatable. Following an arthrogram and a failed attempt at a closed reduction, he referred us to a pediatric orthopedic surgeon at the large children’s hospital in our area. Kailyn was 5 months old.
We arrived at our appointment with the ped. ortho. feeling defeated and scared. As first-time parents we had enough on our shoulders without hip dysplasia, but here we were! The doctor looked over Kailyn’s file and films and said the words we feared most… open reduction. Our first ortho. had mentioned this possibility, but it was in the context that it was rarely necessary. Surgery was scheduled for the following week, and we had no idea what to expect.
Kailyn was in surgery for almost 4 hours. When the ped. ortho. came out to speak with us, he seemed very pleased with how the surgery went. He took us back to the recovery room to see her, and we were shocked at how she looked. Our tiny little girl was completely covered from upper chest to her toes with this huge pink cast. I guess we hadn’t really known what to expect since we had not seen a child in a spica before. It was definitely not what we had expected!
We spent 2 nights in the hospital before Kailyn was released. She was hard to carry (there was no bar between her legs to hold onto), and we had no carseat that she would fit into. We drove the 2 ½ hours home with her strapped laying down in the back seat of our car. What an adventure!
Kailyn would spend the next 13 weeks in the spica. She had one cast change after the first 7 weeks, but other than that everything was smooth sailing. I was so surprised at how happy she was even though she couldn’t roll over or crawl like other babies were able to. We obtained a Spelcast carseat from a local home health agency, so we tried to take her out as much as possible just so she would have some outside stimulation. And I went back to work, so she got to spend time with other children at daycare. She was a very popular girl!
After Kailyn’s spica was removed at age 9 months, she was fitted for a rhino cruiser to be worn at night. We continued to see the ped. ortho. once a month for x-rays to check for progress in the growth of the hip sockets. Before the open reduction, Kailyn’s acetabular indexes were around 40. Following the removal of the spica, her indexes were 36 on the left and 34 on the right. However, that was the last progress we would see.
At Kailyn’s 18 month check-up (9 months following removal of spica), we were told that pelvic and possibly femoral osteotomies would be necessary on both hips. There had been no growth since her first surgery, and it was time to take the next step. Here we go again!
The ped. ortho. gave us a month to get our work schedules sorted out for the surgery. This would be a bigger ordeal than the open reduction, and I would have to be away from work for quite some time. We also needed time to prepare our then wild and free 18 month old for life in “confinement”. There would have to be another spica, and Kailyn would go from weighing 25 pounds to around 35 pounds. We had a lot to prepare for.
The initial plan given to us by the ortho. was to get inside and look at the hips to decide on whether the femoral osteotomy was necessary. Thirty minutes into the surgery, a nurse let us know that the doctor believed only the pelvic osteotomies were necessary. He would work on her left side first, close her up, and we would come back in 3 weeks to do the right side. They said it would be about 4 hours before the end of surgery.
To our surprise, about 3 hours later, the doctor came out to tell us that not only was he done with the left hip, but no hardware was necessary to hold the femur in place. The bone grafts were all the support they needed. He would go ahead and work on the right side that same day.
Another 3 hours passed and we were so excited when the nurse called us to come to the recovery room. Kailyn was very swollen and completely out of it, but both sides were done with no hardware. That meant no more surgeries for us, right? Wrong!
We spent nearly 5 days in the hospital this time. Kailyn had to have a blood transfusion, and it took quite awhile for her caudal to wear off. Once her hemoglobin levels were normal, we were sent home. I thought she would be a bubbly little girl just like after her open reduction. Well, she was having no part of that, and pretty well crabbed and cried non-stop for a week.
We went in to see the ortho. one week post-op. The x-rays told a horrible story… Kailyn’s left femur had dislocated from the socket and the bone graft was lying flat in the socket. Back to surgery we go.
Kailyn was scheduled for emergency surgery 2 days later. This time hardware was used to hold the left femur in place, but the right hip was holding up beautifully. It was good and bad news all in one, but we would still have to have another surgery to remove the hardware. We spent 4 days in the hospital this time, another blood transfusion, and we were sent home.
Kailyn was in the spica for 9 weeks before it was removed. She was now 22 months old. The ortho. opted to leave the hardware in the left hip “just in case”. She would have it removed 6 weeks later with no problems… not even a night in the hospital!
We are now 3 months past the hardware removal. At her recent check-up, Kailyn’s indexes were in the low 20’s on both sides, and the ortho. said those words we all long to hear, “See you in a year.” It’s been the longest 2 years of my life, but one thing is for certain, it was worth every minute of it to now see Kailyn run and jump and roll around just like a “normal” kid.
One year later she had her next check-up. We were sent to x-ray as usual, and with nervousness my husband and I waited for the news from the doctor. He and his assisting physician both entered the room with smiles from ear to ear. Kailyn’s hips were absolutely perfect in every way. Both femurs had wonderful coverage and were completely in socket. She will now be able to do anything she wants to – dance class, soccer, even skating. She’s a perfectly normal little 3-year-old. In fact, the doctor was so impressed with her progress that we will only need to see him every 2 years until Kailyn is about 13-years-old. I can finally breathe a little easier and let Kailyn have the freedom I wish she could have always had. Like the old cliché – we lived happily ever after!
Claudia’s StoryClaudia was born full-term, the second child, of a normal pregnancy. The only problem was that Claudia aspirated meconium while still in utero and had...
Claudia was born full-term, the second child, of a normal pregnancy. The only problem was that Claudia aspirated meconium while still in utero and had to spend 4 days in intensive care. Once home things were fine and not one of the 4 different pediatricians that saw her in the first few days discovered her hip problem.
At her nine months check up I mentioned to the pediatrician my concerns about the way Claudia’s legs, especially the right one, turned out. We were given a referral to an orthopedist, but not a pediatric orthopedist. The orthopedist simply felt her legs and hips with his hands and did not take x-rays. He pronounced her fine and said I was worrying needlessly.
At the 15 months well baby check up I again brought up my concerns. Claudia had been pulling up to stand since she was 9 months old. Yet in all that time from 9 months to 15 months she was unable to take a step by herself without holding on to something. She would cruise around furniture going sideways but never going forward. I found out later that in a child that has bilateral (both hips affected) DDH the inability to take an unassisted step forward is a common sign.
We were referred to a pediatric orthopedist and within minutes of being in the exam room he was able to tell us that he suspected she had CDH (oftentimes called DDH now). Based on his physical exam and all that we told him about the way her legs turned, the inability to walk, etc. he diagnosed her with bilateral congenital dysplasia of the hip with acetabular indexes of 45 degrees in each hip. He took x-rays which confirmed his diagnosis.
Arrangements were made for her to enter the hospital the following Monday for skin traction of her legs. This was on a Thursday. When we entered the hospital, long pieces of a special tape with a metal bar that went across her instep were taped to both sides of her legs from her thigh to her ankle. Over top of this was wrapped ace bandages. The weights were attached to ropes that connected to the bar at her foot. She was attached to the traction for 8 days and was allowed out to eat her meals in a high chair. Other than that she stayed attached to the weights.
After 8 days, Claudia’s ortho determined that her muscles and ligaments has loosened up enough for him to do the operation. Since she was so old when the DDH was discovered, her femurs had been trying to make a hip socket about two inches above the normal spot on the pelvis. In that time the muscles and ligaments tighten up. During the operation the ortho performed an adductor tenotomy. This means that he cut the tendons on the inside of her legs to allow the femur to be placed in the correct spot on the pelvis. He was able to perform a closed reduction because there was no socket at all so there was no place for cartilage to collect. Then he put her in a hip spica cast which went from her armpits to her toes. She was in the shape of a staple.
Six weeks later he changed her casts. It was at this time that he determined that she would need three sets of casts for a total of almost 19 weeks in body casts. One good thing was that each time the casts got smaller- her first cast went to her toes, the second one went to her ankles and the third one only went to her knees, she had spica shorts. After her third cast came off, Claudia’s doctor decided that her acetabulums were still too shallow. Her acetabular indexes were in the low 30’s after 19 weeks of casts. She was put into a walking abduction brace.
Claudia wore the brace 24 hours a day for the first 5 months. After 5 months she was allowed to sleep without the brace, but she was not allowed to stand or put any weight on her legs without the brace. Six weeks after getting the braces Claudia took her first unassisted step. She walked like a cowgirl as we liked to say, but at least she was walking!!
After she had been in the braces for about two months the ortho started talking once again about the possibility of Claudia needing osteotomies. The braces were helping some but there was still a long way to go to get full coverage of her femurs. We continued to have her wear the brace all of her waking hours, but four months after starting the braces it was apparent that no more progress had been made. Her acetabular indexes were 28 degrees on the left and 35 on the right.
2 ½ months later (total of 7 ½ months in the braces), after we had gone for two additional opinions, Claudia had bilateral pelvic Salter osteotomies. In this operation the ortho takes a graft of bone from the rounded hip area. The doctor makes a cut through the bone above where the femur rests and inserts the bone graft. One or two 2-4 inch pins are inserted through all the pieces of bone to hold everything together. Then Claudia was back in a hip spica cast from her armpits to her toes again for 7 weeks.
The osteotomies were not tolerated well by Claudia. The surgery was 4 ½ hours long and anytime she has to have anesthesia for any length she gets very sick. So she was throwing up for two days and she had muscle spasms. The ortho ended up ordering a narcotic to let her sleep which was put into her epidural to help her recover. Once we were released from the hospital, Claudia started to become her old self about 14 days post-op.
She developed an infection in the pins in her left hip. She still has a scar on top of the osteotomy scar on the left side from the infection. Seven weeks later Claudia went back to the hospital to get the pins taken out and also to have the cast removed. Her doctor did not order any physical therapy since he felt that the normal crawling, pulling up, playing, etc. would be enough for her legs.
She started to walk without any help 5 weeks after the pins came out and the casts came off. We were so thrilled, it was something I wondered if I would see. We went back for check-ups every few weeks at first, then every three months, then every six, now she goes for a once a year check-up and will continue to be checked until she has completed her growing. It was a long trying road, but my daughter is now fine. She remembers much of the ordeal, and still talks about it five years later, but she is healed and hopefully will not have any additional problems related to the DDH.
Allison’s StoryMy beautiful daughter Allison was “officially” diagnosed with CDH/DDH at 6 months of age. At birth she had a “mild” click with the left hip,...
My beautiful daughter Allison was “officially” diagnosed with CDH/DDH at 6 months of age. At birth she had a “mild” click with the left hip, but had an ultrasound and was evaluated by an [adult] orthopaedic surgeon who felt that no treatment was necessary. At her following well-child pediatric appointments no click was present and I breathed a sigh of relief. At her 6 month well-child visit to the pediatrician he heard the click again. 2 days later we had another consult with the original orthopaedic surgeon and had an x-ray and ultrasound done. The radiologist – who is a friend of ours – said that the x-ray showed dysplasia. The orthopaedic surgeon still felt it was too mild to require any treatment. I had had it at this point.
I called a pediatric orthopaedic surgeon with whom my husband was vaguely acquainted, and begged him to see us ASAP. He squeezed us in on a Friday before his vacation as a favor. He took one look at Allison’s films and said she needed immediate treatment which meant 3 to 4 months in a spica cast. I could not believe what I was hearing! He delayed his vacation by a day and scheduled her for a closed reduction that Monday. I had 2 days to adjust to the fact that my BEAUTIFUL, good tempered little cherub was going to be immobilized for 4 months! I cried non-stop… I too was very worried about her going under anesthesia, but my husband is an anesthesiologist so he was able to respond to my concerns and calm my fears.
She had the arthrogram/closed reduction that Monday – the procedure went very well. The cast covered both legs from her nipple level to the tips of her toes. We took her home that evening – she actually slept through the night. She was totally FINE with the cast.
She was checked a week later – the hip was stable (staying in place). She proceeded to have 2 more cast changes (for a total of 3 casts). Each was a little bit different in that the hole for defecation/urinitation was slightly varied in size. The last cast gave us back her feet – it was so nice to see them again.
She was in the cast 2 weeks shy of 4 months. Once the cast was removed she went to an abduction brace for 23 hours a day for 6 weeks. When we went for the follow-up visit after the 6 weeks her acetabular angles were measured and we had 18 on right (the unaffected side) and 19 on the left (affected side). So she was taken down to 16 to 18 hours a day in the brace.
We just had another follow-up last week and everything has remained the same so she is down to nights and naps now. So far our outcome has been really great – thanks to a lot of prayers and a GREAT doctor.
Megan’s StoryWhen we went for Megan’s 9 month well baby check up, we were shocked to hear that her pediatrician wanted us to see an orthopedic...
When we went for Megan’s 9 month well baby check up, we were shocked to hear that her pediatrician wanted us to see an orthopedic surgeon. He pointed out her leg length discrepancy, skin folds that were not symmetrical and he could feel that her hip was not where it was supposed to be. I normally take Megan by myself, but this visit, I had my mother with me and I was grateful that she was there. My sister was diagnosed with bilateral DDH at three years old in 1964 so my Mom had some idea of what I was feeling. Our second thoughts were about the problems my sister had and is still having with her hips. She has been through two hip replacements and she is only 42. I did not want this to happen to my daughter.
Two weeks later we saw an orthopedic surgeon who, thankfully, knew he was not qualified to treat a baby and sent us to a pediatric ortho. We met with him and after a few more x-rays it was decided that Megan would have an opened reduction. When the surgery day finally arrived, Megan was 11.5 months old. We were very nervous, especially me. Megan was cruising along the furniture in the waiting room and I kept thinking about my poor baby being in a spica cast for 6 weeks. After they took her away, we took a walk and tried to eat something. After only an hour and a half, her surgeon came out to tell us that the good news was that he only needed to do a closed reduction. Her hip had gone right into place under anesthesia. The bad news was that she would be in the spica for 12 weeks with one cast change. We stayed one night in the hospital and Megan only had two doses of pain meds while we were there. She was wonderful!
When we got home, we put her down for a nap. When we got her up we were surprised to see that Megan had flipped herself over onto her stomach. Her cast only went to her knee on her right leg and she was already starting to learn how to use it. By day four she was pushing herself backwards and within two weeks she was pulling herself around. She ended up learning how to cruise the furniture and a week before the cast came off for good, she was climbing the stairs!
We were very excited to learn the she would be getting the cast off after 10 weeks instead of 12. She screamed the whole time the cast was being cut off because of the noise. (To this day she does not like loud noises.) Her right leg had sores on it, her left leg had no muscle tone and had layers of dry skin. I immediately gave her a sponge bath. It felt wonderful to hug a squishy baby again. We then went to get her Rhino Cruiser brace which she began wearing 23 hours a day. It took a while for her left leg to gain back strength, but before we knew it, she was learning to walk, with her brace. After 6 weeks in her brace her index had gone down, so her doctor reduced her time to 20 hours. After another 6 weeks her index was at 29 and she then only had to wear the brace when she was sleeping. Her next x-ray, three months later, showed that her hip was staying in place, but her socket was still shallow. Her doctor decided to keep her in the brace, sleeping only, and the next x-ray was to be in six months with one check up at three months. It was a long six months, but on Sept. 30, 2002, 16 months after the closed reduction, her hips were pronounced normal. Both of her indexes were measuring at 20. As I was looking at the x-ray, I actually had to think about which side was the bad side because each side looked the same. It was the most wonderful news! Megan goes back for another x-ray when she turns three. Right now, it looks like there will not be any further treatment. We are keeping our fingers crossed.
June 30, 2003 – Megan went for her three year x-ray. As we were waiting, it was so nerve racking. I kept thinking about what we would do if the x-rays did not turn out well. Her doctor came in with the x-rays saying “We have great news.” Her right index was 14 and her left was 17! We go back in a year for her next x-ray. It was such a relief to see her hips looking so good. I asked the doctor to let me see all of her x-rays since April 2001. I took pictures of them so I have a record of her progress and added them to her picture site. It was amazing to look back at the progress she has made in the past 2+ years. Her hips are looking normal! Yeah!
Samantha’s StoryMy pregnancy with Samantha was nothing out of the ordinary. At 7 months, I was at risk for high blood pressure (which I had before...
My pregnancy with Samantha was nothing out of the ordinary. At 7 months, I was at risk for high blood pressure (which I had before I got pregnant anyway) and was put on bed rest for 3 weeks. After that, everything was normal. My ultrasounds were fine with the last one being on Halloween.
Labor for me was quick. Even though Samantha was my first baby, and my husband and I were expecting a long labor – it didn’t happen. My water broke at 2am, by 3:30am I was contracting at 3 minutes apart. I was at the hospital by 4:30am contracting a minute apart and was 1cm dilated. Upstairs in the labor room, at 5am I was still 1cm with contractions coming at a minute apart. About 30 minutes later, they found me at 5cm dilated and a minute apart and decided to have me walk down the hall to my room where I’d deliver. At 5:56am – Samantha was born, all 6lbs, 14oz of her.
A midwife at my OB/Gyn did the delivery. No complications, everything went so smooth that they didn’t even get an IV into my arm (no drugs whatsoever). Immediately after delivery, the midwife checked Samantha’s hips. She said they didn’t feel right, that they were very “loose”. My pediatrician showed up 2 hours after delivery and checked her hips immediately. He confirmed the midwife’s suspicions – Sam had loose hips. It was time for an ultrasound to be safe and confirm what both medical professionals were discovering.
At less than 5 hours old, my husband accompanied Samantha for an ultrasound on her hips. Within a few hours we would know exactly what was wrong. We were later told that Samantha had two dislocated hips. Her hip sockets hadn’t formed properly and we would need to see a pediatric orthopaedist. I began to wonder what could have caused this to happen. According to my pediatrician (and the orthopaedist), this condition is common in first born girls and those of Italian decent (my dad’s side is half Hungarian and half Italian). It’s also common in breech births (which Samantha was not). But before the hips could be taken care of, we had to get rid of the Jaundice.
We were referred to the best pediatric orthopaedist in our area. As matter of fact, he won’t even treat adults – only kids. After two weeks of battling the Jaundice, it was time to find out what to do about the hip problem. First thing to try – a Pavlik harness. It basically went from her back to her toes and kept her legs in a certain position to try to fuse the hip ball and socket together.
After a month, right side fused, left didn’t. The doctor told us we were looking at a Hip Spica cast. Devastated and not knowing anything about this problem, I scoured the Internet and came up empty handed. That’s how my web site got started. My doctor couldn’t even tell me how to care for Samantha other than “trial and error”.
Samantha had to be placed in traction for about two weeks to help the blood circulation to the hip before being placed into the cast for about 3 months. The hip didn’t seem to bother her, as she liked to stand supported and “walk” around with weight on both legs. Nonetheless, we were told that if we didn’t do this now, the chances of Samantha walking later in life were going to be slim and she would be in constant pain.
She was admitted to for overnight observation and sent home with the traction unit to be attached to her crib. A technician came out daily to check her and make sure she wasn’t uncomfortable. Throughout this process, Samantha had “caught on” to the fact that she wasn’t able to move her legs while in traction. We had to periodically take her out for a few hours and give her a rest before putting her back into her crib.
She had to go into surgery to have the cast put on, as the doctor had to nick both tendons to be able to manipulate her legs into the right position. The cast was finally removed after 9 weeks instead of 12 weeks.
When Samantha went for her 12 month checkup, the doctor asked how she was progressing. I told him she was walking and he didn’t believe me. That was until he watched with his own eyes her walk across the room. He told me that she did the impossible, that she must be one very determined child. He told me that she should not have started walking until almost 18 months old.
Today, Samantha is 4 ½ years old. She doesn’t have any visible scars from the tendons being nicked before the cast was put on. She’s in gymnastics twice a week (and I’ve noticed lately that she can really get her legs and hips way out further than the other girls). She swims, runs, rides her bike, and does everything any other 4 year old does.
Taiyara’s StoryTaiyara was born in Thailand. She was breech the last couple months of the pregnancy and delivered by an emergency c-section. When she was born...
Taiyara was born in Thailand. She was breech the last couple months of the pregnancy and delivered by an emergency c-section. When she was born both of her legs were completely blue which promoted the doctor to request she be checked by a specialist. A specialist checked her legs with an ultrasound 3 days after birth. She was diagnosed with DDH – Both legs were out of the hip socket. Pretty scary not knowing anything about this condition, the doctor first tried to manipulate her legs back into the socket, then checked with a ultrasound – No luck, could not get her legs into the socket. The next step was to wear a pavlik harness for a month.
She wore the pavlik harness 24-7 for 1 month, we went for 1 month check-up and the ultrasound showed both sides were still out. The doctor tried again to manipulate her legs into the socket – Again, no luck. We discontinued using the Harness at that time.
The next step was to try a traction method which per the doctor is the last option before surgery… we tried the traction method, she was in the hospital for 2 weeks. Tried again to manipulate her legs into the socket, again did not work. We tried 1 more week of traction in the hospital, still could not get her legs back in the right position. At this point the doctor is now indicating surgery is the next step – We were scared!
We saw a few doctors for 2nd, 3rd opinions and got conflicting diagnoses. One doctor indicated both sides were in the socket – Another doctor indicated both sides were out. We were confused but ended up going with the initial specialist who had checked her since birth. DDH is not common in Thailand, we later found out that the doctor we were seeing is the #1 specialist in all of Thailand for this condition – He has 15 years experience treating this condition and said Taiyara’s condition was the worst he has seen in all the 15 years. Time was running out so we decided to follow his recommendation. He indicated he was 100% confident the hips are dislocated and told us to just follow him.
Taiyara is 2½ months old, she was put to sleep and had closed reduction surgery to release the groin muscle on both sides. After the surgery the doctor indicated he could only get the reduction on one leg and the other leg was still dislocated – Devastating news but I guess one side being in is better than no side in. She had a cast from the waist down to her toes.
We went back in for check up to see the MRI results…..MRI results show both sides are out again – We were devastated again!! The next step was to take her cast off and put her in the traction again for 2 more weeks, then do another closed reduction surgery and try to get the reduction. The doctor said that if it did not work the next step would be an open reduction surgery but she was too young and had to be at least 6 months old.
We tried the closed reduction surgery for the 2nd time. This time when the doctor came out he indicated that he successfully got the reduction on both sides. She had a cast from the waist down and had to wear it for 4 months – every 3/4wks we had to change the cast and check her legs with an ultrasound. The ultrasound results have all been positive so far, each time we checked both sides were in.
She got her cast off – finally! Confirmed again with a MRI and both sides still in. Right now she has to wear a brace for 3 more months – Much better now – we can take the brace off, take her in the swimming pool, give her a bath, she’s starting to roll around a little.
In September we have to go for the first check up since her cast was removed and hopefully she can stop wearing the brace – Will be just in time for her to start crawling…
Riley’s Story“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose...
“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” Romans 8:28 (NLT). I never heard my biological clock ticking away the years loudly in my ear. I had been married to a great man for 10 years, and we were having an awesome time together. I loved my career, and I was progressing nicely up the corporate ladder. I didn’t really have a strong desire to change things when they were going so great. But I also couldn’t imagine us growing old with no family. So my clock sounded more like “now is as good a time as any other, and you’re not getting any younger.” Then, I got pregnant, and everything changed.
I absolutely loved every part of having a baby. The pregnancy went smooth with no morning sickness, so I started packing on the pounds right away. The only snafu was when we found out the baby was a girl. (I just knew she was supposed to be a boy.) The C-section delivery went well, as far as C-sections go. And we had a beautiful baby girl. It was such a very exciting time!! The joy that filled my heart from holding that sweet little girl is truly indescribable.
The morning after baby Riley’s birth, her pediatrician came to the hospital for the customary initial check up. Riley was in the hospital nursery when she did the check up, so we weren’t actually present. The pediatrician came to my room to let me know she had seen Riley, and I will never forget it. In the haze of everything, it seemed so innocuous then. The first thing she asked me was if there was any history of hip problems or hip replacements in our family, because she had felt a slight “clicking” in Riley’s hips. My heart sank a little when she asked that, but she assured me it was not a big deal, and we would look into it further in the doctor’s office once we were released to go home.
At Riley’s first in office pediatrician visit, the doctor still felt the “clicking” in her hips, so she sent us directly to the Pediatric Orthopedic doctor. And that is where it all began. Over the next few weeks, Riley had several checkups with the orthopedic doctor, including X-rays and ultrasounds of her hips a couple of times. He kept waiting and checking in hopes that her hips would tighten up on their own. Since my husband and I had been married, we have been strong believers in the power of prayer. But let me tell you about praying over your child!! Talk about “praying without ceasing.”
The X-rays were showing no improvement, so the doctor finally decided we were going to have to put Riley in a Pavlik Harness. He said we would try the harness out for a couple of weeks, and if she made progress, then she would wear it for six weeks. If she did not show any progress, he said we would talk about that when the time comes because the harness has such a high success rate. I was extremely upset that she had to wear the harness, but I kept praying and believing with all my heart that it would heal her hips and she would be great!
After a couple of weeks in the harness, Riley was sent for another X-ray. The doctor reading the X-ray told me it did not look like the harness was working for Riley. He off-handily mentioned something about surgery and a body cast, which the Orthopedic doctor had not yet gone over with us. I broke down in the X-ray room for the first time through all of this. The thought of my sweet baby in a body cast was just too overwhelming.
Our Orthopedic doctor did confirm Riley would require surgery, which would mean a body cast for 12 weeks. The doctor indicated to us that he would wait until she was six months old to do the surgery. So in the meantime, we just had to wait it out. Riley was in no pain of course from this so it was not a problem. I am not usually an emotional person, but I can tell you that the weight of it all was very heavy. During those months of waiting, I have never prayed so often and with so much determination in all my life. I never blamed God for this. I may have asked “Why?” a couple of times, but either way, He used it to bring me closer to Him. I really got my strength for this from Him. I kept hope through my faith and prayers all the way up to the surgery day that He would miraculously heal her hips, and we wouldn’t have to go through with it.
The day of the surgery came, and the doctor confirmed it was still necessary. In fact, we would learn after the surgery that one of her hips was 100% out of socket and the other was 80% out of socket. At this point, what can I say; this will forever be one of the hardest days of my life. To send my sweet, precious, tiny six month old into surgery; it was difficult. Of course the whole family was there at the hospital for support, and for that I am so grateful. I am usually good at thinking through things in a straightforward way − In a something has to be done kind of way. And this day was no different. I told myself this would be tough, but it had to be done and we would get through it. The surgery took about four hours after they finally took her back, so it was a waiting game. The operating room nurse did call every hour with an update to let me know it was going as planned. Finally, after the surgery was complete the doctor came out to give us his version of how it went. He explained that the surgery involved making an incision in her upper, inner thigh to allow for more lengthening of the muscle, then another incision was made at the inner hip joint area to allow the doctor to go in and set the hip joint in the socket. Then she was placed in a full spica (body) cast. He said everything went as planned and we would be called back to recovery as soon as they had her setup there.
No amount of mental preparation can prepare a parent to see their infant like that in a hospital recovery room. The recovery room nurse was not quite ready for us when they brought us back to recovery to see Riley. She still had all the surgery tubes and equipment lying on her bed. But worse still, they had not yet administered her pain medication and she was awake screaming. Her little face was puffy from the anesthesia and fluids and crying, and she just looked so pitiful. It was so hard for us to see her like that; I just can’t tell you the emotions that were running wild. The nurse was able to help me get positioned to hold her, then she gave her some pain medication. And finally, Riley calmed down. Holding her there like that in that big cast, there was no one else in the world at that moment. I love her so deeply and couldn’t stand to see her go through it all. After she was cleared from recovery, they moved us to a room where we stayed the night.
This is when our smooth surgery ended and the drama of having a child in a spica cast began. The nurse came in to Riley’s room and gave us some bottles and extra diapers and told us whatever we do, do not let the cast get soiled!! Then, she left, leaving us on our own.
The spica cast was open between the legs to allow room for diapering, but certainly not in a traditional manner. Almost immediately, her cast became soiled and no one was able to suggest any diapering method that prevented it from happening. After the first week, her cast was so soiled in the back that her back looked like it was covered in large water blisters, which was essentially a bad diaper rash. This is when I finally had a breakdown. The pain of surgery wasn’t enough, now Riley had a horrible rash from the cast. By the way, did I mention it was June in Memphis when we were going through this, so it was already blazing hot weather? I was worried that the mildew from the soiling would be so bad that the doctor would say the cast would have to be changed, which would require her to be sedated again. We became desperate and determined at this point to get her cast dry and to figure out how to keep it that way.
My husband found this thing on the internet called a “cast cooler”. You wrap it around the cast and attach a vacuum cleaner to it, and it is supposed to pull cool air through the cast. I thought to myself, what a gimmick! So we bought it. Remember. . . we were desperate. Well, what do you know?! The thing actually worked! In fact, Riley loved it so much that we used it on her throughout her entire time in the cast. She would sit for close to an hour with the vacuum cleaner running, pulling cool air through the cast and onto her back and legs. Because of the cast cooler, we were able to get the cast dry. We then used a strong diaper cream on her rash, and with her cast now dry, it healed very quickly.
Perhaps most importantly, we discovered the best way to diaper a child in a spica cast to avoid any additional issues. The secret? Incontinence pads. In fact, after everything was said and done, our doctor said he had never seen a cast stay so clean. However ingenious it was, you haven’t lived until you’ve gone to your local store dragging an infant in a full body cast around in a red flyer wagon, which you’ve stuffed full with boxes of incontinence pads to buy. You can imagine the looks. I think I even laughed at myself the first time. So I did what all enterprising women would do in such situations . . . I sent my husband for the pads. That too got its share of looks — turns out it’s apparently just as rare to see a 33 year old man buying the economy-size package of incontinence pads. Who knew? (I give full detail instructions on how to diaper an infant in a spica cast at the end of this story for anyone who needs to know. The diapering issue was only one of our hurdles we encountered through all of this.)
Before leaving the hospital after the surgery, we were provided a car seat that fits children with spica casts. Frankly, I am glad the hospital did this, because it is not something that even crossed my mind that we would need. In Tennessee, there is apparently a grant program that provides the car seats free of charge. So a state worker brought a car seat to our hospital room and left it with us. It wasn’t anything special, to be sure. It was just a normal car seat with really low sides to allow room for the widespread legs. Everyone assured us this was the standard car seat they give to spica cast patients so I never questioned it.
When it came time to checkout, my husband took the car seat to the car and installed it, and then he brought the car around to the front lobby door of the hospital to pick Riley and me up. One of the nurses rolled us out in a wheelchair and dropped us off at the door. We went to put Riley in the car seat, and immediately we knew she did not fit at all. It was terrible! Riley was in pain from surgery and each attempt we made to fit her in the seat was hurting her even more, causing more screams — all of which added to the anxiety. But it just wasn’t working.
We had no idea what to do. We had already been discharged from the hospital, so we didn’t feel like there was anyone really responsible for us anymore — and apparently they felt the same way because everyone disappeared. The nurse that originally dropped Riley and me off came back with another patient, saw we were having trouble . . . and quickly scurried off before we could ask for help. Meanwhile, a security guard was hovering and harassing us, riding our case because we were blocking the front drive to the hospital. Not to mention that my sweet girl had doubled in weight (15lbs. to 30 lbs.) over night because of the cast. Luckily, God was watching out for us in that moment, as He always is.
About that time, a nondescript man in scrubs walked by and asked if we needed help. We explained our situation, and he immediately went to work helping us resolve the issue. Turned out that the man was some high level administrator at the hospital. The whole thing turned into (what I can now say was) a comical situation. I mean, here we were, discharged from the hospital and technically no longer a patient, but with no way to get home because the car seat is incompatible with Riley’s spica cast. Thankfully, the gentleman ended up bringing in reinforcements — another state worker and two other hospital employees — and, truthfully, not a one of them knew what to do with us.
I mean, it is the law for infants to be in car seats. But no other car seat options would fit Riley. Turned out that the problem was it wasn’t common to have a child that small in a spica cast, and that’s why the standard-issue seat from the hospital didn’t work. The seat depth was simply too long for her. But when they called their legal department to ask if the hospital could risk sending us home with Riley riding in my lap, the answer was a resounding “No!”.
That moment was so surreal. I felt like Tom Hanks in that movie “The Terminal”, where the US wouldn’t let him enter, but his home country wouldn’t let him return. Riley — and my husband and I — was stuck in limbo in this hospital lobby, already discharged, but not allowed to leave. After three hours waiting in the lobby, someone came up with the brilliant solution of getting us an ambulance transfer home. But nothing’s really that simple when dealing with hospitals, who have been sued by attorneys, and who have now paid the hospital’s attorneys big money to write these ridiculous regulations making sure that no one could ever again sue them for that reason — or any other among a carefully enumerated list detailing a parade of horribles that will occur if one dares violate the regulations. The regulation in question apparently makes it abundantly clear that an ambulance cannot pick up someone for transport from the hospital lobby or any other common area (like the front door): they must pick up patients only from a specific, numbered hospital room. Okay, so we’ll just sit in this room over here. Um, no, you must actually be readmitted to the hospital to get one of these specific, numbered rooms, just long enough to notify the ambulance company of the specific, numbered room to pick us up from. And, like getting admitted to the hospital the first time around, that’s not the fastest process in the world. But, we finally made it to a room, and shortly thereafter the EMTs came in and were quite baffled at their atypical assignment for the day. But we finally made it home.
Thanks to the internet, we found the Britax Hippo (Spica Cast) Car Seat, quickly ordered it, and it solved the transportation problem quite nicely. After all of that, which was just the first week, we were able to focus on getting through the summer in the spica cast.
Over the summer, God would begin to reveal Himself to me through this process. My opening verse here says that God uses everything for good, and now I can say I truly, deeply believe that. I know God would never wish this on Riley, but His word promised that if she had to go through it, at least some good would come of it. Through the pregnancy and Riley’s short life so far, I had really prayed so hard that God would make a way for me to be able to stop working and stay at home to raise Riley. I longed for it so badly, and I let it affect my mood and outlook about going to work every day. Because of this situation, I was able to make arrangements with my work to be able to work from home while Riley was in the cast. That alone was such a blessing because the other option was unpaid medical leave. Instead, for ten weeks I worked from home with my mother’s assistance to help care for Riley. During this time, I began to understand why my prayers of being a stay-at-home mom had been answered with a “no”. God really opened my eyes during this time and showed me how much I enjoy my job and working, and that I am blessed with such a great job that is flexible with me being a working mom. This was so refreshing for me. We got through the remainder of Riley’s casts days with no issues. We even had fun with it. An infant in a spica cast is stationary enough to be able to polish her toes — so i did, and let me tell you, that got such a reaction from everyone, even strangers in public. Daddy also loved to raise her up high by the legs, which were rigid because of the cast, and it made it seem to Riley like she was flying, and she loved it. We also joked about the things we were going to say to people because, let me tell you, we were stopped every single time we went into public. At times it seemed to be for sympathy. Others though seemed to gawk. So my husband and I used to joke about telling people that it happened in a bungy-jumping accident. Anyway, we had some fun with it.
But there are so many things that are difficult about this whole process for a parent, and I can’t stress enough: You will get through it! Trust in God, and He will give you the strength for it. There are so many other things I could tell about our experience, but these are the highlights. There are also so many other little blessings God provided, like my health insurance paying for the spica cast car seat we had to buy, friends and family that sent food to us that first week, friends and family that watched Riley some so Tim and I could get out of the house, and the fact that she ended up only having to wear the cast 10 weeks instead of the expected 12 weeks. So look for the good in the situation and you will find it.
Diapering a Child in a Spica Cast:
As I mentioned in the story above, you will need incontinence pads like Poise pads, not the Depends undergarments. Get the long version. Also, you will need two sets of diapers: one set that are about the same size your child was wearing at the time of surgery, and the second set that are the largest size.
First step is to insert the incontinence pad under the cast. Make sure it is centered and you might want to place it so there is a little more length in the back instead of the front. If it’s too long, you may tuck it in the back some up under the cast — but this is not meant to fill the gap entirely, that’s what happens in the next step.
The second step is to take the smaller diaper and position it where you tuck it up under the cast but over the incontinence pad. Be sure to smooth the diaper out as much as possible to cover a maximum amount of area. This diaper should be big enough to stay in place once you tuck it in all around. If the incontinence pad is positioned well and changed frequently, then this diaper should not need to be changed every time since the moisture is almost all caught by the incontinence pad, which fills up the space quite well.
The third step is to place the large diaper around the outside of the cast as you would normally diaper. This diaper is really just to help keep the incontinence pad and small diaper in place. You should rarely need to change this diaper.
Some other useful items in general is a kid’s size bean bag, the cast cooler mentioned above, a red wagon in place of a stroller, and a sling carrier.
Francesca’s StoryFrancesca was born on a Summer morning. Once our baby was in our room, it all become so real. We were spending time bonding with...
Francesca was born on a Summer morning. Once our baby was in our room, it all become so real. We were spending time bonding with our new baby when her pediatrician walks into the room, asks our guests to please step out in the hallway, and our hearts sink. It’s at that moment that you know there is something wrong with your perfect baby. Nothing will erase that moment from my mind.
Francesca was diagnosed with DDH in both hips that very morning. She was to be “triple diapered” until a proper fitting Pavlic Harness could be ordered, in Preemie size. Both hips were dislocated at the time. While they didn’t cause her any discomfort they needed to be put properly in place. Francesca faithfully wore the harness from 5 days old to 3 months old. As new parents it was sad to see our daughter immobile, but yet it became normal to us. We were told we could then wean her out, her hips were “looking good”. After many x-rays and ultrasounds, we were excited to have our baby back. We weaned her and were so excited to finally see some progression in her gross motor skills. She had learned to roll over and sit up with assistance! We were so proud of her.
At 6 months old, Francesca had a follow up appointment with the orthopedic doctor, and after her round of x-rays, we waited, and waited for the doctor to come to our room. Something was not right. The doctor walked in and explained that her hips “looked bad” again, this time the left being worse than the right. However, this required more treatment. We were scheduled for a surgery, while they were hoping for a closed reduction, we were prepared for the very real fact that an open reduction may be needed. Nothing could have shocked us more. Our perfect baby was going to need surgery.
At 9 months old Francesca had a closed reduction done, and was placed in a Spica cast. She did fine, considering that she was suffering from RSV. She was in the cast for 10 weeks total. While in the cast she learned to “scoot” on her back to where she wanted to go. She could roll from her tummy to her back and seemed to be comfortable with her new situation. Not looking forward to her being put under again, we were excited for the cast to be removed. At just shy of 12 months her Spica was removed, and she was put into a Pavlic Harness again. According to the doctor, her hips were now “textbook perfect” and we should be done with treatments. As we slowly weaned her out of her brace, we were again overjoyed at seeing our daughter finally able to sit. The first time my girl was able to sit was at 13 months old. She started to army crawl at 15 months, and was finally walking at 16 months old.
We were excited for her 4 month follow up with her orthopedic doctor. After xrays, they suggested an MRI. Of course we were worried. We went ahead and got it done. We waited for the doctors response. We were floored to hear that the closed reduction and spica, followed by the Pavlic harness only fixed her right hip. Her left was still dislocated, lacking a true socket, and would need further treatment.
During this time we moved and were told to find a new orthopedic doctor in our new city and state. We did right away. At 18 months our stomachs dropped once again. After x-rays and a new doctor visit, they suggested surgery. However, since it is a new doctor he wants to wait and see her progression over the next 6 months. We have her follow up appointment at 24 months, and sure enough, her hip is not better, but worse. The right is fine, the left is almost without a socket. We are scheduled for a pelvic osteotomy. As parents we were devastated. She could walk, run, jump, she was fully potty trained. We had to face choosing when to do the surgery. In the summer? In the winter? When is a good time to choose for your “big” 2 year old to not walk?
At 25 months we are preparing for the surgery when we are hit with yet another bomb shell, at her pre op appointment with her pediatrician, they hear a heart murmur that has never been there before. After a cardiologist visit we are told that Francesca has IHSS, ASD, and HCM. We decide to wait on her heart and go ahead with her hips. Francesca is excited as we pull into the hospital for our “sleep over”. She had the surgery, all went well with the exception of the pelvis breaking completely and needing 2 pins to fix it. She was put into her second Spica cast. Poor thing at 2 years old, fully potty trained… now unable to move on her own. We spent 2 nights and 3 days at the hospital, dealing with her pain and learning (again) to care for a child in a Spica cast. Another specialized car seat, more diapers and depends, and the pain.
It isn’t recommended, however Francesca quickly learned to roll over, scoot, crawl and even walk and jump in her Spica. We had many x-rays to watch her healing. She was doing well, better than expected. After 2 months it was removed. She was scared, but excited. For this removal they did not sedate her, rather cut it off while she was awake. She started walking that very day!
She had a follow up and again we are being told that it is “text book perfect”. We were able to schedule her to have the pins removed. About a month later she had her 4th hip surgery. Again the fears rush in, being a parent. She pulled through just fine and we went home the same day! She had some pain, but was very happy to be able to stay at home this time. The orthopedic doctor said that everything looks so good that we don’t have to return for 6 months! We haven’t gone this long without seeing the orthopedic team since she was born!
We will see from here, however we are hopeful that after all of the “devices” used to fix our daughter, that she is finally able to lead a normal life. Francesca is now 3 years old, she has been in a Pavlic Harness for 6 months, and a Spica cast for another 5 months. 11 months total, nearly ONE THIRD of her life has been spent restricted, immobile. But as first time parents, it all seemed very normal to us! Francesca has a little sister, born with perfect hips. We didn’t realize how much care it took with Francesca, because you just do it… without thinking about how “hard” it is to have a baby that isn’t “normal”. Francesca and her sister took their “first steps” together, after her second Spica cast was removed. It was heart wrenching, beautiful, and I wouldn’t change that moment.
Despite our worries Francesca walks with only a mild limp. She is physically able to do everything a “normal” 3 year old would be able to, with one exception. She cannot walk up and down stairs. But that will come. Since then she has had her first dance class and did wonderful! Thinking back we were so worried that she would never walk, or walk normally, let alone be able to jump, dance, run and play with other kids her age. It was a long road, and I hope that this is the end of her hip surgeries and our journey with DDH, but I wouldn’t change a thing. She is a perfect girl and looking at her you would never know that she had any issues. After this 6 month follow up we will be able to just follow up with the orthopedic doctor every year until she is done growing. We are hoping for the best, as always prepared for the worst.
Now that Francesca’s hip seems to be fixed, we can focus on her heart and her upcoming open heart surgeries.
Update – 2011
Franceca was in for a check up and is nearly 100% “textbook” after her osteotomy, which is fantastic!
Grace’s StoryWhen our baby Grace was born our doctor said that she might have hip dysplasia, it scared us – all new parents want there kids...
When our baby Grace was born our doctor said that she might have hip dysplasia, it scared us – all new parents want there kids to be healthy and safe…we had never heard of hip dysplasia before.
It was the end of Winter when Grace went in for her first x-ray. The doctor told my husband and I that when we’re born, the ball part of the hip joint is cartilage, and usually by 4 months, the ball has become bone. More and more, babies are developing the ball into bone later, even though all of the medical textbooks say by 4 months, it should be bone.
Our doctor has seen kids as old as 14 months that still have not developed the ball from cartilage to bone. Due to the fact that the ball is still cartilage, we were unable to get a clear picture of the socket and how it is positioned on an x-ray, since cartilage doesn’t show up on x-rays. For that reason, we had to go back in 2 months to have another x-ray, hoping that the ball will be bone and show on the x-ray.
Grace had her second x-ray in the Spring of the same year. There was concern that the socket wasn’t deep enough yet. The way the doctor explained it to my husband and I was that Grace is a B+ and she needs to get to an A. Our doctor decided to use a “Hip Abduction Brace.” We were fitted for this a few weeks after and then returned in 2 months for more x-rays and to see if Grace had to keep wearing it.
Our doctor said she might have to wear it for 3-6 months depending on if it is helping… Grace had to wear it 10-12 hours a day. However our doctor didn’t recommend using it at night.
Over the next 1.5 years, Grace has had 3 more x-rays and they all came back showing that her hips had healed!! We were very lucky that she did not need surgery. The doctors we saw were amazing. Grace crawled at 8 months and was walking by 12 months!! She is turing 3 in 1 month and is a very happy active little girl!!
Isabelle’s StoryA Long, Hard Road to a Positive Outcome We hope our story will help other parents who have children with dislocated hips, especially those that...
A Long, Hard Road to a Positive Outcome
We hope our story will help other parents who have children with dislocated hips, especially those that are found after walking age and are difficult to treat. After our daughter started walking, we noticed that she was limping and her left leg looked shorter. We took her to the pediatrician and a dislocated left hip was diagnosed at the age of 13 months.
Our lives immediately changed and haven’t been the same since then. We saw an orthopedic surgeon who sent us to a pediatric orthopedic surgeon who had lots of experience with dislocated hips in children. My husband is in the military and we have another child so that made problems seem even worse. However, we both have a positive attitude towards life and that probably helped us as much as anything.
Of course we wondered how our darling daughter could have a dislocated hip that was not diagnosed earlier. We learned that this happens in almost 10% of dislocated hips even though our daughter had good medical care and regular examinations as an infant. There are definitely cases that come out of the socket after the age of six months. Even countries that have had comprehensive screening for decades are still reporting late cases of dislocation. It didn’t help us to blame anyone and it wouldn’t help our daughter recover so we turned our attention to getting her well as soon as possible. That turned out to be a lot harder than we ever imagined.
We wanted to avoid surgery. A new method was tried called the Hoffman-Daimler method. It’s similar to a Pavlik Harness and successful treatment had been found in Greece. She tolerated it well and didn’t seem to mind but it was hard to get her clothes off and on. Also, it kept her from walking and that was pretty tough on a 13 month old who couldn’t understand what was happening. After six weeks the doctor said that this wasn’t working and she would need the standard treatment of closed reduction and cast treatment. The thought of four months in a cast was frightening but we had no other choice since bracing had not worked.
Note from the IHDI:
When a brace does not correct a dislocated hip, the next treatment options are a closed reduction or surgery involving an open reduction, possibly together with osteotomy. In a closed reduction, the child is put to sleep, and the doctor manipulates the hip joint to get the ball at the top of the thigh bone inside the hip socket. In an open reduction, the doctor surgically opens the hip socket. In an osteotomy, the doctor cuts bone to realign the hip socket and/or the thigh bone. In some cases the doctor tries for a closed reduction, which is less invasive, and if that doesn’t work, will then do surgery. Parents often prefer this approach as well because if the closed reduction works, then surgery is not needed.
Attempted Closed Reduction
At the age of 15 months, our little daughter had general anesthesia for a closed reduction. We expected everything to be fine. It was pretty depressing when the doctor told us that the hip wouldn’t go into the socket because the ligaments were too tight and something was in the socket that kept the hip out.
We were resigned to open reduction surgery even though we had hoped to avoid that. At least the cast would only be on for six weeks after surgery even though she would need a brace for another six weeks. We thought the end was in sight and surgery was scheduled a couple of months down the road. We had some concerns that the bone in her thigh needed to be shortened and the pelvis needed to be cut. That sounded like a whole lot of surgery for a toddler.
Open Reduction and Dega Osteotomy Followed by a Cast and Brace Wear
When she was 18 months old, the date for the surgery had arrived. We were nervous, especially because nothing we had tried up to then had worked. Why we didn’t do the surgery first seemed puzzling but hindsight is 20-20 and we were told that most children didn’t need surgery. We were even more optimistic that this would succeed when we learned that our doctor had some visitors who wanted to watch the surgery and learn how to do it better from watching our surgeon do the operation.
The surgery took about four hours, but we were confident that our little girl was in good hands. After surgery, the doctor said that the hip did have something inside that kept the hip out of the socket. That had been removed, the bones had been rearranged, and the hip was now in the socket. We saw the before and after x-rays and there was a huge difference.
Note from the IHDI:
This child had an open reduction and Dega osteotomy. With a Dega osteotomy, a cut is made in the hip socket, and the bone is tilted downward and out to the side to create more lateral coverage in the hip socket. Pins hold the joint in place as the new bone grows into the place where the cut was made. The child also wears a cast to keep the hip aligned and to provide support.
We were surprised at how fast our daughter recovered. The body cast was a lot more difficult for us than it was for her. We did what we could to keep her occupied and the six weeks passed even though every day seemed like a week all by itself.
She was scared when the cast was removed and her skin looked dry and crusty. There weren’t any sores like we’d been warned, but it took a good bath and some skin lotion to get her to stop scratching. We kept her in a brace for the six weeks although we were allowed to take her out for up to six hours a day. We went back to the doctor two weeks after the cast was removed. Everything looked fine on the x-rays and we were happy to have the big surgery behind us. She started pulling up and walking pretty soon afterwards even in the brace.
We went back for our regular appointments, but four months after her surgery our hopes were crushed when we were told that the hip seemed to be coming out of the socket again. How could that happen? We couldn’t imagine, but we were told that the hip was not completely dislocated so maybe a brace would help keep the hip in the socket until it became more stable. She was fitted for an Atlanta Brace that let her walk, but kept the hips spread so that the hip might go back into the socket.
After another three months of that brace, the hip was farther out of the socket than it had been just four months after surgery. Our doctor had discussed this with other doctors and the only thing to do was to repeat the surgery. He said he would do something different and make the hip stay in this time. Maybe we should have gone somewhere else, but we knew that we had a good doctor with lots of experience so we stuck with him. By now our daughter had spent a year trying to get her hip fixed. She was two years and three months old.
Note from the IHDI:
After the hip is surgically realigned in a child, the hip joint typically grows into a more stable shape as the bones develop. This process of bone growth is called remodeling. If the joint is not stable, and the hip goes out of position, the benefit of remodeling is lost. A Dega osteotomy corrects hip dysplasia in many cases, but unfortunately, in this situation the hip did not stabilize, and the child needed to undergo a second surgery.
The second surgery went about the same as the first surgery except we knew what to expect and so did our daughter. Fortunately, she was still too young to understand but it was hard on us. This time the surgeon said he “was more aggressive” with the bones above and below the hip joint. The joint itself was tightened even more and the cast stayed on for 8 weeks.
She seemed to recover just as well as she had after the first surgery except that the hip stayed in the joint. She limped for almost a year because that leg had been shortened twice and she was pretty weak. Gradually, she regained her strength. A year after her second surgery everything seemed to be fine but she had to have another operation to take out the metal pins, plates, and screws. That went without a hitch and she was only in the hospital overnight. No cast was needed.
Note from the IHDI:
For this surgery, the doctor used a different technique to further correct the shape of the hip socket. He performed a Salter osteotomy. This surgery rotates the whole hip socket on top of the femoral head, allowing more room inside the hip socket. During surgery, the doctor was able to create more room inside the hip socket for the ball, so that it was deeper inside the socket. After this surgery, the socket reshaped and widened to fit the head as the child grew.
She continued to improve and we enrolled her in Karate because we thought that would help her with flexibility, balance and strength. Our precious daughter is now five years old and three years since her last major surgery. She loves karate and the instructors love her. She seems to have all her hip movement. The lengths of her legs have completely recovered like her doctor said it would. Fortunately she doesn’t remember most of what went on to get her hip back in the joint and keep it there. We’ll never forget, but we’ll also remember how great it is to have a healthy child who can do everything like other children her age.
Isabelle is back practicing Karate
Tia’s StoryIn January 2011, my 4 year old (then 3) had hip surgery. She had it on her right hip. The surgery involved cutting a piece...
In January 2011, my 4 year old (then 3) had hip surgery. She had it on her right hip. The surgery involved cutting a piece out of her hip, re-aligning it and then securing it with screws and a metal plate. As you can all probably understand, I was frantic with worry and it was quite a stressful time of life for me and my family.
The surgery went well though and she was put in a cast around her waist and down her right leg. This is a pic of her not long after her surgery.
A year later and she still has the plate and pins in however, she is now better than ever and she has recovered so well that I had to share it with you all to let those worried know that it can and does have a happy ending and to keep positive because there is light at the end of the tunnel!
She is a very keen little rider, loves her horses and does everything that everyone else does, metal plate or not.
So all of you that are new to hip dysplasia and are worried, fret not. YES it’s hard when surgery goes ahead and it’s terrifying to think about but kids are resilient. They bounce back, there IS light at the end of the tunnel and my daughter is living proof that surgery isn’t all that bad.
Ryleigh’s StoryEver since my daughter began walking I have questioned her pediatricians about her waddling gait and both said that she would grow out of it....
Ever since my daughter began walking I have questioned her pediatricians about her waddling gait and both said that she would grow out of it. Fast forward to when she briefly attended a new school about 2 months ago and the teacher asked me on her first day what was wrong with her…. I scoffed of course saying nothing.. Her doctor suggested she would grow out of it.
But that comment haunted me. No one had said anything to me since when she first started walking sooo I assumed that all was fine. It was just how God made her different.
So I made an appointment with a new pediatrician to finally end my crazed idea that there may be something wrong. I even had to convince her to get the refferal for the next level of an ortho eval.
Still when we went I still did not see coming what happened. He sent us down for an x-ray and when we came back up and he looked at them… there was a long silence. When he finally told me ‘Her hips are dislocated’ My literal thought was (oh.. well that makes sense I think… I wonder what he does, just stick her on the table and pop them back in?)
That thought was quickly forgotten as he began to describe to me what the procedure is for this age of a child with this disorder. In fact he has never seen it in a child as old as she is. Every time I think about any of this it makes me feel sick to my stomach. I am having a very difficult time with accepting this and accepting what seems to be the only solution for her which is imminent surgery.
He is at an orthopedic confernce this week and brought her x-rays to consult with others and we are going back in a couple of weeks to discuss a treatment plan I guess.
I am so upset by all of this and don’t know where to turn. Has anyone gone through this with an oder child?
Is there any one that has had treatment later in life as opposed to this young?
I just don’t know what to do.
Kaila’s StoryMy name is Kaila and I was diagnosed with congenital dislocation of the hip when I was just a baby. I had a pavlik harness...
My name is Kaila and I was diagnosed with congenital dislocation of the hip when I was just a baby. I had a pavlik harness put on when I was a baby but this was taken off after a few days as I was screaming in pain. At 18 months i spent 5 days in hangmans traction before having an open reduction, I had a full hip spika on followed by a half one but that didnt stop me crawling around and i had to keep getting the knees on the plaster repaired as i kept putting holes in it !!
This didnt fix me though so when i was 6 i had a femoral osteotomy it was hard to get around and i had to use a little walking frame and a wheelchair….after a year I went back and got the pins taken out.
Over the years i kept getting checks but the xrays showed that my hip was getting worse again so in 2010 aged 11 I had a pelvic osteotomy………….after this op they put me in a half spika from the knees down which was horrible and meant i could only get around in a wheelchair. My xrays were really good after this and Mum said that for the first time I had 2 matching hips!
But again this didnt last for long after about nine months the pain started to escalate and cause me extreme pain. I started to use my crutches again to go to school, and places where I would have had to walk around a lot.
At the beginning of this year I then went for an arthrogram. I had been to the hospital so often now that I nearly new the nurses off by heart. Everytime I was in the hospital for an operation or an Arthrogram I would have a wobble before we went in. But the wobbles were getting bigger, every time I was there someone different would promise me the same thing “Everything was going to be fine and I would be fixed at the end of it” I was starting to get tired of these false promises so like any other person would be I was scared. But I went in and went under general anesthetic and when I woke up I was being wheeled through the corridors to the recovery room. We were met by the Prof where he told us that I could go back to normal but nothing high impact. I was glad I could go roughly back to normal but unfortunately that wasn’t the end, even though I had been given a special jag to take away the pain, I was in agony.
This meant I had to attend hyrdo therapy sessions every week. But again there was no improvement, so unfortunately this left Professor Clarke with no choice. He told my mum and I that he had decided to operate again. He told us that he would perform a femoral osteotomy and a shelf. All we had to do was wait for a date.
I have never been the type of person that just gives up. So when the opportunity came to go to Herm with the school for Time Off Timetable week I took it. So I went to Herm with the school Hopped up the hill on crutches went to the beach and hopped around the whole island and then came back on the boat to find out when I was having the operation. It made me sad but I knew it was for the best, luckily the next two weeks were full of sunshine and fun before I went to Southampton for the op.
On the 6th of August my mum and I had to get up early so we could get the plane. The next day went quickly. We woke up the next morning at 6 so I would be ready for 8 so I could go down to the operating theater. Once we were in the waiting room we were asked some quick questions and then I was taken into the Operating Theater and I was put under local anesthetic. The doctor had decided that he would only do the one operation which was the femoral osteotomy. I can’t really remember much of the week as I slept a bit and the had meds and then I slept some more. I was in a half spica for six weeks and I am now recovering well but I am still not aloud to weight bearing for another six weeks. This should be the last hurdle for me. But we never know………..
Heather’s StoryIn the early 90’s, my wife had given birth to a beautiful baby girl. Two days later, when she was getting ready to be discharged,...
In the early 90’s, my wife had given birth to a beautiful baby girl. Two days later, when she was getting ready to be discharged, the doctor walked in and said I have bad news and just blurted out that our daughter would never walk because she was born with her hips dislocated and then walked out without any help as what to do for our child! Needless to say, we were devistated! Luckily, a nurse then came in and gave us some options and said good luck.
We took our daughter home and made an appointment for an orthopedic doctor to see our daughter. At the appointment, he gave us a traction harness to put our daughter in to try and form her hip joints . After a few months, they realized that wasn’t working so they put her into a cast with her legs spread, again, to try and help her hip bones to form around the joint. The looks we received from people when they saw our daughter in a half body cast was horrifying.
For them to see a baby in a half body cast was basically them calling us bad parents for allowing something that major to happen to our child! We eventually started saying she was born with dislocated hips and their looks of anger turned to empathy. We then moved to Florida where my wife found some great doctors. She learned to crawl with her cast and even pulled herself up onto the coffee table with her cast on!
Finally, after many surgeries and being in traction for months at the same facility that Larry the Cable Guys son, her cast came off! A couple of months later while at home with my daughter, I watched her pull herself up onto the couch to stand up, she was across the room from me and I said come to Daddy. She turned, looked down at the floor, then looked at me and smiled. She put one foot out, then another, leaned forward and more like wobbled than walked but she made it to me! I was brought to tears and crying and so happy that my daughter who they said would never walk, just walked to her daddy! My wife came home and I told her what happened and we cried some more!
After that day, we couldn’t get her still! She grew up to play baseball, twirl baton, run and play just like any other child! Now, she is a young adult who is in graduate school to become a therapist. There is hope people, you just have to have faith! I hope this story helps someone out there that’s going though the same thing we went through. Good luck to all and remember, you’re not alone!
Pam’s StoryI was born in the early 80’s and the moment my mother first saw me she knew something was wrong. When she held me, she...
I was born in the early 80’s and the moment my mother first saw me she knew something was wrong. When she held me, she noticed that my little feet were unusually crooked and that one of my stubby baby legs dangled lifelessly. She voiced her concerns repeatedly to multiple hospital staff but they all assured her that I was perfectly fine (“poor co-ordination”, they said) and that she was being a paranoid first-time mother. I was soon discharged and sent home, despite my mother’s protests.
When I was 3 months old, my mother took me to see another doctor. Just by looking at me, he could tell something was very wrong and arranged for me to be seen at the hospital. There, I was diagnosed with bilateral clubfoot and a completely dislocated left hip.
Clubfoot and dysplasia can occur separately but it’s not unusual to see them together. No one knows exactly what causes either of these conditions…it can be genetic, environmental or possibly even a bit of both. In my case, there is most likely a genetic factor. There are a number of people on my mother’s side who have had either clubfoot or dislocated hips, but only I have the distinction of having both.
Because of the severity of the dislocation and the amount of time that had passed, I was considered a surgical case rather than a good candidate for double diapering and simple foot manipulation. Thankfully, I wasn’t going to need open surgery to put my hip back into place. I was going to have closed reduction surgery, a procedure in which I would be put to sleep and the bones manually realigned. To prepare for this, I was first put in Gallow’s traction (see picture below).
Gallow’s traction is used for two main reasons: it helps increase blood circulation to the hip and stretches the soft tissues in the leg and hip to help the femoral head go back into place. Once I was good and stretched, it was time for the closed reduction. After my hip was maneuvered back into place, I was entombed in a full body cast to keep things stabilized and to allow my hip to grow correctly. During this surgery, the doctors also corrected both feet and casted them into their correct positions. I was literally casted from chest to toes!
I was discharged while still in my cast and apparently, it was as much a buzz-kill for my mom as it was for me. While everyone else got to cuddle their babies, she had to lug around (in her words) a “block of plaster”. Her “block of plaster” was heavy and considerable force was needed to pick me up. (Later, she said that once the cast came off, she was so used to slinging that much weight around that she had to be careful not to accidentally launch me in the air.)
However, the cast was not the end of it. After it was removed, I was then bound in a confusing looking contraption known as a Pavlik harness. The thing consisted of an octopus of braces, velcro, and straps to bind my little limbs in an unnatural and undignified-looking position. My feet, still needing some extra work, were re-set and splinted. It would be over a year before I would be free of all casts, braces, harnesses, and splints – but it was worth it.
By the time I was a toddler, you would never have guessed I was born with anything wrong. I grew into a very active kid and teenager and knew no physical limits. I played volleyball and badminton, rode horses, hiked with heavy backpacks, and I could run for miles. The only thing I ever noticed was that I had an uneven gait, my ‘bad’ leg always seemed to twist inwards a bit, and it always felt a little weaker and stiffer than the other. However, it was never enough to really bother me.
But then I turned 20.
The pain came so suddenly I thought I’d simply pulled a muscle. I was just starting my third year of university and woke up one morning to discover a catching sensation in my left hip accompanied by a sharp pinching pain when I tried to walk. I was 100% fine when I’d gone to bed the night before so I assumed that I must have slept funny or jumped out of bed too quickly and pulled something. After a few days of limping around with no real improvement, I saw a doctor.
This was the first doctor I had seen about my hips in over 17 years. Because it had been so long, the doctor gave me a very thorough examination and sent me for X-rays. I discovered that I had an uneven leg length (which is not uncommon for people with dysplasia), a slightly tilted pelvis, and some minor inflammation in the joint. She referred me for physiotherapy to help strengthen the hip muscles (which compensates for the joint) but little did I know that this was the start of a 9 year journey.
Physio helped at first but as time went on, I’d get a slight dull ache in my hip that would last a day or two and then disappear. I noticed it usually happened right before a drastic weather change and during cold, damp weather so I chalked it up to a little arthritis flaring up and paid it no real attention.
As the years went by, the pain became more frequent and would last longer until one day it just didn’t go away. At 25, I found myself in constant pain and finding it more and more difficult to do everyday things. I sought medical attention and X-rays showed my hip wasn’t in place properly. I was referred to an orthopedic surgeon for further treatment and after a long wait, was sent for an arthrogram-MRI.
The scan showed the cartilage surrounding my joint had been torn away and that the femoral head was misshapen. The surgeon was hesitant to operate due to the underlying dysplasia but finally he agreed when I started getting even worse. During the arthroscopic surgery, he removed all the damaged cartilage and bone and “cleaned things up.” Unfortunately, the surgery failed so it was repeated again, but that one failed also. I later found out that arthroscopic surgery has a higher failure rate in people with dysplasia, but I’m glad I tried it.
A few weeks ago, at age 29, I had my left hip replaced. It has been over 9 long years of progressively worsening symptoms that led to this point but I’m very pleased with my new hip. I am pain-free and able to do so many things I haven’t been able to do in years. It was not a difficult decision to make!
To this day it boggles my mind how no one at my birth hospital caught anything despite several ‘examinations’ by trained medical personnel. I guess this goes to show that you should always follow your gut instinct and follow-up on things that don’t seem right. On that note, I want anyone reading this to know that the reason I’m sharing my story is not to scare anyone. Although unfortunate, hip replacement at a young age is a possibility for someone with hip dysplasia. I had no idea. No one ever told my mother or I what to expect, so that’s why I am an advocate for sites like this one. Looking back, I wish I had asked for a surgeon referral years earlier, back before my hip got so bad it needed replacing. Maybe earlier intervention would have helped – or maybe not. The best advice I can offer (to parents and patients) is to have the affected hip periodically checked (even if things feel ok…changes can be subtle), give physiotherapy a try, and most of all, be your own advocate.
Hayden’s StoryHayden was diagnosed with bilateral hip dysplaysia at birth. At the 6 week mark the right hip had fixed itself, but the left was still...
Hayden was diagnosed with bilateral hip dysplaysia at birth. At the 6 week mark the right hip had fixed itself, but the left was still a complete dislocation. After struggling with the pediatrician in a far remote arctic community, I advocated on my baby’s behalf for us to be sent down to see a pediatric ortho surgeon.
They tried to convince me that we would be able to wait until she was 5 months old to have her hips looked at, I refused to leave the office until they put the referral in. At nine weeks old she was placed in the pavlik, for 8 weeks 24/7. This was devestating, I cried for weeks and wondered what I had did wrong. It was like grieving a loss. I wasn’t able to hold my newborn baby like everyone else around me. It was a dark period in my life….
She progressed and was allowed into a rhino brace for 14 hours a day, then 12, then 8, then every other night. This was over the course of 7 months. We adjusted and it was second nature for us. The next worrisome part was her 1 year follow up, in which she was scheduled for an x-ray, I was a wreck a month prior, with constant worry that her hips were not growing at the rate her body was.
To my pleasant surprise, her X-ray results came back perfect! Such a weight lifted off my shoulders!!! I was probably the happiest I have been in a long time. Her legs have become bowed due to the rhino so we have a follow up I’m a year to see what her legs will be like them. BUT that is nothing in comparison to the journey we just endured. She is a reliant little girl ….
I guess what trying to say is for other hip babies who have been diagnosed and their families is that although the journey may be long and dark. There is a light at the end of the tunnel! All the best in your journeys and I hope each and everyone of your babies has an outcome like mine did. Xo
Yana’s StoryWe had an appointment to meet with a pediatric orthopedist to check on Yana’s hips since she was a breech baby she was at risk...
We had an appointment to meet with a pediatric orthopedist to check on Yana’s hips since she was a breech baby she was at risk of having hip dysplasia. Where there is a problem with the formation of the hip joints. We had been told since she was born to keep an eye on this. She was checked at the hospital and the doctor’s office each time for the “tell tale” sign of a clicking noise in her hips. None of these things were ever a concern for our pediatrician.
He told us to get a routine ultrasound at 3 months to check the development and at that time they did notice that her left hip was not completely in place. He recommended we have a follow up ultrasound to recheck at 9 months.
Time flew by and she was a year already walking for over a month. We took her for the repeat ultrasound and the doctor called to say it was still out of place and she needed to see the orthopedist, which we scheduled immediately.
We meet the doctor and he asks us some questions. The first question was why we were going for ultrasounds and not x-rays? We said that is what our doctor recommended. He then went on to say this condition could not be diagnosed with ultrasound after 9 weeks of age. This is where my sense of panic started to kick in. He looked Yana over had her walk down the hall and assessed her gait. He said he doesn’t think she has it because she walks so well and then added but if she does it will be very bad considering her age. So he sends us into the x-ray room and we held her down for a few pictures.
He calls us out into the hall where he has her images on a large screen. In a sympathetic voice he says mom she has hip dysplasia. I looked at Anthony to see his concerned face on. As he goes over where her bones are and where they should be I feel myself welling up with tears. He said lets start the questions. We ask what now? And he says immediate surgery and a cast. I’m trying to hold it together but I can feel myself getting sick. I told Anthony I have to go to the bathroom and he tells me to sit I’m going to faint. I start shaking and sweating and gasping for air and they wheel me into another room and start putting cold packs on me. Meanwhile Anthony is holding a screaming Yana. After I get myself together the doctor comes back in and goes over all our questions and concerns.
Basically the first less invasive procedure is called a “closed reduction” which she will have to be put under anesthesia and injected with dye as he tries to get her hip as close to where it should be then she will be casted from her stomach to her toes and sent for an MRI to see if this is even an option. If it is she will come home with the cast and we will just keep checking the progress over a period of several months.
If after the MRI it looks like this is not an option that will work she will go back up to surgery have the cast removed and come home to recover and scheduled for an “open reduction” which involves major surgery.
This all happened Friday and her procedure is scheduled for this Thursday. As you can imagine Anthony and I are in complete shock and have been really just floating along these last couple days. I know this is something that HAS to be done. But so many things are weighing on me:
That this could have be diagnosed in infancy and easily fixed without surgery.
This was supposed to be our chance for girl time trips to the park and classes.
She’s worked so hard to catch up to Ethan to be able to walk and now be immobile from the waist down and what this will do to her mentally.
The thought of her being under anesthesia and having surgery is ridiculously scary. We are now almost a year and a half out from her first procedure and she is in her rhino at night only. We go back next month for XRAYS to see if there was enough growth-if not next step is major surgery.
Chloe’s StoryIt all happened so fast. 1 day post delivery and during a routine check, the doctor paused and said “oops, hear that? It’s clicking!” I...
It all happened so fast. 1 day post delivery and during a routine check, the doctor paused and said “oops, hear that? It’s clicking!” I looked over and realized she was maneuvering my daughters hips around. I looked panicked and she assured me “worst case scenario – she wears a harness for a while. Ill give you an appointment with a local ortho ”
I left the hospital and brought my new perfect bundle home and tried to block out the worry until the day of the appt. “it won’t happen to us”. Unfortunately, 3 days later at the orthopedic appointment, the doctor said without hesitation “yep, let me fit her into a harness. We will wear it 23 hours a day for a few months”
I was fine until we got home and called my mother. I was telling her what this weird harness looked like on my perfect baby, and broke down into tears.
Chloe wore the harness all day every day for months. She had ultrasounds every 2 weeks. She had major open wound sores behind her knees that required an ER visit. She never complained – because she didn’t know any better.
The truth is- she doesn’t and will never remember any of what we went through , and in the end – it worked… at 4 months old we weaned out of the harness.
I’ve kept it to remember how lucky I am.
Ill show her when she is older how lucky she was, too.
Thank goodness for the awareness of HD!
Caitlin’s StoryCaitlin was 16 months when she was diagnosed with DDH. I wasn’t happy with the way she walked she had a funny waddle and used...
Caitlin was 16 months when she was diagnosed with DDH. I wasn’t happy with the way she walked she had a funny waddle and used to fall a lot more than she should have. I took her to the GP and showed him her walk and explained she had a funny waddle and when I put her legs together her knees didn’t match. He agreed with me and sent me straight with her up to see a consultant at the hospital. I was with the consultant for 5 mins and straight away asked for an X-ray. Both our fears where confirmed and Caitlin was diagnosed with bilateral DDH. He had explained as she had no sockets it looked like she would need a salter osteotomy on both sides. As soon as she was 18 months he would do the first side.
Caitlin had her first salter in May 2012 and tried to do a closed reduction on the right hip. She was in cast for 10 weeks and . It took Caitlin 9 weeks to walk again but she wasn’t doing to we’ll and I had a feeling her right hip had dislocated again. I called the consultant and I had an appointment to see him the following week. He confirmed what I had thought and Caitlin was scheduled for theatre 2 weeks later. Caitlin had her second salter osteotomy in october 2012. She was in the second cast for 8 weeks this time and was walking before we left the hospital. Caitlin had her last spica cast removed 1 week after her 2nd birthday.
We are waiting for November 2013 (around her 3rd birthday) for our next update.
During all this process Caitlin was such a happy baby and really learned to adapt to her life in a spica cast. 2012 was a very fast year and it went through in a blur. Her consultant was so kind and gentle with Caitlin and ever to Caitlin’s dad and I. We couldn’t have a better service and very grateful he is her consultant.
Naomi’s StoryMy daughter Naomi was diagnosed with DDH at birth (she is almost 3 now). She had ALL 5 risk factors for DDH, she was a...
My daughter Naomi was diagnosed with DDH at birth (she is almost 3 now). She had ALL 5 risk factors for DDH, she was a c-section baby because she was breech, she is my firstborn, female and there is a strong family history of DDH on my side. I was also born with DDH but I was not diagnosed until I was almost 2 years old. I had a funny walk that the babysitter noticed since she had hardwood floors and my parents had carpet. I had 2 surgeries (and wore Spicas for a few months) to correct my hip. I haven’t had too much trouble with my hip it only bothers me if I’ve been standing or walking too long and when it rains. I’ve grown quite used to the pain and its not unmanageable. I will require a total hip replacement when it becomes unmanageable but I’m hoping to put that off for at least another decade (I’m only 27!) I used to love when my mom told me stories about my surgeries and how I had even made friends with an inmate during my hospital stay. My surgeries were performed by Dr. S and I am very lucky to have had him as my surgeon! I remember I had a nurse named Crazy Mary that had bright green eyes and wore a Santa Claus pen around her neck (even though it wasn’t Christmas).
It has taken me a long time to build up the courage to write our story since I’m not sure my daughter is out of the woods just yet. So normally I don’t even like to think about it. Next week we go for her “one year post-op check-up” and I am very nervous. Her hip has made clicky sounds on and off and I can’t help but worry that she will need another surgery. She had her last check up in April 2012 and everything looked perfect on the x-ray but she is 2 and she’s very active so I worry something may have changed between then and now.
Naomi’s surgery was performed by Dr. W in January 2012. She went home the next day and adapted very well to her Spica. She was even pulling herself up to standing within the first week. We had no problems with the cast and it wasn’t as bad to lift her as I thought it would be. She was very mobile the whole time which was a shock to me as I thought she wouldn’t be able to move. She proved me wrong!! She was in the cast for a total of 6 weeks. Looking back the time flew by but in reality, it was the longest 6 weeks of my life! Her cast came off the day after her 2nd birthday and she was walking again by the weekend (just in time for her birthday party!). Since then my husband and I don’t really talk about it…it was a very hard experience to go through as new parents and we just want to put it behind us but as there is no quick fix for DDH this probably isn’t the best coping method, but its just how we’ve dealt with it.
Through all this I’ve learned hip dysplasia is not the worse thing that can happen to someone BUT its also a very long and hard recovery for everyone involved. I have met some other wonderful parents out there whose children have had multiple surgeries that have required pins and traction and hip braces and my heart just aches for them. I have also learned that no matter how bad things may seem there is always someone else worse off than you and that has made me so thankful for what I DO have. I am so blessed to have my beautiful daughter who has taught me so much about life and she’s only 2 years old!
I do feel better for having shared our story and I wish all of you who are going through this experience the best of luck and speedy recoveries for your little ones!!
William’s StoryWilliam was 2 weeks old when he was diagnosed with Bilateral DDH. The first Orthopaedic he was referred to put William in a Pavlik Harness....
William was 2 weeks old when he was diagnosed with Bilateral DDH. The first Orthopaedic he was referred to put William in a Pavlik Harness. However, he did not see any progress. He referred us to Dr. S, Chief Pediatric Orthopaedic Surgeon. Dr. S placed a hip abduction brace on William. This brace showed no improvement. He was 4 1/2 months old when he had his first hip surgery.
The doctor discovered William had very abnormal femur heads. He performed an open reduction and an illiac osteotomy on the left hip. 2 1/2 months later, he performed a pelvic osteotomy on his right hip. William wore a spica cast after both surgeries. His hips were still abnormal but were corrected as much as possible. Our doctor said William will need a total hip replacement when he is an adult. When Williams second spica cast was removed, his leg would not stretch out. Physical therapy did not work. His therapist said only surgery could release it.
When William turned 2, he started walking. His gait was wobbly due to his contracture. We continued check-ups on a yearly basis. Our doctor did not want to operate on William until he was older. During this time, William became an extremely active child. His hips did not keep him from the activities he loved. He actually developed strong upper body muscles and could do many pull-ups and push-ups. He played t-ball, was on a football team for 2 years, and he has been on a wrestling team for 4 years (he is a very good wrestler). His coaches love how determined and strong he is.
He also makes good grades in school and is very social with his friends. In 2012, I discovered William was having more problems with walking. He was falling a lot more than he should have and would get very tired. I also noticed his right foot was turning inward and he was becoming less flexible. Our doctor said surgery could help him. He performed a Right Femur Varus Derotational Osteotomy and released most of the contracture.
After the surgery, William went to physical therapy 3 times per week. William went from using a walker, to 2 crutches, to 1 crutch, to a cane. The surgery gave him more flexibility and his leg is straighter. He is still wobbly. Hopefully the cane will train his muscles to minimize the wobbling. He still has to strengthen a few more leg and hip muscles and will forever continue stretching exercises. Currently, he is complaining about knee pain and we will be seeing our doctor again soon.
I hope William will not need any more surgery up until his total hip replacement. However, we can only take it day by day. He is a wonderful, smart, active, and social kid. I am grateful he has a lot of support from his friends, family, and teachers.
Kalynne’s StoryAs first time parents, we were excited and looking forward to having our baby girl in a few months, so when my husbands niece was...
As first time parents, we were excited and looking forward to having our baby girl in a few months, so when my husbands niece was diagnosed with Hip Dysplasia at a couple months old, we were a little concerned it may be hereditary but didn’t think too much of it for our baby. We fully expected an adorable healthy newborn and lots of cuddle time (no one in my family had ever had any hip dysplasia issues, nor his until then that we knew of, and we’d never even heard of Hip Dysplasia in babies) … Very long story short our daughter was born 12 days overdue, big (9 lb, 14 oz), but seemed PERFECT! She was NOT breech, only risk factors for HD she had were, firstborn girl, and possibly it is hereditary since her cousin had it.
They checked her hips at the hospital and said they seemed fine! We were SO relieved and so we went home, 6 days later my mom took Kalynne and I to her first check up. Our pediatrician checked her over, commenting on how healthy and beautiful she was, then moved to her hips, I noticed he was spending a lot of time there and had a frown. I immediately knew something was wrong and he then showed me that her left hip was dislocating… I remember like it was yesterday feeling so overwhelmed but trying my best not to just cry, keeping a brave front up since I was with my mom… But postpartum hormones, plus that was NO fun, I kept telling myself “it is NOT serious, he said it dislocates but it’s not dislocated”… I knew nothing about it so I basically lied to myself to keep my hopes up… I did NOT want my baby to have to have surgery…
We were referred to a pediatric orthopedic surgeon (one who had thankfully just in the last month moved to our city). Back at home, and after my mom left I remember I laid her in her swing and dissolved into tears… I cried for several days straight (and cried more over the next several months). I felt like I was being SO cheated, and everytime I looked at my baby or held her I just hurt for her and felt so sad for the fact that we prob just had a couple days to cuddle her and enjoy her newborn phase without a brace or cast… Only Hip Dysplasia Parents can understand this but I felt a feeling of “loss”… it didn’t seem fair and frankly I got depressed very quickly (and I had NO normal postpartum depression, I actually was SO happy til that 6th day).
Two days later my husband was working, so my mom took us to our appointment where the Ortho took just a couple minutes to diagnose her with Bilateral (both hips – though I didn’t know that at the time) Hip Dysplasia. He placed her in the Pavlik Harness and set us up for visits every two weeks, and Ultrasound in 4 weeks! At the Ultrasound we found out it was both hips, and more serious than we thought. I was feeling VERY scared because I knew the Ortho didn’t want to try the harness for more than a couple months before they would move to surgery. So we continued our 2 week checkups, and 4 weeks later went for our second Ultrasound. Her hip had improved, in fact the right hip was considered “good” but the left was still not there… I had hope but it had been 8 weeks.
After the first couple weeks our baby girl figured out she didn’t like being in the harness 24/7, she would scream hours every night due to colic which was made worse due to the fact she couldn’t kick her legs… And she was the crabbiest baby ever! I cried with her most of the time! We were getting SO weary of this deal… I wanted to enjoy her first few months but instead I just wished for her to be older so we could be done with the hip stuff. We had another Ultrasound where they FINALLY told us her hips looked great despite the odds. That is when it hit me that we were SO blessed, our Ortho looked at the Ultrasound, shook his head and smiled and said “you better be thankful for this miracle, I have NEVER seen hips as bad as hers get better with just a Pavlik Harness, much less in a couple months”… she should of had to have countless surgeries!
My prayers were being answered, she was being weaned out of the harness and she could come out of it for 12 hours per day! That was the happiest day I had had since she was 6 days old. She had been in the harness about 10 weeks, although that doesn’t sound long, when you are in the situation every day is a hardship… it feels like a year. At one point I didn’t think I could do it any more, but FINALLY I saw the light at the end of the tunnel! For the next month she slept (with plenty of fits, of course) in the brace until we finally let her out completely!
They told me she would probably be delayed several months in motor skills and may not walk til 2 yrs old. But she started rolling over at about 3 months old (something pavlik harness kids can’t do is tummy time so we started that at about 2 months old when she was out of her harness during the day), sat up well at 5 months, crawled at 7 months, and pulled up at 9 months, started cruising all over around 10 months, taking steps at 10.5 months and walked at 11.5 months! She was into everything by 12.5 months and now at almost 17 months old she is a normal and healthy little toddler! Running climbing and playing like any other toddler…
There is hope for your HD baby if you are going through this situation… and I am so thankful for this website because I researched and couldnt find much on HD. It’s not very common, I guess, around here? It was very informative and supportive and helpful for me to see success stories and also know our case could be much worse! We are now expecting a baby boy, and though I know statistically we have a low chance of him having it… it almost makes me panic when I think about having to go through that again. It was a dark time in her little life, I honestly try to not think about it and when I do I feel like crying and feel sick. I REALLY want to be able to dress my baby normally, hold him normally and cuddle and ENJOY him being tiny instead of wishing it would pass! No one but we HD mommy’s can understand, I know, but at least we do and I know if our little boy has HD also then I can come to this site for support! Thanks for reading and I hope it offers encouragement! =) The first pic is when she was first put in pavlik, the second is at 2 months old, and the third is right after we removed the harness! =)
Emma B’s StoryBrent and I went to the appointment excited and nervous. We met with the nurse who gave me all kinds of pamphlets, prenatal vitamins, and...
Brent and I went to the appointment excited and nervous. We met with the nurse who gave me all kinds of pamphlets, prenatal vitamins, and a folder of what to do and what not to do. Brent and I briefly met with our doctor prior to our first ultrasound. At that time Brent made a joke saying, “ok doc, tell me there is only one baby”. Keep in mind, we had never met this doctor prior to this day. The doctor took us to a small room with a kind of, sort of outdated ultrasound machine. I remember laying on the examining table and Brent leaning on the counter in front of me. The doctor proceeded with the exam and told us that we were having twins. Brent said he had some thought and had grab hold of the counter. My response of course was “holy cow” and started crying. The doctor said she would give us a few moments but would like to take us to another room that had another ultrasound machine that could look at the babies in more detail. I got myself together and we both met her in the other room. The doctor again proceeded with another exam. I remember seeing the movement on the screen with the two babies. Brent, of course jokingly said to the doctor that there better not be another baby. The doctor looked at Brent and looked at me and said, “Yes, there is one more”. We went from having two babies to three babies all in a matter of minutes. No fertility, no drugs, nada! All natural. I started to cry again. I also felt bad for the doctor. She went from not knowing us to knowing us in a matter of an hour. She further explained to us that we all should be “cautiously optimistic” during this time and that she could follow the babies up to a point, I believe to 20 weeks. We would then need to move to a doctor at hospital that specialized in high risk for the remainder of the pregnancy.
We left the doctor’s office thinking “ok, we are going to have to go from my little Nissan Sentra to a big ol’ Suburban, a house to accommodate us, no job because we wouldn’t be able to afford daycare, and who the heck is going to help us with three babies”. A lot to digest and we haven’t even eaten lunch. So, I became a weekly guest to my OB/GYN due to the fact I was considered high risk. On week 14, I went in to visit my doctor and we found out that the two babies sharing the same placenta no longer had heart beats. The single baby was fine, heart beat great, and everything else I heard was blah, blah, blah like the teacher from Charlie Brown. I remember seating in the room all by myself and thinking, “this is going to be ok” however it wasn’t. I reminded what Brent’s dad said to me, “God is not going to give you more than you cannot handle”. I kept thinking that. I went out to the car and began crying and couldn’t stop. I called Brent, where he was on the way to a company meeting. He immediately turned around and came home. That day was probably one of the worst days I have ever experienced. Brent was great about consoling and he was a much needed distraction. To this day, I have a hard time listening to the song by Rascal Flatts, “Bless the Broken Road”. This song was playing on the radio that day and the words are so powerful but meaningful.
Week 17 we were scheduled for a thorough ultra sound examination at the Women’s Services that does genetic counseling. We met with a wonderful woman who explained the different tests, how the tests score, and our options. Brent and I still laugh about that day because we honestly did not have a clue about any of the procedures or the extent of the people that were involved. The U/S tech started the exam like the multiple other exams that we have had. She told us that we were having a girl which is always exciting to hear about the sex of the baby. She further explained to us that the organs, head, eyes, etc… looked great. The tech finally looked over the limbs and began to reposition my belly and the probe. You could tell she was interested in one area of the baby. The tech left the room and came back with not only the woman who explained the procedures to us but also another tech, a student, and a doctor. We had approximately 7-10 people in the room including us. Everyone was so interested in the ultrasound monitor that I couldn’t see what they were looking at. I actually got a little upset because I could not see my own child. Basically, what they found they did not really have an answer for us. They told us that our child would have a “syndrome” but they were not sure of what type of syndrome. The doctor explained that Emma would be born with both her legs “reversed”. We hadn’t had a clue what they were talking about. Brent and I both asked several questions however, no one had answers. We went home and researched everything we could. Brent and I met with a Pediatric Orthopedic Surgeon who later became someone far more important in our lives that we could ever imagine. Unfortunately, at that time, no could tell us the extent of Emma’s legs or anything. The Pediatric Orthopedic Surgeon told us to be “cautiously optimistic” that we would have more answers once she is physically here and they could actually physically see her. Talk about another blow to the stomach. And that phrase, “cautiously optimistic”, I honestly hated those two words. I use to say that they taught those two words in medical school and nothing else.
November 22, 2005, 3 ½ weeks from our original due date, Emma Catharine was born. She was born with bilateral hip dysplasia and her right knee dislocated, going in the opposite direction. Emma was immediately given a splint to keep her knee straight and this is where the multiple visits to the doctor’s office began. At age 3 months, Emma under went three surgeries to correct both hips and her knee. On the right knee, they actually had to go in and cut part of the muscle to release it in order for her knee to position itself correctly. She then wore a spica cast for 6 weeks to help set her knee, femur head (ball) and socket. I never thought I would see the day that they took the cast off. From then on, she had to wear a brace in the evening while she was sleeping. I cannot tell you how many braces we went through (measured and fitted) because at that point she was beginning to grow like a weed. She soon figured how to maneuver her legs out of the brace while sleeping and turn over on her stomach to sleep. We began physical therapy in order to strengthen her right leg/knee and to stimulate the growth of the hip bone and socket. It took Emma a lot longer to do more of the motor skills that a normal baby from 6-24 months could do. She actually did not seat up by herself until she was 9 months old. Emma did more of the “military crawl” versus crawling on all fours. She would stand holding on to the couch or table but would not put a lot of pressure on her right leg. Emma was given a walker with wheels to learn to walk. And let me tell you, with the walker, she would chase the dog around the house, laughing, and carrying on like a normal child. She did not know anything different and neither did we. She was a happy baby.
And at age 22 months, she began to walk on her own. She still needed therapy to strengthen her right leg/knee. At the time, she was still having difficulty to walk up and down the stairs, running, skipping, jumping etc… She relied on her left leg a lot for balance. Emma still cannot sit “kris kross applesauce” however, she does not let that affect her. Every once in a while, she talks about her “boo boo” (scars) and tells us a story about them. I know she won’t be a track star nor will she be in the Olympics for track and field however, I do know that she is very happy little girl who loves to dance.
I can honestly say that if it wasn’t for our doctor and therapists, I wouldn’t have known what to do. They were very honest with us and gave us hope. They did not give us any false pretenses especially during her procedure. I can now say that I believe in the 2 words, “cautiously optimistic”. And I believe in families helping families.
In August 2011, just before entering Kindergarten, she had another procedure. They adjusted her femur head (ball) and socket slightly up by placing 2 pins and a bracket for approximately 7 months. In March 2012, they went back and removed the pins and bracket. Currently, she is doing really well from the procedure and they are monitoring the placement of her right hip/socket every 6 months. Emma was able to take the pins and bracket (in a sterile closed bag) into her Kindergarten class for show and tell which, according, to Emma and her friends, was “cool”. Emma is now 7 years old and in 1st grade. She enjoys biking, swimming, tennis, and collecting seashells.
January 2013, we went for our 6 month checkup and the femur head (ball) slightly away from the socket. We are currently doing exercises in the evening to strengthen the muscle in her right hip/thigh. June, we will revisit the possibility that another procedure may take place.
Lynnon’s StoryOur daughter Lynnon’s hip dysplasia was discovered by her pediatrician during our hospital stay at her birth. The doctor was conducting the routine infant examination...
Our daughter Lynnon’s hip dysplasia was discovered by her pediatrician during our hospital stay at her birth. The doctor was conducting the routine infant examination and mentioned that her left hip was clicking. He said that sometimes breech babies are born with loose hips. Lynnon had been breech for the entire third trimester of my pregnancy. I tried many techniques to try and get her to turn, including ice packs, elevation, and even the external version procedure. She was born by C-Section and it was apparent why she was unable to turn… she was a frank breech. Her feet were literally next to her ears, legs stretched out in a ‘pike’ position, and her bottom down.
Lynnon had an ultrasound done that same afternoon, and it showed that both of her hips were dislocated. I was shocked. I was also extremely worried about her comfort, though I was reassured that she likely felt no pain at all. We received a referral to a pediatric orthopaedist for further consultation on her hips. At 6 days old, we traveled the first of many three hour trips to meet her pediatric orthopaedist. Upon her examination, Lynnon was fitted with the Pavlik Harness. We were told she was to wear it 24 hours a day, though we could remove it for quick baths and to change outfits if needed. The straps on the harness were marked so we knew the correct positioning, and we were shown how to remove the harness without changing the abduction straps. The doctor said the harness had over a 90% success rate for infants, and she would wear it for approximately 12-18 weeks.
I had anticipated this news after doing some research about hip dysplasia. The harness seems terrifying at first. It is an unsightly and unnatural looking contraption. I was dealing with the intense hormonal change of giving birth, and the fact that there was something ‘wrong’ with my precious baby, which intensified the worries. The idea that she couldn’t be a ‘normal’ baby and had to wear this harness seemed devastating at the time. I knew that we were fortunate because there are so many other illnesses and issues that infants deal with, and our situation was relatively minor. I had a dear friend whose baby was born with a heart issue, and had been flown by helicopter in the first weeks of his life to have open heart surgery. I knew I should count my blessings for Lynnon’s overall health, but it was still hard to cope.
I cried the entire three hours for the first trip to see her specialist, and could barely speak to the doctor without sobbing. I was worried sick that the harness was going to hurt her, that we wouldn’t be able to breastfeed, etc. etc. Though I recognized and knew it was incredibly shallow, I found myself being upset that Lynnon couldn’t wear many of the cute outfits she had received as gifts. Pants were out of the question (and it was the middle of winter), and her hips were kept at such a wide angle that the only comfortable and non-bulky clothing for her to wear were onesies. I had been comforted by others who had been through the same treatment that the time goes by so quickly, and we would barely even remember her having to wear the harness. At the time, 12-18 weeks seemed like an eternity and it was hard to believe them.
I would say that the fear and anxiety about the harness wore off within the first week after her fitting. Life in the harness was never as dramatic or devastating as I imagined. Lynnon never complained about the harness. After the first week, we were pro’s when it came to weaving her diaper through the harness, or taking it off and putting it back on quickly for changes or baths. Lynnon was a little ‘bulkier’ than the normal non-harness baby, but we were still able to nurse, cuddle, and play. After a couple weeks, we were even able to make light of the situation and would sing ACDC’s “Back in the Saddle Again” each time the harness had to go back on.
As we got into the weaning stages, I even think that the harness was comforting to Lynnon at times. Putting it back on at night was almost like her way of being swaddled, or being put in a familiar position. The only negative suspicion that I had regarding the harness was that it may have made her a gassier baby, as she was not able to freely kick and move her legs to ‘work out gas’ and aid digestion. But, her gassy period lasted less than three weeks, so it may have simply been her age and immature digestive system, and a stage she would have gone through regardless.
Now, I am so thankful for the harness . In fact, I find myself thinking “I LOVE THE HARNESS!” At Lynnon’s two week follow up, her hips were no longer dislocated. At her five week follow up, her hip angles showed great improvement and she was cleared to be out of the harness for four hours a day. At her eight week follow up, both hip angles measured sixty degrees and we were cleared for twelve hours per day out of the harness. She continued to wear the harness only at night time until she was 14 weeks old, when we were officially cleared. The effectiveness of such a simple device at correcting her hips has been fascinating. We are so thankful that we have been able to avoid more invasive treatment such as surgery and a cast. Lynnon will continue to have follow-up visits with her hip doctor until she is five years old, and we have been encouraged by other success stories to believe that she will be an unrestricted, un-phased, and un-stoppable child.
RI’s StoryMy son RI was diagnosed with hip dysplasia the day he was born. In retrospect it was foolish how faulty and embarrassed that made me...
My son RI was diagnosed with hip dysplasia the day he was born. In retrospect it was foolish how faulty and embarrassed that made me feel, as did the whole harness process that came with it. I had had terrible hip pain during my pregnancy and am unsure if this was caused by similar hormones in my system or was just a weird coincidence. Recently my friend’s baby was similarly diagnosed and I was thrilled to see that the harness used now is so much more comfortable looking than just a few years ago.
We went through six weeks of full time harness and I forget how long he wore the harness at night. After that he had follow up visits until he was about 18 months old. He was diagnosed with hip clicks and the pediatrician continued to check for them regularly as did the orthopedist after he was out of the harness but he has done really well.
He’s almost sixteen now. The doctors said to be aware that he could be at risk for arthritis in that hip starting in his late teens or early twenties, but so far, no problems. He’s sixteen now and a second degree black belt in taekwondo and has had no residual effects.
I know there are a million more stories like his, that his result is not unusual or remarkable. I didn’t even particularly share this story because it is more of an encouragement than anything else you’d find in a random internet search. I am sharing this because I want parents to know that those feelings of inadequacy and embarrassment at the beginning are normal and totally unfounded. We’ve had one more child by birth since and another by adoption and the real blessing of our first born’s “special need” was that we were open to special needs adoption, which is how we got our wonderful third child (who also turned out to be healthy after a few infant bumps in the road.) Fear not, parents, this too shall pass.
Sophie’s StoryMy daughter Sophie was born full-term and very healthy, weighing in at a whopping 9 lbs, 2 oz. She was a normal birth and not...
My daughter Sophie was born full-term and very healthy, weighing in at a whopping 9 lbs, 2 oz. She was a normal birth and not breech. The day that we were being discharged from the hospital, the pediatrician told us she heard a click. We had no idea what it meant but after she explained it, we were immediately scared to death. We went to our new baby appointment and her new pediatrician heard this click as well and referred us to a pediatric orthopedic surgeon. We were told to wait a month for an ultrasound.
When we had the test, we were immediately shuffled into an appointment. We saw the Dr. for what seemed like less than 5 minutes and were told that both of Sophie’s hips were dislocated and we would have to put in her a Pavlik Harness for 24 hours and a full two weeks. After our two weeks, we went back to the Dr. and discovered that our harness had “failed” to relocate the hips, so we were moved into an Ilfield Brace. After two weeks, we discovered that Sophie’s hips were in the sockets, but were now finding out that the sockets were way too shallow…so our directive – keep her in the brace.
We remained in the brace for 8 weeks with no change. After a long discussion with our Dr. we made the decision to put Sophie in a Spica Cast. We cried in the Dr. office and talked to a number of people about it…we were scared, sad, mad, all of the emotions that you have when something happens to your child. We had so many reservations, read too many blogs and stressed over this cast being on throughout the summer…one of the hottest we’ve had. But, after going through the initial surgery for casting discovered that Sophie didn’t care at all. Nothing changed her, nothing fazed her…she was Sophie and did her thing. In the course of the cast’s 3 month application, Sophie learned to crawl, met all of her milestones and was still dressed in the cutest little girl clothes (there was just no fun summer swimming and not a lot of time outside for the time she was in the cast).
When all was said and done, Sophie’s hips came out in close to perfect condition. While we are having to wear a brace at night, the Dr. is very happy with the depth of her hip sockets and she is looking great. We are so grateful to our Dr.s and now have absolutely no regrets over the choice to cast her. She is now 18 months and running around like crazy!
Theo’s StoryTheodor (Theo) Was Born at 35 week’s, healthy 6lb 9oz, and is our second baby. He was Born via Emergency C/S as he was Breech and...
Theodor (Theo) Was Born at 35 week’s, healthy 6lb 9oz, and is our second baby. He was Born via Emergency C/S as he was Breech and Premature
At our routine 6 week check they noticed Theo’s hips weren’t in his socket’s but weren’t too concerned. We kept going back every month for a ultra sound check, Each time would be told to come back in a month Skip to 6 month’s, They FINELY done a X-ray, My gosh did they get a shock!
Theo was booked in for a emergency surgery that Friday, To cut the tendons and be put in a cast for 6 months!
We cancelled and got a second opinion. So Glad we did as we went through a top professor. He diagnosed Theo with “Bilateral Varus Derotation Osteotomies Hip’s & Hip Spica”. Basically 8 Pin’s and two plates put in for life… Theo would also be in a cast for 6 weeks.
Must note on top of this, Theo also has serve Reflux and Erakah had only just turned two! Also, we are 12 hours away from Family for help! As we are farmers.
As of this writing, Theo has 6 day’s left in his cast. It has be hard. The cast is 47cm wide!
But I would love to hear from anyone that had this done and still have the plates in.
We love our wee Theo, for all he has been through, he is so brave, happy, and a delight to have!
Autumn’s StoryAutumn is 20 months old. We have just found out she has Bilateral Congenital Hip Dysplasia. Her left hip is partially dislocated & her right...
Autumn is 20 months old. We have just found out she has Bilateral Congenital Hip Dysplasia. Her left hip is partially dislocated & her right is completely dislocated. The feeling is overwhelming. As an infant learning to crawl she sometimes favored her right leg. Late to start walking (16 months) she also favored the right leg & even limped.
As first time parents we were concerned but every doctor visit they seem to think she was just a little behind schedule but perfectly fine. It wasn’t until other people started showing concern we made an appointment strictly to check her limping walk that we had assumed her way of learning her balance. Within 5 minutes her doctor felt there was an issue & recommended x-rays. 2 days later she was diagnosed & scheduled for surgery. We’ve not yet begun our journey, surgery is schedule for June. I will update as we move forward.
Emma-Lee’s StoryFirst off, I want to thank each and every one of you for this site, for spreading the word, for giving our children a chance!!...
First off, I want to thank each and every one of you for this site, for spreading the word, for giving our children a chance!!
When my husband Matt and I took Emma to her wellness visit, her pediatrician said everything was “perfect”. We had mentioned that Emma’s hips were popping and clicking, and she said it was “normal”. It is just what happens when babies are growing. So we left the office, confident that our baby girl was, as the Dr. said, “perfect”. Yeah well we learned pretty quick, our pediatrician messed up big time. Matt kept telling me “something just isn’t right”. I said not to worry, the Dr. said she is perfectly healthy.
His worries started to worry me and we ended up making another appointment. I wasn’t worried, as I didn’t even even know what hip dysplasia was. When I gave birth, they made us watch a million videos on SIDS and Shaken Baby Syndrome, not one piece of literature in the stacks of paperwork I brought home stating anything about hip dysplasia. So we get to the Dr. and she tells us something isn’t right, I want you to go see a pediatric orthopedic as soon as possible. “WHAT IF WE NEVER NOTICED IT????” That was what we were thinking, since Emma was just there less than a month ago and every time she did the leg checks she was good to go. There is no way my child developed this condition in less than a month!!!! She referred us to the Women and Children’s Hospital.
We went to the hospital and within minutes had her x-ray done. We were called back into the room and Dr. F simply said this “She has hip dysplasia, she needs to be put in a cast, we can do it as early as next week”. THAT WAS IT! So here we are completely blindsided, though we did do research before we met with Dr. F. He did not explain ANYTHING to us. It was like if I had to get a cavity filled, just very vague.
At this point I am a puddle. After we left the hospital, we went to the park to try and relax with Emma and all I could do was cry and think! ALOT! I told my husband, we need a second opinion, maybe a third. This is our baby we are talking about here!!! Our first baby who is so beautiful and perfect. So I literally googled a Dr. and found the University Medical Center. We made an appointment for a few days later (we were blessed to get in so fast) and we also made a back-up appointment at another hospital. Both about the same distance from home.
We met with Emma’s amazing team on the 15th at University Hospital, and that is how we found Dr. C. He explained everything so well, answered every question, made us feel comfortable, I had faith in this guy and so did my husband and we didn’t think twice about it. Emma needed a closed reduction and spica cast for 12 weeks, but we all know, there is no guarantee. WE FOUND OUR DR. TO FIX OUR BABY!!!! Dr. C moved to from Canada because the main hospital is in the process of opening a children’s hospital and he wanted to play a major role. His credentials astounded us! He worked/studied at one of the top 3 pediatric hospitals. We were scheduled for surgery only a couple weeks later. It all happened that fast!!!
In the mean time playing the waiting game, I found https://www.facebook.com/groups/Hiptoddlers/…….a DDH Group on Facebook. I just randomly chose it and started to learn more about my babies condition. It was the best thing I could have done for myself, my husband, and for Emma. We met amazing mommies who have all been in our shoes, who are still going through it, all types of stories and surgeries, which I must admit was scary at first because of worst case scenarios I seen. Through this group I was able to obtain priceless information, new friends, and help with endless support and love. I was given a spica table, a cast cooler, a bean bag chair, moleskin tape, toys, clothes…..all from perfect strangers. We took trips to Canada to get these items, just so happy to have help!!! It’s just the 3 of us. No family. This is it, but it’s perfect as long as I have my daughter and my husband.
The surgery date came, we drove up the night before since she had to be there at 6:30 a.m. I was worried about her not being able to have a bottle after 1:00 a.m., as we were starting to get into a sleeping routine finally LOL. She was perfect! Woke up happy like always. We got to the hospital and signed in, sitting there about to just hide in the corner and cry. We all went into the pre-op room, and the whole time I kept thinking, why my baby? Why this beautiful, precious, perfect little angel who was sent to me at the perfect time in my life. (I lost my mother in August and if I was not pregnant, who knows where I would be now. Emma-Lee saved me from myself) The anesthesiologist came in and explained everything, we chose not to go back with her as we were recommended how hard it is on the parents. We trusted these guys so we let her go. She was totally fine with it, busy playing with a toy 🙂 We were warned the hardest part was watching them take your baby, but the staff and Emma were so awesome I only cried a few tears and was OKAY!
What seemed like 20 minutes even though it was about 2 hours total, the Dr. came out and we were very nervous as they were not 100% sure that when they did the closed reduction and injected the dye of the outcome. He said it went perfect! She had a bilateral closed reduction and he wanted to do an MRI to make sure all was well. We were then called back to see her after her cast and surgery, and again, I thought I would just flip. NOPE! I was fine and so was my husband. Emma slowly woke up, didn’t even cry, and was smiling in minutes. We are so blessed we got through the hard part. We were then transferred to a room that we had to share with another child who was driving us nuts because Emma wanted to sleep and the boy and his guests were very loud. I asked if there was any way we didn’t have to stay the night as only one parent could be in the room, that wasn’t going to happen with us, and the noise was loud as we were directly across from the nurses desks.
A few hours later Dr. C came in and told us the MRI looked perfect, that Emma was the “poster child” for DDH and that he was so happy with the outcome that we could leave! We stayed the night at the Ronald McDonald house the night before and then again the day she had her surgery. I had already picked up a loaner car seat while Emma and her daddy were getting the MRI done. I could not believe that they let us leave!!! They gave us a few prescriptions for Tylenol and ibuprofen. She didn’t need anything after surgery so I didn’t think she would even need that. We have never given her any medicine except eye drops when she was a month old. They also gave us a prescription for Vicodin! I was like, why? They said since we drove in from Buffalo, they wanted us to take it with us just in case. So I filled the Tylenol and ibuprofen, just in case.
We got back to the Ronald McDonald house around 5 p.m. We got all this done in less than 12 hours!!!! AMAZING! Emma did great, only cried when she was hungry. We even went to breakfast the next morning with one of my husband’s friends and his friend’s little girl. Emma was perfect. She loves her new car seat as it sits up high and she can see everything 🙂
Since we have been home it is like nothing happened. I thought she would flip out having her cast on as she was using her feet for everything, even to hold her bottle LOL. So far, we have been doing more than awesome. Emma loves her spica table, she is the same baby she was before her cast. Her daddy got her a toy that goes on the floor. You lay them on their belly and they can use their hands to spin and grab things. She was spinning around and around and loving it! I believe in strength in numbers. ALL MY FELLOW “HIP” MOMS, thank you! Gina Jay, thank you for answering all my calls when we were gone. It was all good news every time! Thank you to friends for support and most of all THANK YOU DR. C FOR DOING AN AMAZING JOB!!!!
Last but not least, we know that their can be more casting, more problems that may arise, but the love and positivity all around us has allowed us to get this far with no problems at all!!! Even our first poop diaper was a breeze LOL. To all you moms out there who are about to go through this, trust me (I am not the most optimistic person, my better half carries that trait lol) TRUST in your Dr. If not, find a new one. TRUST that this is temporary. TRUST that all of our children are stronger than we are. To my fellow “hip” moms, as Bob Marley says it best “Don’t worry about a thing, ‘Cause every little thing gonna be all right. ”
Peace and Love- Sara, Matt, and baby Emma-Lee <3
Maddison’s StoryMy daughter was born on 19th January 2013, during her routine check up they informed me she had ‘clicky hips’ and a Physio will fit...
My daughter was born on 19th January 2013, during her routine check up they informed me she had ‘clicky hips’ and a Physio will fit a pavlik harness on her and we were to wait for an appointment for a scan and to see a consultant. The harness didn’t seem to bother Maddison, it seemed to bother me more, we had no straight answers and were told we have to wait until she has her scan. At first we would take it off to change her and bath her, 4 weeks later we finally had our appointment.
The scan showed that her left leg was at 45 degrees and her right was at 35 degrees. The consultant informed us that Maddison was to stay in the harness 24/7 this is when I broke down. We had to learn to put her vests and change her nappy without taking the harness off, she couldn’t have a bath so we had to wipe around and under the harness and Maddison hates being fussed with and dressed so this was a distressing time for her and me.
We were due to go back for a scan 4 weeks later where there had been progress so Maddison was allowed out for baths. That night was bath night and it was great seeing her kick about in the water. Four weeks later we returned and again Maddison’s hips were progressing this time we were allowed to take the harness off for 1 hour a day for her to have a kick about we were hopeful that the next time we would have an appointment it would be off all day but 4 weeks later we were told that her left hip is at 60 degrees which is where it should be but her right hip is slowing down but it’s improving as she is allowed out of the harness for a few hours a day now. Maddison is now 20 weeks and we go back soon to see how her right hip is progressing. Fingered crossed for our next appointment, we are very lucky that the harness doesn’t seem to bother her, she always smiling and happy.
Addison’s StoryOur journey with hip dysplasia started in 2010, one day after our daughter Addison was born. She was born with bi-lateral hip dislocation. She was...
Our journey with hip dysplasia started in 2010, one day after our daughter Addison was born. She was born with bi-lateral hip dislocation. She was put into a Pavlik Harness at 5 days old and wore it for 3 weeks. It corrected her left hip but the right was still a problem. She was put into a Hewson brace for 12 weeks and when that still didn’t work they scheduled a closed reduction.
We were devastated! As if having you first born baby in a brace wasn’t bad enough, we were now faced with having our sweet baby girl in a full body cast for 3 months!! What would we do?? How would we diaper, bath, feed, even go to the grocery store!! The day of her open reduction I was a mess! Addison was such a trooper though! She played in the pre-op room and was so happy (even without anything to eat.) All went well and we arrived home to start our journey.
As the days and weeks went by things got easier and pretty soon we were pro’s! I swear I am MUCH better at diapering a casted baby than an uncasted one! When cast removal day came, we were ecstatic!! How great it was to have our smooshy baby back!! Addie had to wear the hewson brace full time for a few more months and then back to nights only. We were optimistic with each Dr’s appointment and really hoped our journey was coming to a close. Unfortunately, her hips were not progressing and a Salter Osteotomy was scheduled when Addie was 15 months old. We were so scared! I couldn’t even think about them cutting my daughter’s hip bones and pinning them without getting sick to my stomach. This surgery was so much worse than anything we had been through! Addie spent 7 days in the hospital and was in such extreme pain! It broke my heart to see her so miserable. At to top it all off…..she contracted staph while in the hospital!! She lost 4 pounds and was very sick! After about 14 days she finally started to get back to “normal” and the task of entertaining a toddler in a cast began! Luckily we only had this cast for 5 weeks.
Addie is now 2 years post op and doing amazing! She started walking at 21 months and is now running, jumping, swimming, doing ballet, gymnastics and pretty much everything else any other 3 year old can do! Her hip is developing perfectly and she only sees the ortho once a year now. She is such an amazing little girl. I am inspired by her spirit everyday!
Through all of this, we have been amazed at the lack of information and consistent care in the medical community. Addie actually has CDH (congenital dysplasia of the hip) and her grandma had the exact same surgery in 1960. I’ll say it again, the same surgery 52 years later!!!!! How crazy is that?? There are so many children and adults that have this condition and the standards of care have not changed in over 60 years!!! With all the medical genius in this world, there has got to be a better way to help! I am committed to help One Hip World and the IHDI because I cannot bear to think of all the families that have to face this devastating journey!
What I have learned from this is that my baby girl is the strongest, most talented and amazing child! She suffered through all of this with humor, strength and tenacity! She got us through!
I am the proudest mama EVER!
Of course I have to mention the support I received from friends, family, Hip-baby.org and the Baby Center community chat groups….without you we would never have pulled through this ordeal! God is great and has blessed us in more ways than we can count! We have a beautiful healthy amazing little girl and he pulled us up from the ditches over and over again!
Thank you for listening to our story!
We hope that all your little ones have continued success and happiness through their DDH journeys!
Together we can…..Together we WILL!!!
For more on our journey visit: www.onehipblog.blogspot.com
Allison’s StoryAllison was born at 5lb 10 1/2 oz baby Girls. When my fince Damon and I first met our new baby girl we though she was...
Allison was born at 5lb 10 1/2 oz baby Girls. When my fince Damon and I first met our new baby girl we though she was healthy, nothing was wrong with her.
But as the night went on doctors came into the room and told us our baby has Hip Dysplasia in both hips. We knew very little about this and what it was. Little as my fince and I knew it would change our lives for ever. The doctor order Allison to be in the harness until her hips go back into place.
The next day the doctors told us that Allison has a heart murmur so she had to on a heart monitor. Later that day Damon’s family came up to visit Allison but the nurse told us they was moving her into the NICU. So now have this wonderful little girl in the NICU with Hip Dysplasia wearing a harness and have a heart monitor on her.
Like any other moms I wanted to stay with my baby but I couldn’t because I had 1year old at home missing her mom.
So I started to write out the “What IF’s” what if the harness doesn’t work? What if she won’t be able to walk? What if I wouldn’t be able to care for her? What if I couldn’t be the mother she needs me to be? What if she needs surgery? What if she dies while being under? That’s what I had to live with for a year and half of my baby’s life.
Now Allison is a 27 month old toddler. She is my light of my life. I couldn’t picture her out of my life. she didn’t started to walk until 24 months. She still sees a doctor for Hip Dysplasia in New Orleans. She goes every 6 mouths for a check up.
Brody’s StoryAs any proud mother would say, the day my son was born was the happiest day of my life, it truly was. The day after...
As any proud mother would say, the day my son was born was the happiest day of my life, it truly was. The day after my son was born, not the greatest day. The day after he was born I was told by the hospital doctor that Brody had hip dysplasia. This was incredibly concerning, especially since I had only heard of this condition in dogs. I was assured that it was “no big deal” and could be treated quite easily. Everyone was so lax about the situation, I put it out of my head, thinking it really was “no big deal.” I knew we needed to make an appointment to see an orthopedic doctor, but was told we needed to see a pediatrician first.
Our pediatrician appointment went well, she assured us hip dysplasia is very common and easily treated, nothing to worry about. She also told us that Brody’s case was very minor, she could barely feel a slight click, but sent him to get x-rays to be safe. She referred us to the only pediatric orthopedic practice in our area and informed us it might be a few weeks before he could be seen. I knew the next day that his case was not minor or worry-free when his pediatrician called me personally to tell me to call the orthopedic surgeon immediately and let the receptionist know we needed to be seen within the next week. Suddenly it felt like everyone with any knowledge had lied to me or missed something incredibly important. I decided to give everyone the benefit of the doubt and not worry. That was until we went to our first pediatric orthopedic appointment (what a mouthful, right?).
Looking back, the appointment went very well. We met an incredibly competent doctor who has seen thousands of hip dysplasia cases and we had a plan for correcting the issue. At the time, I was a wreck. I felt blindsided, I was angry, I was terrified. I held my two month old son and cried thinking about all of the possibilities. But I was also hopeful. We put the Pavlik harness on him that day and wore it for an entire week without taking it off. At the time, that seemed like a daunting task. Especially because three hours after strapping him into a full body contraption with strict orders not to take it off…he had one of those two month old baby poop explosions that no diaper in the world is capable of containing. That’s right, he pooped right through his onesie, in a parking lot, wearing the harness. It is comical now, I sent my husband in the store to borrow scissors and we cut that onesie right off his tiny little body. For another six days he wore a half onesie and a harness, good thing it was August in Texas-that was all he needed!
After the first week in the harness we took a break because it seemed that Brody had a pinched nerve. We then were reduced to only wearing the harness at night. This went on for a few more weeks. Until we went in for an ultrasound to look at the progress and determine the next step. We were devastated to find out the harness was not effective. Our doctor informed us that keeping him in the harness might do more harm than good, surgery was really our only option. Everything was a blur, I was blind sighted again- I had really thought his hips were making progress! The doctor wanted to schedule surgery right away but we really felt like we needed time. Brody was three months old at this point, and the doctor wanted to schedule surgery when he was four months old. We decided we needed a second opinion, not because we did not trust our doctor, but because we felt we owed it to ourselves and to Brody to make sure we were not rushing into surgery without covering all of our bases.
In the end we made the decision to go into a closed reduction surgery when Brody was six months old. Being a new parent this was the hardest decision I had ever made. Every single surgery was difficult for me. Especially the first one. It turned out a closed reduction was not possible for one of his hips. His right side was an open reduction and his left, closed. We stayed in the hospital overnight and held our baby. Needless to say, we did much worse than he did. He was a trooper through it all. I loathed the spica cast at first but Brody really didn’t have any issues with it.
He learned to crawl, which was more like an army crawl/scoot. He danced in his cast, we called it the turtle dance because his body went in and out of his “shell.” People signed his casts (he had three). We called him “baby in a bucket.” He opened his first Christmas presents in a bean bag chair. His last cast was “water proof” and he learned to like baths again. He always had a big smile on his face. He did everything other babies do, the cast did not inhibit him at all. I even got good at the cast! I felt so accomplished the first time we went to change his cast and the doctor told us his skin was the cleanest and best looking of any child in a spica cast he had ever seen! The trick? Menstrual pads. That’s right, pads, shoved into the cast to keep any moisture from leaking onto his skin.
When he got the cast off I cried so hard I think I scared him. He hugged me and gave me a kiss, I am not sure he understood they were happy tears. In keeping with our positive attitudes I had already planned Brody’s “big reveal,” a sail boat themed ‘cast off’ party to celebrate!
Looking back on everything I remember more of the good than the bad. When we were faced with the decision to apply a full body cast to a six month old it was daunting. I gained a lot of comfort from reading other parents stories and feedback about harnesses, casts, diapering, etc. I tried to stay as educated about the situation as possible thanks to the International Hip Dysplasia Institute this was possible-I knew the right questions to ask and could make informed decisions.
Brody is two years old now but we are not in the clear just yet, we go back to our orthopedic doctor on a regular basis to keep up with his hips. His progress is wonderful, but his hips are not exactly where they should be, we have high hopes this will correct itself with time, growth, and development. We are now facing the side effects of treatment-AVN, where the ball of the joint has lost circulation at some point. Our doctor assures us that Brody’s age makes it much more likely that this issue will correct itself, but only time will tell. This may be the end of our hip dysplasia journey, or we may have more road to travel.
Kaydence’s StoryKaydence was born January 25th 2012. She was just beautiful. I had her by a schedule c-section and everything went great! Kaydence was a normal...
Kaydence was born January 25th 2012. She was just beautiful. I had her by a schedule c-section and everything went great! Kaydence was a normal baby rolling, crawling, and walking around holding onto furniture just like any “normal” baby would. After her first birthday she started walking behind a push toy. That’s when daddy and I realized that something may be wrong with her foot.
When she would walk her right foot would drag a little behind causing her to fall. We made an appointment with her pediatrician who then sent us to the children’s orthopedic center. On May 6th 2013 we saw Dr.Riley at Akron Children’s Hospital who took x-rays of Kaydence’s legs after watching her walk. To our surprise he came back with the x rays to show us that BOTH of her hips were out of place. That was like a knife going through my heart. Tears started coming out before he could even get the words out. As he was talking all I could think in my head was “why my baby” … “how could this happen”… by the time I was done having a melt down he said that word “surgery” my heart sank!My 16 month old baby was going to go through surgery! (she just had ear tubes placed the month before!)
He scheduled us for May 17th. The plan was to go in and snip the tendons and have the hip fall back into place. Well of course it sounded so simple but that wasn’t the case. He got the left hip to go into place but had a hard time with the right. He put her in a Spica cast and scheduled a second surgery for her right hip on June 12th 2013.
He had to figure out a new plan for the right hip. After surgery on May 17th Kaydence was in total shock when she woke up and couldn’t move like she used to. This was the roughest night of my life. She was scared and honestly so was I. We ended up staying over night in the hospital that night due to us missing the therapy people for her car seat rental. This was the start to a long journey ahead.
Her second surgery was very successful! That was a relief. Now both hips are in place and healing. She will be the Spica cast for a total of at least 12 weeks the doctor said. She had a cast change on July 19th. This was so exciting to us because she was only going to have a half cast on her left leg. Finally I was able to rub and kiss my sweet girls little leg.
We are so close to her cast coming off on Aug 19th (4days)! Once her cast is off I’m understanding that she will be in Rhino Brace. This has been a long summer in a Spica cast but I must say Kaydence didn’t let it hold her down. She pulled herself around on the floor with her arms (army crawling). And she even tries to stand up holding onto the couch! She has taught me that a love for your child is unbreakable, its unexplainable. I spent many nights sitting on the floor watching her sleep in just pure amazement on how strong she is and how nothing can slow her down.
As a mom I was terrified. I’m assuming I will be worried day in and day out about her hips and having to go through any more surgeries with her in the future. If you are reading this because you just found out your child is having similar issues just know that there is an end to the cast. Eventually there will be an end to the brace and your child will amaze you with the amount of strength and patience they truly have.
Its not a easy road and its definitely not ideal. But really the diaper changes become a normal thing, to tuck a size 1 diaper inside the cast and place her normal size diaper on the outside. Making home made chairs and items she can fit in becomes a normal thing. Your life will shift and things will change, but what I learned is that your child does not change. Kaydence was very happy before the first surgery and still today she is just nothing but happy. You will have many nights as a mom/dad crying and praying for everything to be over but that’s just a normal thing for any parent! My number one advice is to let people help you. If you have parents that are willing to help you like I do. My parents have been extra amazing during all of this. Let them help. Aunts/uncles/nieces/nephews allow them to help you a little bit. I wish you nothing but Good Luck! 🙂
SophieOur beautiful daughter Sophie entered the world on the 12th may 2011 weighing 7 pounds exactly. From birth I knew there was something wrong! I...
Our beautiful daughter Sophie entered the world on the 12th may 2011 weighing 7 pounds exactly. From birth I knew there was something wrong! I requested to have a specialist pediatrician to come and see her. The Doctor did not pick up anything!. I was still not happy so at 6 weeks I made an appointment with another pediatrician who I had worked with during my nursing agency days. He took one look at her hip, tested for hip Dysplasia ….and I remember this like it was yesterday…Chris turned to look at me and said “Sorry sweetie I think she has dysplasia of her (L) hip”. Within 24 hours we were at orthopedic specialist rooms getting Sophie Looked at. After scans, and an x-ray Professor Cundy advised what was my our worst fear. Sophie had Hip Dysplasia.
The surgeon referred us to a private physiotherapist and a Dennis -Browne splint was put on her. I horrified at the almost 180 degree angle her legs were in — it broke my heart. It was as if someone had ripped my baby away from me. I wasnt allowed to bath her, hold her the way I wanted to. At 10 weeks of age Sophie’s hip came out and she was was then booked for surgery – a Tenonomy (where they nick the tendon to release it). She was then placed in the Dennis Browne splint again. This did not work and her hip came out again. At the same time I lost my brother – who died while scuba diving , so to say it was a stressful time is an understatement!. At 14 weeks she was booked to have another Tenonomy, and then a hip spica was applied.
Sophie had her hip Spica on for 24 weeks. At approximately 9 months she had her cast removed and then went into a rhino cruiser for night and day for close to 12 months. Treatment seemed to be working and we as her parents sighed with relief. She started walking when she was 2 – a very happy and emotional time for her parents. It was a milestone we longed to experience.
We thought the nightmare was over, and then in November 2013 I noticed Sophie was walking with a limp. I made an urgent appointment for Sophie to see her surgeon. After more x-rays- he confirmed our worst fear. Sophie’s hip had come out again and he told us she needed an innominate salter osteotomy – a more invasive surgical approach. I cried all the way back to the car. The thought of my beautiful 2 year old girl having to have this was devastating for me. Sophie was booked to have this procedure on the 19th of feb 2014.
I struggled with allowing the surgeon to operate again. I started looking at the statistics of these surgeries and found out as much as I could. The more I looked into it, the more I realized I had to allow her to have the surgery. If I didnt she could / would end up with an arthritic hip. If I did she could end up being cured. We had to try this surgical approach.
Sophie had her surgery on the 12th of February this year as planned. The hardest thing I have ever done was to walk her into the OR for the surgery knowing that she will not be able to walk or move the way she could before. Being 2 we could not explain it to her in detail. She was non-the-wiser. She came out of surgery a real trooper — and she has coped better than her parents!
Sophie is now almost 6 weeks post op and she will be having her cast removed next week. We are relieved she will have some freedom back and be able to move a little more. She is booked in to have the wires removed on the 30/4. Which will be her 4th procedure on her hip.
Sophie is my little hero – she has been so tough through all of this. She really should be given a bravery medal. We only hope that this surgery is successful and Sophie who has not had a great start to life can look forward to a fun childhood.
To those that are going through this, you are not alone.
Bernardo’s StoryBernardo’s Story: successful treatment with Pavlik harness in baby boy with bilateral hip dislocation. Bernardo is my third child, his two older brothers were born...
Bernardo’s Story: successful treatment with Pavlik harness in baby boy with bilateral hip dislocation.
Bernardo is my third child, his two older brothers were born with healthy hips. Bernardo was in a breach position entire pregnancy and was delivered by C-section. I (his mom) was also a breach baby and had dislocated hip at birth, followed by a persistent dysplasia which required long treatment with braces, closed reduction and casting.
Considering my history and him being breach, I anticipated that Bernardo would have hip issues, although, of course, I was hoping he would not. As soon as he was delivered, his pediatrician knew that his hips were dislocated. Bernardo was referred to a pediatric orthopedist who did a physical examination of his hips, and at 6 days of age he was put in a Pavlik harness. The harness had to be worn 24 hours for a minimum of 6 weeks. Of course it was heartbreaking to see my baby boy wearing such an awkward device that restricted him from moving his legs. It also restricted me from holding him in certain positions but it did not restrict me from hugging and cuddling him. All my family members and I knew how important it was for Bernardo’s hips to continue wearing the harness at all times. We all learned to cope with the harness sooner and better than I thought we would. I learned to breastfeed him while hugging him in an upright position, laying him on my lap prompted with pillows or side laying position while only his upper body and head were turned towards me. My husband and I learned to change his diapers very quickly. As our baby grew, we learned to adjust the chest and shoulder straps of the harness ourselves. Leg straps were adjusted by an orthopedic nurse, and ankle straps were never touched. Bernardo did not seem to be bothered by the harness at all.
Bernardo was born in May, so he wore his harness during summer time. Because it was so hot the skin under his shoulder straps became irritated. I gently wiped it with moist cloth and dried thoroughly once or twice a day. There was no fabric soft enough to place under the straps, so I used baby wipes. I dried them completely in a drier and cut them into appropriate size. I changed them almost every hour and through away the used ones because they were so inexpensive. This technique really helped. Dry wipes absorbed moisture very well and Bernardo’s skin was healed completely by the next day. After that I continued using the dry wipes to prevent further skin irritation.
Bernardo’s hips became stable (in the sockets) after one week of wearing the harness, so it was apparent that the harness was an effective treatment for him. After wearing the harness for six weeks Bernardo had an ultrasound. The procedure did not take long, was not invasive and Bernardo was quite comfortable the whole time. He was laying on his side while the technologist scanned the opposite side and he continued wearing the harness during the procedure. Alpha angles of his hips were 65 degrees for the right and 62 degrees for the left. I do not recall values for beta angles, but they were normal. The very next day I was given instructions to remove Bernardo’s harness. His doctor did not think that weaning was required, but I removed the harness gradually over several hours. At first I loosened the straps a little, then a little more until the harness was very loose, and then I removed it completely. His legs had dents in them where ankle straps were, it took over a month for them to disappear. Bernardo seemed just as comfortable out of the harness as he did in it. I cuddled him a lot and carried him in a kangaroo wrap. I made sure that his legs were in a position similar to how they were when he was in a harness.
At four months of age Bernardo had his x-ray. Acetabular indexes were 23 degrees on the right hip and 26 degrees on the left. Ossification centres were not yet noted. The orthopedist said that it was within the norm. Bernardo did not require any treatment, only a follow up in four months to ensure his hips did not become dysplastic. I did not restrict any activities of my baby, but I continued keeping his legs abducted whenever possible. I carried him on my hip, never swaddled his legs, I even purchased the widest stroller and car seat I could find in order to keep his hips in a “froggy” position.
At eight months of age Bernardo had another x-ray. The doctor did not take measurements for acetabular index, he determined that his hips were not dysplastic only by looking at the x-ray. He also made sure that Shenton’s line was continuous. There was still no ossification centres noted. The orthopedist said it was still within a normal variation because they usually form between four and eight months of age. I was worried about this, though, because this was one of the problems I had with my hips as a child. In fact, it took a very long time before my cartilage turned into bones. I was also afraid that Bernardo could have developed avascular necrosis, but I knew longer monitoring was required to rule out that possibility.
Bernardo’s next x-ray was in four months, two days before he turned one year old. After looking on his x-ray his doctor said that his hips were developing very well. Acetabular indexes were within normal values (unfortunately I did not ask what they were) and I was happy to see bilateral symmetrical circles where ossification was taking place. Our next follow up is scheduled in one year, when Bernardo turns two.
Bernardo is a very active little boy, crawling, furniture walking and always trying to catch up to his older brothers. His hip development will be monitored until his adolescence. My family and I are very fortunate and very grateful to receive care from such knowledgeable and dedicated team of healthcare professionals. They provided appropriate timely treatment for Bernardo, without their expertise my baby’s outcome could have been very different.
As a mom, I would like to share with other parents some ideas that I have learned from this experience. Draw your strength from your love to your baby. I felt better when I cuddled my son, massaged his feet, his back and legs around the harness. Talk to others who you trust. I talked to my family members, my neighbour and many parents on playgrounds. I even met some moms whose babies were in similar situations. After talking about the issue it seemed less threatening, and, instead of focusing on the disorder I started to focus on how to make things more comfortable for my baby and the rest of my family. That was something I could do, so it empowered me and made me feel a lot happier. Another useful tip is to gather information. Ask your healthcare professionals questions, tell them your concerns, get second opinion when you decide it is appropriate. Ask where you can get answers to your questions when your doctor is not available. Doctors are very busy, and most of my questions came up after the appointments. A couple of days after an appointment I would formulate my most important questions and phone the orthopedic nurse, she was wonderful answering my questions. After that I felt calm instead of feeling worried and uncertain.
I hope sharing my son’s experience will help some parents feel more optimistic about their babies’ prognosis. Early treatment with Pavlik harness seems to have helped my baby’s healthy hip development. May all our children be blessed with health and happiness!
LaylaMy little Layla had developmental hip dysplasia and these stories helped me get through it so I decided to post my own too… She was...
My little Layla had developmental hip dysplasia and these stories helped me get through it so I decided to post my own too…
She was born on 8/11/14 and was checked a few hours after by a nurse…Who said she had ‘clicky hips’ I didn’t know a what that meant and I asked her if it was bad and she said “I’m sure it’s nothing to worry about” so I dismissed it…a doctor then came and confirmed it and said she has DHD and that she needed a scan…she was scanned later and we found out she had it really bad and that she needed a pavlik harness…a week later we returned to the hospital and had her fitted into it…it was awful…But we knew it had to be done and we knew it wouldn’t be forever…they told us it should only be for 2/3 months…My daughter was 2 weeks old at that time…so tiny and fragile…
We were advised to come back for another scan a month later…which we did…The results of that scan were very good she had improved alot…And they said that she wouldn’t need an operation…The doctor told us that she would only need one more month so we left…endured another month..And came back for another scan…it showed that her right hip was less than 1 degree away from 60 but that the other one was far behind…We had to keep it on for another month…this month was the hardest but we did it and came back…this time the scan showed that her right had completely healed but that her left hip was very close but not yet healed…we had had enough of it at this point but there was nothing we could do…the doctor said come back in 2 weeks…we came back and scanned her hoping it would be the last time…And we received the wonderful news that she was healed and can now remove the harness…what a relief it was to hold my little girl without that harness…
Now she is 5 months old and and we are waiting for her scan next month to check if it’s all good and that the problem hasn’t come back…
I hated the harness…im not gonna lie…but it was worth it…
A little advice for new mummies who have to go through this…buy your own harness! I regret not buying my own and using the ones they offered at the hospital…they were so bad! They would get dirty and I didn’t have a spare to use while I cleaned it and so I would just wipe it but it would stink and the Velcro would get hard and it irritated her skin…so buy your own there are some really cute ones that have cloth wrapped around them to not irritate the skin…
If you have any questions at all please contact me I’m happy to help with what I can 🙂
You’re doing good mummy/daddy!
Be strong…stay happy…it will be over soon 🙂
MorganMorgan was a normal baby with no real issues. It wasn’t until she was about 6 months old that we noticed the uneven skinfold on...
Morgan was a normal baby with no real issues. It wasn’t until she was about 6 months old that we noticed the uneven skinfold on her right thigh. We asked the pediatrician about it and she told us that it was nothing to worry about, just an “extra fat pad”. We put it out of our minds and moved on. Morgan crawled normally and at 11 months, she was pulling herself up and cruising around furniture and climbing on everything. She couldn’t walk though. At her 12 month check up, we expressed concern with the pediatrician who told us not to worry, it was normal for kids to not be walking yet. Again, we put our concerns in the back of our minds. At 15 months, she still wasn’t walking. Again, we expressed concern and were told by the pediatrician that while this was on the late side of walking, it was still not an area of concern. Despite our better judgement, we didn’t push the issue and prayed Morgan would soon start walking. At 18 months, she was taking a few steps, then she would fall. It also seemed that she was dragging her right leg. At her 18 month check up, the pediatricain finally agreed that there may be an issue and sent us for a CT scan. The day of the scan, she called us to tell us that it showed that Morgan had DDH and a hign dislocation of her right leg. We were told over the phone that she would probably need surgery and we needed to see an orthopaedic surgery as soon as possible. Needless to say, we were in shock. We had never even heard of DDH and now we are being told our baby may need surgery. We saw the orthopaedic surgeon a week later and the diagnosis was confirmed. He advised us that Morgan’s hip was severely dislocated and most likely had been that way from birth. due to her age, harnesses were not an option so she was schedule for a closed reduction on July 13, 2013. She was 19 months old and went in to her first spica for 6 weeks. She did amazing, learned how to crawl and get around pretty quickly.
It was summer in Virginia, so it was pretty tough to do anything outdoors with her. We were excited after 6 weeks when she was supposed to have the cast removed and go in to a brace. Unfortunately, when the cast was removed, her hip popped out again so she went back in to another spica for an additional 6 weeks.
It was a challenge dealing with an almost 2 year old in a spica cast. changing her, keeping her occupied and carrying her were very tough. I had just been preparing to return back to work prior to the diagnosis, so that was all put on hold,
After 12 weeks in a spica, we were told Morgan’s hips looked good and she would go into an abuction brace for 6 weeks which we did. All looked good. We returned for her three month post op and unfortunately, the xray showed her hip had moved again and she would need an open reduction.
In March , 2014, Morgan had an open reduction and spent another 6 weeks in a spica. She did great, even learning how to crawl up the stairs and stand in her spica. Her positive attitude and perserverance was such an inspiration. The doctors felt very strong that this last procedure would do the trick and we should be good, so imagine our dismay when we went back for her 6 week post op and we were told that her hip had moved again. Devestated doesn’t begin to explain how we felt. Morgan had started walking and playing and was so happy she could play with her friends and be a “normal” kid. Now, we were looking at a second summer in a spica cast. On July 31, 2014, Morgan had a Dega Osteotmy and spent another 6 weeks in a spica.
It was harder on me this time as she was almost 3 years old and weighed almost 30 pounds without the cast. As always, she was a trooper and we got thru it. At 6 weeks, all looked good, at 3 months, all looked good and today, April 27, 2015 at 3.5 years of age, Morgan got the “all clear”. Her hip looks perfect and we don’t have to be seen again for two years!
This has been such a journey for us. We have struggled physically, emotionally and financially. Our faith has been tested and our family has been tested. Looking back, I believe there is a reason that our kids get “chosen” to go thru this. We have amazing kids who need to show others what it means to be happy thru the trials, to perservere, to appreciate the little things and to never give up. While our journey seems to be over, I believe our family has been set on a path to help spread DDH awareness to others so that other families know the signs, they know the dangers of certain things and that they learn to know their children and not give up when they think something is wrong. Our journey has been full of ups and downs, but I will say that my faith is stronger, my family is stronger and my appreciation for the little things is stronger because of DDH and for that, I am thankful!
Clara’s StoryClara Mae is a healthy beautiful baby. Her birth was a piece of cake, no issues. Not until her 6 month check up in January...
Clara Mae is a healthy beautiful baby. Her birth was a piece of cake, no issues. Not until her 6 month check up in January 2015 Did we know anything was going on. At her 6 month check up, her doctor was going through the normal well visit routine when she got to her legs. As she moved them around she noticed Her hip joints were very tight. She immediately sent us over to the hospital for x rays to determine Her left hip was dislocated.
The very next day we were sent to a pediatric orthopedic specialist. Being 6 months old, this was the cut off line to try the palvic harness. Since Clara had just turned 6 months old We did attemt the harness for 4 weeks. The harness did not show enough result. Clara was put to sleep, her groin muscle was punctured, and she was placed her her first spica cast. Clara was in the cast for 5weeks.
When it was time for the cast to come off she was fitted for her rhino cruiser. After 4 weeks in the cruiser her hip was pulling back out of socket. This catches is up to date. Clara was put back to sleep, a dye was injected to check proper placement of the hip, and she was placed in her second spica cast.
We have been in this cast for, a couple days shy, 7 weeks. We go to the doctor this afternoon, June 9, 2015, in prayers we can be placed back in the rhino cruiser and free of casts forever!
I have one trooper on my hands. She crawls, rolls over, stands up, and tries to walk!
MaryMy daughter was diagnosed with DDH right after she turned 1. She was born full term 9 pounds and my pregnancy/delivery was a breeze. At...
My daughter was diagnosed with DDH right after she turned 1. She was born full term 9 pounds and my pregnancy/delivery was a breeze. At her 3 month check up we found out her head was above average in size , after being seen by a specialist we were faced with hydrocephalus (fluid over brain) which cause Macrocephaly (misshapen head) ……and that brought us to a development delay !! She was placed in physical therapy and occupational therapy for several months and slowly met all her goals.
Her greatest challenge was walking she started to walk finally when she turned 13 months only to find we had a limp. After being sent to a orthopedic we found our problem and was told the options, we all want what’s best for our children so I chose to have it corrected while she’s still young for a better quality of life in the future. Only 1 month after she started walking she was set asleep for an 6 hour open reduction and placed in a hip spica for 3 months.
At first I cried almost everyday it broke my heart to see her so miserable but after about a month she and I got use to it being there (I was shocked) so in case your wondering it’s not that bad it just takes getting use to the only advice I can give is lots of TLC and clothing wise shirts a few sizes too big and leggings about the same …..but anyways after being took out of the cast 3 months later she walked within 4 days her doctor and I were blown away.
A month after the cast was gone we had an appointment for an X-ray only to find that hip was trying to dislocate again so after another long discussion her doctor has decided a second surgery will do the trick ,without question we take his advice because we trust the doctor and he is the best and everything you want in a doctor and I’d never let anyone else see her for this . We go back in a few days to get our next surgery date so please keep us in prayer. There’s nothing God can’t do !!
AshleaThis is the hip journey of my oldest daughter, Ashlea. I have 2 daughters, Ashlea and Ava, and they both have their own hip Journeys....
This is the hip journey of my oldest daughter, Ashlea. I have 2 daughters, Ashlea and Ava, and they both have their own hip Journeys. Ava’s is a completely different and quicker journey. But I will begin with Ashlea’s.
Ashlea was born 9 days overdue, her birth was everything a woman wished a birth would be. It was an amazing. She weighed in at 7lb4oz. She did have comlplications from bathing in and swallowing meconium. But she was a lucky baby girl who came home at 9 days old. She was perfect!
After a few months I began to notice Ashlea’s pant legs were shorter on her left side. I didn’t really take too much notice. She was a happy baby, even with reflux that had her projectile vomiting after every feed. She was a baby that didn’t roll and didn’t learn to crawl. By 13 months old Ashlea had learn to bottom scoot, she did this with her left leg straight out in front of her. It was now that I was getting worried that there was something wrong. I ended up making an appointment for her to see a pediatrician. He took one look at her and said she was fine. I didn’t agree. So much so, I booked in to see a different pediatrician. Again, she was perfect, apart from a slight leg length descrepancy. “Everyone has a longer leg!” I did agree, but not to the degree that Ashlea had. After talking to her father about her head shape (flat on one side from sleeping on her back) we decided to make another appointment with yet another pediatrician. Finally, when he put Ashlea’s legs together, he saw the length discrepancy.
He didn’t say much but sent us to see an orthopedic surgeon. Finally someone agreed with me! There was a length discrepancy that needed attention! We went to the orthopedic surgeon and he sent us straight down the hall for an X-ray. I will admit, I was not expecting to hear or see what we heard or saw when he placed Ashlea’s X-ray up on the lighted screen. There it was. My sweet girl, only a toddler, only 18 months old had a completely dislocated left hip! Over the last 18 months, Ashlea passed her maternal child health nurse appointments with flying colours. The times she went to gp’s I did get them to check her legs and it took 3 peds to realise something wasn’t right and send us to a specialist!
I didn’t know what to think, apart from happiness, that my mothers intuition had finally paid off! We were told Ashlea needed to have an open reduction. This was to happen 3 weeks after she was diagnosed. During these 3 weeks, Ashlea learnt to walk. She has a cute limp and fell a lot. But she accomplished something I thought she never would. She walked. Then 2 weeks later, she went in for her 1st of many surgeries.
I had no idea what to expect. Her surgeon wasn’t the best at informing parents what he was going to do their precious children. I knew she was going to come out in a spica cast. Spica cast! What was that? The internet was my best friend and worst nightmare at the same time.
Ashlea and I spent 4 nights in hospital, learning to care for Ashlea in her new appendage. The 1st time I saw her in recovery stuck in her plaster cast. I cried! At that time I didn’t know how we were going to get through this. I just found out I was expecting my 2nd child. I have touch and go pregnancies. I was told not to lift more than 10kg…..My Ashlea now in her spica cast weighed 20kg! I can’t not lift my daughter at the best of times, but now she relied on épée even more! So I just got on with it and crossed my fingers that my pregnancy would be ok.
Ashlea was such a good little girl. She adapted so quickly! She spent only 6 weeks in her spica (looking back now, I believe she should have been in it longer). It only took her 1 week to sleep through the night again. I started turning her every 3-4 hours during the night, but she could only sleep on her back. While on her tummy she would vomit (reflux) I spoke to her surgeon and they were happy with us to leave her on her back as long as she was happy and not uncomfortable.
On the day of her spica coming off (2nd surgery, even though no operation was needed) she was placed in a rhino brace. It was so good seeing her little legs again and giving her a bath! Her skin was really good. Only a few small patches of dry skin. It wasn’t long before Ashlea realised she could move around in her brace. She began bottom scooting again and after 3 months in the rhino, she learnt to walk, again. For the 2nd time. The brace didn’t keep her back. She went to the park, played with her counsins and was a happy toddler.
After 6 months in the rhino brace full time (23 hours a day) she graduated to part time. Ashlea now only had to wear her brace while asleep. With her new found freedom, she learned so much more. Climbing stairs, running, climbing onto the couch and lots lots more. By this stage, Ashlea became a big sister.
1 year after being placed in the rhino brace, Ashlea reached another milestone. No more brace! After 6 months in it full time then 6 months part time, she was now free from the brace.
Ashlea’s hips were going great. I never thought anything else would need to be done to her hips. That was until she was 4 years old (by this stage, Ashlea was now a patient at a different hospital. I transferred her here once her sister was found to have hip dysplasia as well) On one of her many regular visits, it was found that her hip was nearly dislocated again. So at 4, she went in for her 3rd surgery, her 1st federal osteotomy. This surgery was awful as was the recovery! We stayed 4 nights. Ashlea was wheelchair bound for 6 weeks. Once we were home and back to normal, Ashlea adapted well. Zipping around in her new wheels at home, kinder, childcare and while out and about. She leaned to accept the stares from other kids and adults alike. Even though it did hurt her. After 6 weeks Ashlea was given the ok to learn to walk again, for the 3rd time in her 4 short years.
1 year later Ashlea had the hardware removed and recovered quickly. She began to suffer pain on what seemed to be a daily basis. Her surgeon said it was to be expected with growing and the surgeries she had. It kept her from being included in sported etc. But she was ok with this.
The next year was a good year with no hiccups. She aced her specialist appointments and X-rays with flying colours. Then when Ashlea was 7, one of her usual 6 month X-rays revealed that her hip wasn’t in optimal position. Back into surgery again. For her 2nd femoral osteotomy. Again, 3 nights stay at the RCH and recovery was again horrid. Ashlea had built up and adversion to nurses. Whenever a nurse came in she believed they were there to hurt her. So as you could imagine, it wasn’t a pleasant 3 nights! But once we were home and again in her beloved wheelchair, she was fine. She spent longer in the wheelchair this time. 12 weeks. Over christmas and the Sumer break. But it wasn’t nearly as bad as it sounds. We still did family trips to the beach and made memories.
1 year later at the age of 8 it was time for the hardware to be removed. We were getting use to this now and knew what to expect. So after 2 hours in surgery and no word from her surgeon, I became worried. Then 3 hours came and went. What felt like forever was 4 hours and we finally saw her surgeon. I could tell by his face that surgery didn’t go as planned. Instead of the hardware being removed, Ashlea had yet another femoral osteotomy, her 3rd. This time the hardware was a lot bigger and stronger. So much so that she didn’t need a wheelchair for as long. She also upgraded to her 1st set of crutches. Ashlea was proud to say the least. She mastered the crutches better at the age of 8 than I did at the age of 16 when I was on them. This time her recovery from surgery was a lot easier! I’m not sure if it was because of her age and getting older and more understanding of everything. What ever it was, I was grateful for.
At the age of 9 and 9 months after her last surgery, the hardware was scheduled to be removed. This time it was only an over night stay. Ashlea did so well and was up and walking 3 hours after coming out of recovery! She did come out of hospital with her 2nd set of crutches. More for safety reasons at school and while out and about, while the bone healed. It was during this surgery that her surgeon decided that no matter what he did, Ashlea’s cartalidge wouldn’t form bone to form a sufficient ‘roof’ to keep her femoral head nice and tight where it should be. We were told that yet another surgery will need to be performed, her 1st pelvic osteotomy. But when, he does not know. If know, he needs to avoid her growth plates. Which means he will need to do more cuts in her pelvis. Resulting in a much more difficult and in-depth surgery and recovery. If we wait until the age of 13-15, her growth plates will be closed and surgery will be a little easier. But Ashlea is still in pain, so 4 months after her last surgery, her surgeon decided that an MRI was the best option to see why Ashlea was still in pain. And it revealed just that! Not only does Ashlea have a shallow acetabulum, but she now also has a severe impingement and torn labrum.
We are yet to hear where we will go from here. Her recent diagnosis was only discovered 3 weeks ago. And being over the holiday period etc, her next appointment isn’t until early February. Actually, on her 10th birthday.
The one thing Ashlea has taught me is, life goes on and that she is one tough cookie!
Amy and Giuliana“What are the chances that my unborn daughter will have hip dysplasia?” Was the question I posed to my orthopedist when I was 8 months...
“What are the chances that my unborn daughter will have hip dysplasia?” Was the question I posed to my orthopedist when I was 8 months pregnant in 2011. In my entire life’s journey with Congenital Hip Dysplasia (Developmental Dyspalsia of the Hip), I never thought to ask this question up until now.
Let me rewind to February 1982 when on a cold afternoon in Connecticut a baby girl was born. I was delivered via c-section because I was in the Frank Breech position, and as soon as I was out of the womb my incredible pediatrician did a hip check and immediately heard the familiar click of dysplastic hips. My parents, who just welcomed their first (and would become only) child into the world, had never heard of (Bilateral) Congenital Hip Dysplasia. They were instructed at that point to try placing their new bundle of joy in double diapers. If any of you are familiar with this technique, it was to basically build up padding between the legs to push them outward, in similar fashion to a brace. With this not being as successful as was desired, I was then placed into a Pavlik harness. No luck. Next up…traction at 7 weeks old. With traction not working, my orthopedist then placed me in a spica cast.
Unfortunately, none of these interventions proved to be successful. All signs were now pointing to surgery. For the next few months, I was in and out of surgery, having open and closed reductions performed. It is noted in the medical records from Dr. H that from unsuccessful attempts at both the open and closed reductions avascular necrosis was present. Avascular necrosis is when blood flow to the bone is compromised. This eventually led to more complications. In October 1982, my orthopedist walked into the waiting room of the hospital with a smile on his face. My mom thought he was coming out to tell them good news; just in time for her birthday. When he got to them he told my parents that his hands were tied. When asked by my mother if I would be able to walk, his response was, “She’ll never be a ballet dancer.”
As a medical professional, how can you say that to the parents of a 9 month old that have put their trust in you to mend your child’s condition? So heartless. At this point, my original orthopedist referred my parents to a
Children’s Hospital where I began seeing a new orthopedist. I like to refer to this doctor as the doctor who wrote the book on Hip Dysplasia. In December of that same year, he performed an open reduction and inter trochanteric osteotomy to the left hip. This was the first of many operations that the doc would perform. Over the next 15+ years he would become a saving grace to my parents, the staff like family, and the hospital like a second home.
Years passed, and I continued to see the doc on a regular basis to monitor my hip. In December 1986, 2 months before my 5th birthday I underwent a left transiliac leg lengthening and a left trochanteric transfer. In layman’s terms, I was going to be cut, spliced, repositioned, and held together with pins and wire. For the next 8 plus weeks, my tiny little body would be prone in a full body cast from my chest down. It’s how I celebrated my 5th birthday. The body cast was hinged like a clam shell which allowed my mom to check the wound and change me. On April 10, 1987, I was taken back to the operating room where the pin and wire from the greater trochanter were removed. Two days post op, I was able to walk with the assistance of a walker and was discharged back to CT in time for Easter.
I would continue to be seen on a 6 month to yearly basis until 1991/92 when another surgery was proposed. Remember when I mentioned avascular necrosis? From this, it caused the left hip to not grow at the same rate as the right, and I was now left with an almost 2 1/2 inch difference between the left and the right leg. Try being an awkward 4th/5th grader with glasses, braces on your teeth, curled bangs (it was the early 90s everyone did it!), and a 2 inch lift on the outside of your shoe. It wasn’t the most flattering time in my life, and I did go through the juvenile ribbing of classmates. My favorite was being called “Frankenstein”. I came back with some sarcastic retort, which thankfully halted anymore ridicule.
The options that the doc gave my parents were a) lengthen the left leg by placing rods with screws to be turned in order to stretch the bone. This would result in awful scaring and open wounds. There was also the possibility that the left hip was not strong enough to support this procedure. Or b) cut into both sides of the right knee, turn this little plug between the joints and slow down the growth of the leg. It would leave me shorter in height than anticipated, but would cause less stress and leave me with fewer scars. My left hip already resembled a road map, so my dear parents opted for the latter. The procedure was completed in June 1993, and was successful. I went on to have only approximately a 1/2 inch difference between the two legs, but that didn’t stop me from reaching for the stars. Did I go through a self-conscious time in my early teens with my scars? You better believe it, but all of what I went through made me a stronger woman. So strong in fact that I competed in the Miss Connecticut Scholarship pageant in my early twenties, swimsuit and all, and placed in the Top 10. God may have taken away my ability to be a ballet dancer, but he gave me a sense of humor, gift of song, and optimistic attitude.
My journey with hip dysplasia is not yet over. I’m 34 years old now and on the verge of a hip replacement. Just when, I’m not sure, but it is almost a daily struggle. My range of motion is non-existent, which makes doing daily things, like sitting crisscross on the floor to play with my daughter (her story coming up), extremely challenging. The simple things most people take for granted, I long for. I never learned to ride a bike because of my length discrepancy, and I can’t run because the hip just isn’t strong enough. I’m in the prime of my life and can’t enjoy it to the fullest. But such is life, you can’t have it all!
Now, to my daughter. The response I received from my orthopedist (my case was handed over to a new and fantastic doc, also at Children’s Hospital), told me that the chances of my daughter having CHD were more than 25%. Unfortunately due to a uterine abnormality she was breech, she was also the first born girl to a mother with a familial history…all the cards were stacked against her. On November 7th, 2011, 5 weeks ahead of schedule, I welcomed my beautiful daughter Giuliana Grace to the world via c-section. At birth no click was present, but she was to go for an ultra sound at 4 weeks. I asked for a referral from my orthopedist out of BCH for one in Connecticut and was sent to the head of pediatric orthopedics at Yale. Giuliana’s ultra sound showed that she too had Dysplasia. At the time of her birth, I wasn’t aware of the dangers of swaddling, and looking back at it now, I wonder if this also contributed to her CDH.
You can imagine how I felt when I got the news. My heart broke for her. I cried…a lot. I thought about my mother and my struggle and prayed that she didn’t have to endure all I did. Now being a mother myself, I thought about how strong my mom was and how she must have felt seeing her baby go through all of this. She is the strongest woman I have ever met, and I knew that I Giuliana needed me to be strong, too. Thankfully, Giuliana was off to a much better start; she had a specialist that works exclusively with children. Unlike my first orthopedist. She was first placed in a Pavlik harness for 23 hours a day in December 2011. Thankfully, this worked for the right hip. The left hip however, like her mother, was still impaired.
Her doctor then suggested we place her in a rhino brace. The rhino brace, I would come to learn, is what another doctor referred to as a “sloppy brace”, and often times proved to be more successful than a Pavlik harness. She was placed in the rhino around January/early February 2012. Seeing her in both of these braces was extremely difficult. The guilt I felt as her mother, feeling as if it were my fault that she was in this situation was a difficult pill to swallow. Regardless of the fact that my tiny baby was in these contraptions, she was always happy! She began in the rhino brace for 23 hours a day, just like the Pavlik. When we brought her back in approximately 4-6 weeks later, an ultrasound showed that her condition was improving. The doc said we could decrease her time to 16 hours a day; then she was transitioned to only needing to wear it at night. My husband and I both were ecstatic to hear this great news. She continued to be seen and in April 2012 she came out of the brace permanently. By the grace of God, and a fantastic team, my daughter’s hip dysplasia is not detected on X-ray.
Giuliana enters Kindergarten in the fall, and is doing amazing. We’ll go back on a bi-yearly basis at least until she is done growing. I am thankful. Thankful for how well my daughter’s hips are doing. Thankful for medical advances and improvements in healthcare. Thankful that I am where I am today because of specialists I saw at Children’s Hospital. But most of all, I’m thankful to get the opportunity to share my and my daughter’s story with all of you.
Jordan JoyI wanted to share our story with you about our beautiful baby girl. I thought everything was perfectly fine. We went to the doctor for...
I wanted to share our story with you about our beautiful baby girl.
I thought everything was perfectly fine. We went to the doctor for her 4 month shots and the doc felt her hips and made a face. She said she can hear something popping. i started getting worried, i thought everything was ok. She told me to make an appointment ASAP with a specialist so they can do a ultrasound.( she is too young for a xray, they do those after the baby is 6 months).
So we went and did that. Of course the nurse who did the ultrasound couldn’t tell me anything, she said i will hear from my doctor tomorrow. Tomorrow felt like forever.
Anyways, the doctor called and said both of her hips are mildly dislocated. BOTH?! That Friday i had to go back to the specialist to get a harness for her. The specialist told me it’s only her left hip and it is pretty bad. I am going to believe the specialist obviously. So… I freaked out. I felt like it was the end of the world. We just got JoJo to sleep through the night. The 1st few days were a complete nightmare, i am not going to sugarcoat it for you. BUT…its been a week and it is getting better each day.
She still has not slept through the night since her harness but she only wakes up just once throughout the night. She is very uncomfortable. She wakes herself up. Heard that was normally. We go every week for a checkup which is $ 50 co-pay :(. But the good news of the story is at least they caught it in time, where she will only need a harness and no surgery.( if all goes well)
Just relax and I’m sure you are taking worse then your baby is. And everything happens for a reason.
LennieThe day after Lennie arrived she was diagnosed with hip dysplasia, 8 weeks later we started the hip journey. We first started with a pavlik...
The day after Lennie arrived she was diagnosed with hip dysplasia, 8 weeks later we started the hip journey.
We first started with a pavlik harness, which was put on incorrectly and cut lennie along her stomach and her armpit, I couldnt handle watching my girl scream in pain so i cut it off of her with scissors. We went back the next day to have another pavlik put on which I demanded the ortho herself put on. 4 weeks in we were told the hips were looking really good. 8 weeks in we are told its not working and now we need to discuss a closed reduction. Our ortho would not do the surgery prior to 6 months so we gave the rhino harness a shot, which required an xray, I was asked to step out of the room for said xray, when I returned Lennie’s lip was cut open, after shoulder checking the xray tech because he refused to get out of my way I filed a complaint with the head of imaging at the children’s hospital I still don’t know to this day what happened in the room.
The rhino failed.
Then we were booked for a closed reduction with a tendon release, this was an awful experience handing Lennie over to the surgeon and going to the small waiting room to sit and wait over an hour until we could see our baby in the recovery room. Which was another nightmare she was so confused and vomitting from the anastetic, we were sent for a CT scan before we left hospital. The CT came back saying the left hip had slipped so the cast was removed before we were sent home.
We were booked in 2 days later to go thru this crap again. Handed her over again went into the waiting room, waited for 1.5 hours to go into recovery and see her once again hysterical. We later found out the doctor had taken an x ray machine into the OR and the first cast they put on did not hold the hip so they had to cut it off and redo the cast (so we were sent home in our 3rd spica cast)
6 weeks later yet again I am handing my baby over so they can put her to sleep for a cast change (cast 4).
5 weeks later cast is removed and were told the dreadful news her right hip was completely dislocated.
We are now scheduled for an open reduction, this was by far the worst hospital visit, surgery went an hour over what they expected, leaving a nervous wreck of a mom in a waiting room watching the clock tick and not having anyone come to explain what was happening drove me into a hysterical break down(cast 5, 4th round of anastethic, this cast however was half cast only right leg).
The day after surgery we are sent for a CT to confirm hip is in, we got some good news it is in, however the cast was so tight Lennie was having trouble breathing, so they now had to pull out the saw and crack the front of the cast, that same evening we are in the emergency room for rapid breathing and a high fever. At this point I had a breakdown, hyperventalated, cried so hard i almost puked, thank god I had my husband there to talk to me thru everything. They don’t know what caused the fever to spike but it broke in the ER.
2 weeks into cast we had xray that confirmed hip has stayed in place, and ortho was very happy with left hip as well, which was not casted this time but it was the initially the worst hip of the two.
September 15 we got the cast removed and told we have healthy hips!!!
12 weeks later we are hit with yet another gut punch from ddh, the left hip is not sitting how the doctor wants it to. So we are looking at yet another surgery followed by a spica in our future, because the hip is not dislocating this surgery is being pushed until she is 2 or 3.
No one mentions ddh at any pre appointments, no books mention it. I had ddh when I was born but I was sent home in a brace for 3 months I had no idea what happened if the first harness does not work. This journey has been a roller coaster of emotions for us, I feel like our first year was robbed of so many things because of countless doctors appointments, surgeries, casts etc. I learned I am much stronger then I thought I was and that my daughter is an absolute rock star. We plan on enjoying this next year to the max!
GreyOn February 27th 2017 at 38 weeks pregnant my water broke and I went in for a c section. We had already scheduled a c...
On February 27th 2017 at 38 weeks pregnant my water broke and I went in for a c section. We had already scheduled a c section for 2 days before my due date because my daughter was in breech position so this wasn’t a shock for me.
What was a shock is when the pediatrician came in to my hospital room after he had done his routine exam on my daughter, and said “Your daughters hips are dislocated so I’ve called and scheduled you an appointment with a children’s hospital. There thay will place her in a pavlik harness that she’ll wear for 3 to 4 months.” And then walked out of the room. My heart was broken. Something was wrong with my baby.
But nothing seemed wrong with her, she was perfect. So at a week and 2 days old I took her to her appointment with the specialist hopeful that he would tell me nothing was wrong with my daughter and that her pediatrician had made a mistake.
Her Dr. Came in did an examination of her hips and said that there was a slight click and that sometimes it heals itself over the first couple of weeks after birth, and he wasn’t really worried about. But just to be sure he had scheduled an ultrasound the following week.
The next week I brought her to her ultrasound and watched the screen as the technician did her job. I could see that one hip was worse than the other and I knew it wasn’t good. We then made our way back to the specialist who looked at the imaging and made the decision to place her in a pavlik harness. His first assessment was that she needed to wear it for 6 weeks 24/7 and then an additional 6 weeks at bedtime. I was a complete mess, watching them place the harness on my baby and seeing her look so unnatural, I couldn’t help but cry.
The time frame changed after our latest visit and ultrasound. The images looked so much better and he said that both of her hips were healing nicely but he wanted her to continue wearing the harness full time other than taking it off to give her a bath, and then an additional 6 weeks at bedtime.
She has now been in the pavlik harness for 8 weeks, and though at first I was scared and heartbroken, I’ve found comfort in the harness, and knowing that it’s helping her. She is perfectly happy and healthy and wearing the harness has never seemed to bother her, for that I am grateful and I am so thankful for her Dr. Giving me hope and taking the time to fully explain what was going on, unlike her initial pediatrician. And for this website that is so full of information and helpful stories.
Ann ClaireOn February 26, 1998, I was born. That same day, my parents received word that I had hip dysplasia. In 1998, they did not have...
On February 26, 1998, I was born. That same day, my parents received word that I had hip dysplasia. In 1998, they did not have the medical research they have now. They were told I would never be able to walk– wheel chair bound or AT BEST, walk with a limp and cane.
I was an infant when it happened… I was born two weeks late to my petite mother. Hip Dysplasia had never been in our family, until me. I wore a brace around my entire body. I have the scars to prove it…
To this day, on February 26, every year, my grandmother sends pictures to the doctor who delivered me. She reminds them that I was once “bed ridden” but now am a walking legacy.
Legacy sounds like a strong word. I would say miracle (only by the grace of my Savoir)… I am now a D1 athlete, SEC Cheerleader for the Arkansas Razorbacks. I NOT ONLY am fully functioning… I’d say I’m HYPER functioning. I use my talent and skills to travel around the world.
I still struggle with hip pain every once and a while, but I am thankful and Praise Jesus for that. It is a reminder of where I came from, where I am, and where I am going.
IsabellaWhen my youngest daughter was 2 months old I realized at our most recent pediatric appointment the Doctor never checked her hips for range of...
When my youngest daughter was 2 months old I realized at our most recent pediatric appointment the Doctor never checked her hips for range of motion. Which I knew was protocol for an infant. Realizing such, I decided I would check range of motion myself and suddenly noticed her hips did not move out like they were suppose and the left hip was also clicking. I tried not to worry about it because I knew we had another checkup in the next week and thought I would mention during the exam. The pediatrician asked if I had any concerns, of course I told him about the hips and he said they were fine because they “looked” asymmetrical. He wasn’t bothered by physically moving them until I mentioned a “clicking” sound I had heard. I also noticed she wouldn’t turn her head fully on one side, which we then discovered she had Torticollis. At that appointment we were then referred to a specialty hospital where they discovered Isabella had DDH of the left hip.
I thought my whole world shattered, finding out my baby may have to have surgery. I was angry at the fact that the pediatrician never noticed this and didn’t follow protocol for checking the hips. I was angry that she had to wear a harness that prevented me from being able to hold her. You learn to adapt the harness into your lifestyle and after the baby gets used to it. After all of the long drives, numerous visits and sleepless nights we are finally starting to make progress with the acetabular angle. Isabella is 6 months old now and we are no where near being out of the harness completely but we are farther than we were. I’m thankful I was proactive and we were able to treat this early rather than wait until later when she would have to have surgery per the Orthopedic doctor.
ToriLauren Parr became an advocate for hip dysphasia when her daughter Tori was diagnosed with the condition at birth. After caring for Tori through time...
Lauren Parr became an advocate for hip dysphasia when her daughter Tori was diagnosed with the condition at birth. After caring for Tori through time in a Pavlik harness and taco brace and seeing the significant improvement these treatments had on her daughter, Lauren approached the IHDI eager to tell her story and help other new parents through a similar journey.
Lauren recently answered the following questions to help bring awareness to hip dysplasia in infants and the importance of early treatment. Like many new parent’s, Lauren and her husband knew very little about hip dysplasia and what it meant for Tori, so they turned to the IHDI website. Now, they are sharing their story with others looking for that same help.
- How did you feel when you first learned Tori had hip dysplasia?
I felt terrified and very overwhelmed. Tori is our only child and we were alerted right at birth that she had a hip click. My husband and I were so excited to meet our new baby that in that moment we did not think too much of it. It was not until they took her the next day for a sonogram that the diagnosis was confirmed. In the following hours, we researched a bit more about the condition and were alarmed to see that she might need to have surgery. We were definitely not prepared to get that kind of news on day two of being new parents. I felt my already fragile infant was even more fragile. Was I hurting her hips when I held her? Would she have to have many surgeries in the future to fix this? It was definitely a lot for us to take in.
- Were you aware of what hip dysplasia was and how it is found and treated in infants?
I faintly recall my OB/GYN mentioning in passing that breech babies could have hip issues. Honestly, now knowing that she was very high risk, being a first born female in breech presentation, I wish I had prepared myself and my family better. We certainly did not know how dysplasia was treated and that was a large source of stress for us. Her prognosis just seemed so up in the air. We were told that we would try braces and see how that worked. If not, we would proceed to surgery, however, sometimes that may not be effective the first time either. Being told you have to wait and see is not the answer you want to hear for your child.
- How did you become familiar with the Pavlik harness and what life was going to be like for Tori while she had to wear it?
A hospital tech came to our room with her Pavlik harness shortly after she came back from her hip sonogram. No one had told us the results of the exam. We found out Tori had hip dysplasia when he came to put her in her brace. So, at this point we also did not know the severity of her dysplasia. The tech very quickly put it on her and handed us the written instructions. He had put the brace on without a onesie underneath, which we later learned could cause her some discomfort from the straps, and told us to follow up with our Orthopedic Surgeon on how to use it. He wasn’t sure if we could take it off and on or how to maneuver daily activities such as diaper changes and baths. It was a big blow to say the least, and a lot to take in to see our brand new baby in a full body harness with little idea of what was going on.
- What is the #1 message you would give to other parents experiencing the same situation you did?
Everything is going to be okay! It truly was harder on us as new parents than it was on our little one. I am so thankful that she went through all of this at a very early age and now has healthy hips. I did not want to hear any of that when this was happening. My expectations of a perfectly healthy little baby came crashing down the day Tori was put in a Pavlik harness and I was devastated to not be able to dress her up in all of her new outfits or even give her a bath. But she is just fine now and will have no memory of wearing the braces or the frequent follow-up visits to check her progress. It was much tougher on us as her caregivers than it ever was on her and for that I am so grateful. Regardless of the path your journey takes you, your little one will make it through this too and will be learning to crawl and walk with healthy hips before you know it!
- What tools did you use to educate yourself about hip dysplasia, good products to use and ways to care for a baby with hip dysplasia?
I had googled a lot in the beginning which got me a mix of information from various blogs. I finally decided only to refer to the IHDI website for continuity in care information and am happy with that decision. The site has all of the information we needed and more. It was a lifesaver. Tori had reflux so we had to learn early on how to keep her harness clean. We would put high socks on legs to keep the bottom part of the harness clean during diaper changes. We also used some of her next sized onesies to put on over her harness so that when she would reflux the harness was more protected and we could change her a bit easier. Even with taking every precaution, the harness would still get dirty. To clean the harness, we would dilute Dreft with water and scrub it with a tooth brush while Tori was wearing it since we were not allowed to take it off for baths or laundering. After some trial and error at bath time, we learned the best way to “bathe” her was to put a changing pad by the sink layered with towels and sponge her off. We would cup her head over the sink to wash her hair. The only difference really was that we were not able to run water over her body and we did not get to see her precious feet until we were done with her Pavlik harness and into the hip abduction brace at month two.
ClaireOn April 11, 2016, I delivered my first child, a baby girl, named Claire. When I was admitted to the hospital, my doctor discovered that...
On April 11, 2016, I delivered my first child, a baby girl, named Claire. When I was admitted to the hospital, my doctor discovered that my daughter was breech presentation. The decision to pursue a caesarean section was made.
Immediately post-op everything was a blur. I was exhausted and barely able to stay awake. The next morning, the pediatrician came to visit and on his examination, he determined her left hip had a “click” which was concerning for hip dysplasia.
As a new parent, I was nervous to hear that my otherwise, healthy, full-term baby might have a problem with her hip development. As a nurse practitioner, my mind immediately thought about possible long-term complications (delayed or impaired ability to walk, etc.) However, since I work in critical care, I tried to put the information into perspective. I told myself, I just had a healthy baby and a successful surgery and that I needed to worry less and trust more. The pediatrician was wonderful! He referred us to the pediatric orthopedist. The orthopedist recommended a Pavlik harness, a type of fabric stabilizing device, to help keep the hip in the correct position and allow the joint to further develop. I did not realize that an infant’s hips are rather malleable and so by diagnosing Claire’s hip dysplasia early, the harness could reposition her hip and allow for healing over the course of several weeks. She wore the harness for about 12 weeks and had some follow-up ultrasounds and then x-rays to confirm resolution.
At the time, the harness made taking care of a newborn a little more complicated, especially with diaper changes because there were a lot of straps to re-secure. Now, my daughter is 21 months, and I barely remember the Pavlik harness. She is not only walking but running with no pain and no physical limitations.
My gratitude for her pediatrician who astutely and promptly diagnosed her hip dysplasia and for the expertise of her pediatric orthopedist will endure for the rest of my life. They took wonderful care of my daughter! Since Claire’s experience, I had another friend whose daughter was breech and had hip dysplasia. It was so nice to be able to share my experience and encourage her and her husband as they went through a very similar situation. My hope is this post will also encourage you! Please share your experience with family, friends, neighbors, etc. to help raise awareness of a problem, that if detected early, can be be successfully treated as if it never existed in the first place.
DemiSeven years ago our daughter, Demi, was born with hip dysplasia. The doctor felt a ‘knock’ when he did the hip test on her after...
Seven years ago our daughter, Demi, was born with hip dysplasia. The doctor felt a ‘knock’ when he did the hip test on her after she was born. They told us that she’d have to wear a harness for a few months and gave us a name of a pediatric orthopaedist in town.
The day she was born I bought People magazine from the hospital gift shop because Demi Moore was on the cover and thought it would be a good keepsake for her since they had the same name. Coincidentally, also in that issue was the story of Wyatt Whitney that enlightened us on hip dysplasia. Seven years later, Demi is what is called a “flyer” for her cheer team (she’s the one they toss in the air), she’s a gymnast and a dancer with no signs of ever having HD.
She started the first 4 months of her life with her legs tied back in a harness that covered her whole body. Back then we questioned if she would have trouble walking, but thanks to the Wyatt Whitney story (in People) and the openness of the Whitneys to tell it, that brought us to the IHDI for information and support. You’d never know but for the pictures that she had hip dysplasia. Like every cause, disease, event or call to action, all you need is awareness.
The Whitneys and the IHDI gave us that and a whole lot more. We posted three pictures. Two are of her as an infant that you can clearly see how bad her HD was and the last is her doing a SPLIT! Thank you IHDI and Wyatt Whitney!
AubreyOur baby girl, Aubrey was diagnosed with Left Hip Dysplasia at 5 months old. She was not breech. The pediatrician felt a “click” while rotating...
Our baby girl, Aubrey was diagnosed with Left Hip Dysplasia at 5 months old. She was not breech. The pediatrician felt a “click” while rotating her hips during an exam which lead to an x-ray that discovered a completely dislocated left hip. We were referred to Ortho and Aubrey was fitted with a Pavlik Harness that day. Her Ortho made no promises, being that my daughter was 5 months old and the Pavlik tends to have better results with younger babies.
To our Ortho’s surprise with 3 months in the Pavlik (full time), my daughter’s hip had made its way back into the socket and seemed to be remaining in place.
My daughter was then transitioned into a Rhino brace at night for what we thought would be 3 months. Unfortunately my daughters hip socket did not seem to be cooperating, as it was remaining in place but the socket did not seem to be deepening. Her 3 months in the Rhino turned into 6 months, and now her 6 months has turned into a wait and see.
Aubrey is now 15 months old and in her Rhino brace during naps and sleep. The plan at her last visit was to give it 3 more months and if no improvement we would be discussing surgery to deepen the socket. Her Ortho believes it would be in her best interest to surgically correct the hip socket to prevent future hip complications, should the Rhino and natural growth not correct it.
Aubrey is a happy little cutie pie. She stood, crawled, and started walking within normal timing for her age. The Rhino does not bother her at night and she is even starting to hand it to us/lift her legs up for us to put it on before “night night”. The transitions were certainly difficult but were always short lived. She cried for several long days after being fitted for her Pavlik, and had a hard few nights adjusting to the Rhino. Nothing a little time and TLC could not get her though. Hope this story can help someone in a similar situation.
AmeliaHi! I’m Nicola, Amelia’s mummy and I am here to raise awareness of DDH and share our journey. Amelia was born at 18:50 on 14...
Hi! I’m Nicola, Amelia’s mummy and I am here to raise awareness of DDH and share our journey.
Amelia was born at 18:50 on 14 December 2016, a Wednesday to be precise. She was delivered by a planned C-Section due to breech presentation at 39 weeks. Amelia was a stubborn baby and appeared breech from 20 weeks – and didn’t move once.
Due to the breech presentation at birth the NHS procedure was to send Amelia for a hip ultrasound at 6 weeks old, at St George’s Hospital (Tooting). We attended and the outcome was ‘Shallow Hips” – a follow up appointment was made with an orthopaedic doctor. At this stage we wasn’t told much, it seemed as though we were shaded a bit from the truth, but the truth was about to be revealed.
At 8 weeks old we was told Amelia had Hip Dysplasia in both hips and she was placed into a Pavlik Harness (the plan was for 12 weeks to help her hips stabilise) – but this didn’t happen. Following a further ultrasound it showed that it wasn’t helping and she was taken out of the harness. The orthopaedic dr. told us Amelia would need surgery!!!! As parents we freaked out, as again, we wasn’t told much. The procedure Amelia would be enduring was a Closed Reduction.
The Closed Reduction was performed in June 2017 alongside a tendonectomy, when Amelia was 6 months old. We had to be at hospital for 07:30am with a nill-by-mouth baby. At 10:30am we were told they were ready for us and led to the anaesthetic room. The most difficult part – watching your tiny daughter be put to sleep – and yes, I cried uncontrollably whilst holding her hand (nothing wrong with that!). We were told to come back in around 2 hours and to expect to see our baby in a Spica Cast. 2 hours went by and we went to collect our daughter, surprisingly she wasn’t in a cast. It was unsuccessful 😦 – the surgeon explained the surgery didn’t work and we would have to come back in January 2018 when Amelia was 1 year old for more surgery!!!
On 9th January 2018 we were back at the hospital at 07:30am with Amelia, this time awaiting an Open Reduction procedure. Yet again nill-by-mouth. The surgeon decided to operate on her left hip this time round and was told the operation would take around 4 hours. Again we watched our daughter be sent to sleep – it never gets any easier!! We returned after 4 hours to a very drowsy baby but this time finally in a Spica Cast – woohoo!! We were told by the surgeon following surgery that it was successful and went to plan as much as it could have *sigh of relief* – we spent 1 night in hospital and was allowed home the next day with a concoction of pain relief. We were to return Monday 14th for an X-Ray to check if the femur had stayed in the socket – which it had!
On 20th February we returned to the hospital for Amelia’s 2nd Open Reduction – which as above went exactly to plan. Amelia was put under a General Anaesthetic, her current spica cast taken off, washed and the operation was then carried out on the opposite side. We met with the surgeon following who explained again it went successfully. Again we stayed in 1 night and could go home the following day, we were instructed to return to the consultants clinic on the following Monday for an X-Ray to check the hip was still in the socket, and much to our relief it was.
Our next appointment is on 4th April 2018 where by Amelia will be put under a General Anaesthetic again but this time not for an operation – for CAST OFF!! We are so excited for this day, to see those legs again. For this will be the start of another part of our hippy journey with the possibility of being placed in a Rhino brace for night times. We look forward to our next stage.
For my own sanity and time out, I write a blog called The Journey of Hippy Amelia.
My aim is to raise awareness, share my growing knowledge around Developmental Dysplasia of the Hips – DDH and give you an insight into our Hippy Journey.
What we need to remember is every journey is different, every surgeon is different, every hospital is different, every child is different – although we are all aiming for the same end result – healthy hips – we need to ensure that we just remember that every child’s journey will never be the same (but may be very similar).
When Amelia’s hippy journey started in 2016, Amelia’s Daddy and I felt very much in the dark. We didn’t know what DDH was and felt very overwhelmed by all of the (or lack of) information we were given or not given.
Pavlik Harness, Hip Dysplasia, Ultrasound, X-Ray, Rhino Brace, Spica Cast, Open/Closed Reduction, Surgery and more – all of these scared us, mainly because we didn’t know what they all involved or what they meant for our daughter.
I’m hoping my blog will give you an in-depth insight into our ongoing journey, help you understand DDH more and provide comfort at one of the hardest of times in ours and our children’s lives.
IsabellaWhen Isabella (Bella) Garcia was only four months old, her mother noticed something strange – while changing her diaper and standing her up on her...
When Isabella (Bella) Garcia was only four months old, her mother noticed something strange – while changing her diaper and standing her up on her feet, Bella leaned to one side more than the other. Since Bella had been born with torticollis and plagiocephaly, conditions that are known for being paired with hip issues, she was a doctor herself and the mother of two other children, Cristina Garcia felt that it could be a sign of something more serious and took Bella to her pediatrician.
After a routine exam by their pediatrician showed none of the more common signs of hip dysplasia like a hip click, the pediatrician ordered an x-ray. Soon after, Bella’s father, a pediatric pulmonologist, decided to consult with his colleague, a pediatric orthopedic surgeon who specializes in hip dysplasia. The orthopedic surgeon performed the x-ray and an ultrasound on Bella and found the she did in fact have hip dysplasia. Since Bella was still young, the orthopedist prescribed the Pavlik harness for Bella and gave it a 95 percent chance of success. While the Garcia’s were happy to know that their daughter was likely not going to have surgery, they did quickly find out that life in a Pavlik harness is not always easy.
The Pavlik Harness
Lucky for the Garcia’s, Bella adjusted to life in the Pavlik harness quite quickly, however, the same may not be said for the rest of the family. Bella had to spend three months in the harness for 23 hours a day, which meant finding new and creative ways to dress her, change her diaper, and even fit her into a high chair, car seat or stroller. It also meant that she had to travel in the harness to weekly doctor appointments, on errands and even on the family vacation, and this often caused people to stare at her as if something was wrong. Her brother and sister had to learn how to hold her while she was wearing the harness, and her mom and dad wondered if she might have developmental delays.
Despite the struggles, which eventually became their new normal, Bella’s treatment with the Pavlik harness was successful and she moved on to the Taco brace, which is much easier on baby and family. After treatment with the Taco brace was complete, Bella continued to develop on a similar timeline as other kids her age. An x-ray when she was two showed no signs of hip dysplasia and her next x-ray will be at age 10.
Seven Years Later
Bella Garcia is now seven years old, and in first grade. She is very active and participates in gymnastics, cheerleading and loves art. She enjoys spending time with her sister (13), brother (10) and their new puppy Teddy. Sometimes looking back at photos of her in the Pavlik harness, she gets sad but then claims that it was because of her hip dysplasia that she is now so flexible.
MaliaMalia was diagnosed with hip dysplasia and placed in a Pavlic harness one day after she was born. Luckily we had a good pediatric resident...
Malia was diagnosed with hip dysplasia and placed in a Pavlic harness one day after she was born. Luckily we had a good pediatric resident who picked up on the hip clicks and we saw the pediatric orthopedist before we even took her home! She was my first born, and come to find out I had a family history of hip dysplasia.
The Pavlic harness didn’t work to correct her bilateral hip dysplasia, so at 10 months old she had a closed reduction and spica cast applied. The hardest thing I had to do as a mother was watch her be carried off to the operating room. Luckily, she had been given a sedative and was drowsy so the hand off for her was not scary at all. She came out of surgery with no complications. We learned all we could from the web about spica care and management.
I even scored a free spica chair from an online support group! Malia was a trooper, kids are so adaptable. She only fussed for maybe the first 48 hours after surgery, after that she was happy as could be. I took her everywhere, except the pool. Luckily the surgery was in November so she didn’t miss out on water activities. Diaper changing was a challenge initially, but with some great tips from videos I found through this website we got the hang of it. 12 weeks later the cast came off and she went into a rhino brace. She was in the brace initially full time then ‘weaned’ out of it over another 10-12 weeks. At this point Malia was 16 months old. She started crawling, we never got to that point initially because she was always in a brace, but didn’t take her first steps until she was 26 months old. Boy was that a celebration day!
Her next orthopedic appointment after she had started walking went well, we were told her hips looked good. One year later at the next ortho appointment we were told her right hip is subluxed again. I was devastated. Now she needed more intense intervention, a PAO surgery where they cut and reshape her acetabulum. Here we go again, this time I had found a book, Hope the Hippo, for Malia to understand what was going to happen. It was great, I highly recommend it to any parent with toddlers who are going through this. We had the surgery, dealt with the spica cast this time in the summertime. Once again, Malia did great!
We are now two years post PAO and so far so good! She will be followed through puberty to make sure everything develops properly. It has been a long journey, she still is a bit behind with gross motor skills, but happy and healthy!
Lily-AnneI was told at my 72 hour check after have my little girl that she had a problem with her left hip. My partner and...
I was told at my 72 hour check after have my little girl that she had a problem with her left hip. My partner and I were told that she would be referred to Children’s Orthopaedic and we would have appointment within 2 week from her birth.
On Thursday 22nd February 2018, we went to the hospital and lily had a scan on both her hip and we were told she had hip Dysplasia and she would need to fit with a pavlik harness for 16 weeks. We made our way to were the harness are fitted and a lovely lady came and fit lily with her harness and we were told she had to the for 6 weeks all day and all night and we would have to make weekly trip to the hospital for scan and to have her harness checked.
When we walked out of the hospital all I did was cry because I thought I cause lily to have hip dysplasia. After reading lots about it on the internet i knew it was nothing to do with what I did in my pregnancy or birth. We went for weekly check up and every week we got told that her hip were going back in and on week six we got told we could start to take lily out of her harness for a hour a day. After that we went to two hours a day for a week, then 4 hours a day for a week.
We were going to the hospital every 2 weeks for check ups and then we went to 8 hours day for a week and eventually we went to just wearing the harness at night for 12 hours. On Thursday 14th of June we went for a check and we were told that Lily could come out of her harness for good but we would need check up every 9 week in till her first birthday. Also we decided to put lily on a program to help with research in to hip dysplasia. She will be on the research program in till she 18 year old and just hope it help some other people children in the future.
Ariah-MarieOur journey so far… At 9 months old Ariah-Marie seemed to have a limp she had only just started move round table and standing we...
Our journey so far…
At 9 months old Ariah-Marie seemed to have a limp she had only just started move round table and standing we took her to the g.p but they dismmised us and said it was because she has only just began walking.
After speaking to other professionals I.e health visitor etc. we went back to the g.p and was referred to one physician and then from there referred to another.
On the 19th June, we were about to be dismissed again until we mentioned the difference in leg length so we were sent for an x-ray and found out she had developmental dysplasia of the hip. We were told she would need an operation and another referral was made to the surgeon.
August 1st was the day of the operation. Ariah had an open reduction of her right hip and was on a morphine drip for a few days.
On August 3rd we were discharged from the hospital. Life in a cast was different for us all but we have adapted quickly and Ariah has been so brave.
1 week after being home we notice a yellow/green discharge spent Friday in the g.p and back at the hospital. Ariah has an infection due to the cast causing a sore she hasn’t been in pain or shown any sign of having any problems. They cut the back of the cast off and took swabs and bandaged her up. The antibiotics are working her infection is drying up nicely!
We went to see the surgeon and he put some more plaster where they had cut it and have booked an MRI scan.
Our journey is only at the beginning but we have all adapted faster than I expected.
To follow our journey please visit our Facebook page: https://www.facebook.com/HipDysplasiaJourney/
BernadetteBernadette had a ‘clunk’ in her hip identified just two days after she was born. We were assured it would probably be fine but she...
Bernadette had a ‘clunk’ in her hip identified just two days after she was born. We were assured it would probably be fine but she was going to be referred for a scan on her hips to check. Our first daughter had the hip scan on account of her being breach and she was fine so we thought we knew what was coming.
We took her for her scan when she was one week old and there she was diagnosed with bilateral hip dysplasia. Her right hip was significantly worse than the left. It was definitely a shock despite it being the reason we needed the appointment in the first place. We were still very much in the beautiful, newborn bubble and this news just didn’t belong there.
The next week she was fitted with a Pavlik Harness. This was quite a shocking image having this tiny baby strapped up. It seemed to completely cover her tiny body. I just cried a lot as she was being fitted with it. I’d never seen anything like it before. She could still move in it which I wasn’t expecting and it didn’t affect her in any way. She was still a very happy baby. Nappy changes were difficult but we got used to them and we soon got over the fact we couldn’t bathe her or take her swimming and tried to keep as positive as possible.
She went back and forth to hospital for scans and consultations weekly, each just extending the use of the Pavlik Harness. Her left hip resolved itself and her right hip appeared to be improving just very slowly. However, when she reached ten weeks old, and she had been in the harness for eight of those weeks, our consultant discontinued it because it had been unsuccessful. Her hip was in a ‘subluxed position’ and the cartilage in her joint was now in the way and was stopping her making a full recovery.
We are now waiting for Bernadette to undergo closed reduction surgery and be put in a hip spica cast. I still don’t know exactly what any of this means. I have a vague idea but when I’m in the moment or the second I’m asked if I have any questions my mind draws a blank so we are very much taking it as it comes. It’s such a confusing thing to go through. It’s scary. As a parent, you never want your child to have to go through anything like this and it’s truly heartbreaking when there’s nothing I can do to fix it and there was nothing I could have done to prevent it either.
In the meantime she has no harness so we can bath her and dress her and take her swimming and just enjoy her.
We are waiting for her appointment dates to come through so I feel like we are stuck in limbo with it all at the minute. I keep clinging to the fact that one day she’ll have done it and will be back to full health and while it’s such a bit thing at the minute eventually it will have only lasted such a short time.
Laura-JaneTina~ I never thought I would ever go back and relive what happened when my daughter was born 23 years ago. This is our story and...
Tina~ I never thought I would ever go back and relive what happened when my daughter was born 23 years ago. This is our story and we want to share it to help others see there is light at the end of the tunnel and that its very hard to keep your glass half full but with love, acceptance, strength, determination and hard work it is possible.
10 months of trying to fall pregnant is long enough for anyone to wait when the pregnancy is all you want, a child of your own. You read that ‘wee stick’ and you find out you are pregnant. You know you have to wait many months until you can meet that little person you are carrying inside of you. Throughout the pregnancy you love this little person that you can’t even see. You imagine what they are going to look like and you pray that everything will be okay and they will be healthy. That’s all every mother wants. Having a pregnancy that had sickness the whole way through was a bit of a challenge. No history of birth defects on previous members of the family had been noted, as far as I was aware there were no warning signs or scans to detect what was to come.
Having renal colic at 35 weeks wasn’t easy and it induced my labour. The doctors stopped my labour and said it would be better to go full term for baby’s sake, which meant between 35 and 40 weeks, I had to attend the maternity unit at the hospital everyday to be placed on the monitor (this means they would strap the monitor to your tummy to pick up the baby’s heart beat on the screen). I also had to do a kick chart to monitor how many times the baby would move within 24 hours. One observation that was made was that there wasn’t a lot of amniotic fluid around the baby and she didn’t have a lot of room to move.
She arrived…Laura-Jane was born at 3:20pm on the 30th October 1994, weighing in at 7.11 lbs and was 52cms long. Following what I think are the ‘normal’ emotions after childbirth, feeling tired, overwhelmed and inexperienced, back on the ward I was left in my room with her, she was in this tiny cot all wrapped up tightly and all she did was sleep and all i really did was cry. I had waited so long for her to arrive and had so many things to tell her. Breast feeding was not an option, Laura-Jane was having none of it, She had her first bottle that evening and then it sort of went quiet.
The following morning when the doctors did their rounds at approximately 8:45am, my world was shattered. Laura-Jane was taken out of her baby grow and nappy to be examined by the doctor and the doctor checked her hips by lifting her little knees to her chest in a circular motion. The doctor then said the term “CDH”!!!!!!. WHAT IS CDH, I was thinking. I was then told by the doctor Laura-Jane had ‘clicky hips’ and that she was to have double nappies straight away. (so my disposable ones went straight out the window) All the questions you think you would ask have not even come into your head yet. A sudden feeling of panic, distress and sadness all rolled into one. The lack of understanding what CDH even was can not be put into words. Looking at your new born baby that now has this kind of disability that you cant see from the outside, and you ask why? why has this happened? where has it come from and what comes next?
Being told it was the left hip only was no reassurance, but thank-god the right hip was okay. The doctors team had their chats, they had explained everything to me but i didn’t take it all in as I was in shock that there was a problem with my precious baby daughter, as they left i felt very distressed with the news and when I looked at Laura-Jane, that’s when all the questions come flooding into my head and the tears streamed down my face. “I have let her down, this is all my fault, How will i cope? how will she cope? and what will the future hold?”.
We were discharged from the hospital 2 days later on the 1st November 1994. We left the maternity unit with paperwork containing many appointments for the coming weeks. Laura-Jane was due to have her first scan in the middle of November where we to find out how severe it really was and how life was about to change.
Read more about Laura-jane’s DDH journey on her personal blog:
CeciliaBeginning at 32 weeks of pregnancy, Cecilia was frank breech (meaning that she her legs were straight with her ankles by her ears). We knew...
Beginning at 32 weeks of pregnancy, Cecilia was frank breech (meaning that she her legs were straight with her ankles by her ears). We knew this meant we would need to have a c-section and were actually looking forward to the predictability of it all. Other than being breech, the pregnancy was without incident.
We arrived at the hospital on that June morning and got prepped to go into the OR. All numbed up, we waited to meet our little girl for the first time. Out she came and off she went to the warming table to get cleaned up and assessed. Her legs looked gummy and her feet were up by her ears and turned out. It looked strange but we assumed all was well.
Upon her first assessment by the hospital pediatrician, he mentioned that he felt a click and that he was able to pop make her hip pop out of socket. He mentioned the words ‘hip dysplasia’ but said we’d keep an eye on them. I googled and googled and tried to prepare myself. It didn’t sound so bad but was still a bit scary. During the following couple of pediatrician assessments while in the hospital, they mentioned that her hips were tightening nicely and that the relaxin was starting to clear her system. They had to try really hard to get that click and said that her hips might be just fine after all. So we started to relax.
At our first pediatrician appointment a few days after leaving the hospital we were told that all breech, girls (especially first born) get referred to the children’s hospital for ultrasound. Sounded totally routine so we scheduled out appointment for a few weeks later.
At 5 weeks old, off we went to get our ultrasound. Our appointment with the pediatric orthopedist was the following week. We were feeling optimistic and hopeful due to the physical exams all showing nice tight hips.
….but…our ultrasounds showed that we had severe dysplasia with full dislocation of both hips. We would have to go into a pavlik harness 24/7. During my initial research in the hospital, I had learned of the pavlik harnesses and had convinced myself it wouldn’t be all that bad. But getting the news we were going in one felt awful. No longer would I get to snuggle my soft, floppy baby. She would be in a stiff velcro rig. I held back tears as we strapped her in and I asked as many questions as I could think of. I struggled to fit her into her carseat and off we went. I spent the next week sadly saying goodbye to all the clothes we couldn’t wear because they didn’t fit over the harness. We had to relearn how to hold her and feed her.
One week later, our ultrasound showed that the harness was keeping her hips where they needed to be and we got the green light to take her harness off for up to one hour per day for baths and clothing changes. I coped by ordering pavlik specific clothing (underserved market here! Had to order from small companies in New Zealand and Australia). We soaked up our 45 minutes of post-bath snuggles a couple times each week as I basked in her wet noodle-ness.
Just like everyone told us, it got easier. It became our normal. It wasn’t a normal we liked but we knew how blessed we were that it was “just” hip dysplasia and that it could be fixed with some velcro. We didn’t go back for 5 weeks after that. We found support groups online, read as much as we could on IHDI, and talked to other parents who had dealt with this. We realized just how resilient our little girl was as she wasn’t fazed by any of it. We also realized she was much stronger than us. We struggled while she smiled away, not knowing any different. She started daycare in this time, at 7 weeks old. We struggled to trust that daycare would follow all of our hip healthy rules (spoiler alert: they did phenomenal).
At our 6 week follow up, we were told that her hips were looking really good. Her development was progressing and we were cleared to let her out of the harness for TWELVE (!) hours a day for the next 6 weeks. We were beside ourselves with joy and also terrified. Was it long enough? Would she regress? “What if’s” ran wild. Even worse, bedtime was the suggested in-harness time. That meant daycare got to enjoy our noodle baby and our time with her each evening was back in the harness. Again, she handled it like a champ. Pulling her knees up as soon as it was time to put the harness back on.
The night before our 12 week appointment, anxiety hit. What if she wasn’t ready to be out? What if they got worse? What if we haven’t done a good enough job? We were blessed with wonderful news that her hips looked great. We were allowed to remove the harness for good…for now. We are fresh into the process and are still waiting for 6 month xrays to tell us if we’re still on track. We know there is a risk that we’ll need future intervention. But we are thankful for this process. We had never heard of hip dysplasia outside of dogs. We learned a lot. Most importantly we learned how strong a baby can be and how quickly a family can bond together in difficult times.
We found great comfort in the International Hip Dysplasia Institute resources and couldn’t have been more grateful. We were able to find hip healthy practices, swaddles, and carriers through the website. We were able to learn what to expect and were validated by the stories of others. Our girl will always be a hippy baby but we know that early interventions means she might get to live a life free of long term hip pain.
JacobJacob was born early on February 9, 2019 at 37 weeks gestation. His birth went smoothly and it was the happiest moment of our lives....
Jacob was born early on February 9, 2019 at 37 weeks gestation. His birth went smoothly and it was the happiest moment of our lives. Shortly after he was born, we realized something was wrong with his left leg. He was happily wiggling his toes and the size of his leg looked fine, but the leg itself was bending the wrong way at the knee. This was unexpected and surprising, as all ultrasounds during the pregnancy were normal. We were immediately worried about our little one.
The next day, our pediatrician ordered additional imaging and that’s when we found out our son was diagnosed with developmental dysplasia of the left hip. During the pregnancy, Jacob’s ultrasounds always showed his little foot by his face. We thought it was the cutest thing at the time. Along the way, however, he seemed to have wedged his leg by his face early on in my belly and couldn’t get it down. It dislocated as he got bigger. At birth, Jacob didn’t seem to be in any pain with his hip dislocated so we’re extremely thankful for that.
Five days after Jacob was born, we met with our pediatric ortho doctor and had him fitted for the Pavlik Harness. I was devastated that he had to wear the harness 24/7, but my husband and I did our best to work around the harness and make sure we still had a happy, healthy baby. Bathing, nursing, and finding clothes that fit was difficult, but we made it work. We like to think our son thought the harness was a part of his outfits.
We met with our ortho doctor every 2 weeks to check the harness and had an ultrasound every month. His hip was slowly improving, with the alpha angle going from 41 to 56 to 57. At 15 weeks, we had an ultrasound that showed his alpha angle was 62. We were so excited to learn that our son was cleared to remove the Pavlik Harness!
Nowadays, Jacob loves being out of the harness and kicks like crazy! Our journey with the Pavlik Harness felt like it took forever, but now that he’s out and has healthy hips we are so grateful that he didn’t need surgery.
Thank you to this website for educating us about hip dysplasia and providing us with so many resources!
MylesI have been through it all with Myles. Not only does he fall into the 1 in 1,000 babies born with hearing loss but he...
I have been through it all with Myles. Not only does he fall into the 1 in 1,000 babies born with hearing loss but he has severe DDH. Unfortunately our ride has been a rollercoaster.
November 2018 we were given the first source of treatment, pavlik harness. My baby wore this for only 2 weeks to then find out it failed and he developed nerve palsy.
Between December 2018 and July 2019 we were given 6 dates for closed reduction surgery. This was what every parent fears the most, surgery. All 5 dates were cancelled due to trauma cases coming in the same times my son was scheduled to go in for surgery, now that’s what you call bad luck. Finally, the 6th date came around, Thursday 4th July.
We met with the surgeon who had told us after Myles having an X-ray upon the last visit (due to it being so long with no treatment) he needed to see where his joint was lay. He said he was confident he could proceed with closed but wanted me to sign a consent form to say if closed doesn’t work he will do open reduction on the same day.
I bucked up the courage to take my baby into the anaesthetic room (don’t ask me how) after many tears, looking away and moments of breaking down I walked away from the anaesthetic room and the wait began.
My heart was in my mouth I couldn’t speak to anyone, I never wanted my baby boy to have surgery.
6.30pm came and we were called into the recovery ward. On the way there we saw the surgeon who told us he’d managed closed reduction, in front of everyone I shouted ‘YAY!’ They did the least invasive surgery on my son and I was grateful and I thought our nightmares were coming to an end.
I was wrong, so wrong.
Meeting with my son was like I was seeing a different baby, my son is the most placid child you’d meet, he doesn’t cry. In the recovery ward he was screaming and in so much pain. He had bruises on his arms and legs where they failed to put the cannula in different places, he was in his spica cast. We took him back to the ward where he needed a lot of pain relief they even considered giving him morphine at one point.
I knew I was in for no sleep, he was in so much pain and was so upset. A few hours later we were told he was going for a CAT scan to confirm everything was ok and in place.
My worries were confirmed.
The next day, morning – someone who works under his surgeon (a dr) came to see us and told us the devastating news that my sons hip was still out of the socket.
I felt so numb and angry hearing this as his surgeon told us he’d proceed with open if the closed didn’t work on the same day whilst he was asleep, why didn’t he?
We have now been told he will be having open reduction in September when he turns 1. Beforehand we meet with the surgeon again in his clinic.
I will not be putting my son through another surgery with the chance of it not working, I can’t.
There are so many outcomes to hip dysplasia and we have learnt 75% of cases closed reduction works, my son fell into the 1 in 5 25% that it doesn’t.
Our journey continues. I’m struggling to believe there is a light at the end of the tunnel right now as all we have been receiving is bad luck.
Sienna’s StorySiennas hip dysplasia wasn’t picked it up at birth. It was missed by 2 pediatricians and then at 6 weeks old it was picked up...
Siennas hip dysplasia wasn’t picked it up at birth. It was missed by 2 pediatricians and then at 6 weeks old it was picked up on a scan at the hospital that she had hip dysplasia. Her left hip was very shallow and dislocated. She was then placed into a pavlik harness for 3-4 weeks and then had another scan which showed no improvement. We were then told it would be a closed reduction at 6 months old.
Sienna was still in her harness for a while as i waited to get permission to take it off.
When Sienna was 6 months old, and no word on a surgery data, I followed up with the hospital and got it schedule for next month. On the day of her closed reduction, after she’d been taken away to surgery, waited for her only to be told it wouldn’t work and that her hip is now very unstable and has a blockage. We now would have to be a open reduction when she is 1 years old which she is the end of October.
Really hoping her open reduction works even though it feels like a scary experience to see your baby having quite surgery.
NateAt 20 weeks pregnant, an ultrasound showed that my little boy was breech. They said he had plenty of time to flip around, but at...
At 20 weeks pregnant, an ultrasound showed that my little boy was breech. They said he had plenty of time to flip around, but at 36 weeks, he was still breech, and as we later learned was a bit stuck in this position so that his hips never had the chance to fuse properly. At 38 weeks, our 8.5 pound healthy little boy was born via C-section (due to breech positioning). We were so happy and overcome with emotion, that it barely registered when we were told within the first few seconds of his birth that we should have his hips evaluated. When the pediatrician visited us in the hospital the very next day, she confirmed that it seemed his hips were not functioning properly and may be dislocated. She encouraged us to call a pediatric orthopedist and get an appointment immediately. I must admit, it was very overwhelming to learn all of this immediately, and we really didn’t understand at the time what it meant.
We saw an orthopedist when Nate was just 1 week old and he confirmed bilateral hip dysplasia with both hips dislocated. As a mom, I immediately feared what this would mean for my baby, but the doctor assured us it was caught early enough it should be very treatable and that he was in no pain. We were told not to swaddle and to be gentle with his hips and I remember being so fearful even slightly maneuvering his legs for a diaper change. He was placed in a Pavlik harness after 3 weeks once the ultrasound confirmed the dislocation and the doctor was certain it was not going to heal on its own. He was in the Pavlik full time for 6 weeks, at which time we saw fantastic improvement in both hips, and then another 6 weeks part-time.
As other parents have noted on here, it is difficult to navigate the Pavlik, but within a short time, it did become a new normal for us. It was hard not taking it off, but Nate didn’t seem to mind. I was very emotional, but my sweet little boy was incredibly brave and strong. We found ways to make it work, we found an online community of support, we learned a lot and we advocated for our little boy. Around 4 months the Pavlik came off, and at 6-months, a confirmatory X-ray showed his hips were perfect! The doctor said it was one of the best improvements he had ever seen with the Pavlik harness. We were thrilled and thought this was the end of our hip journey.
Nate was a bit slow to crawl, and when he did, he dragged his legs behind him. As suggested, we had a hip follow-up for him at 1 year and while we fully expected good news, even though he was not yet walking, we learned his right hip growth had fallen behind and the femoral head on his hip was not ossifying as it should. The advice at the time was “watch and wait,” which made me nervous about what was to come, especially after I thought his hips were fully healed. My little guy did learn to walk at 15 months and by 18 months was running everywhere. I began to think that at our next visit we would get the good news he was cleared, but at 1.5 years, his right hip was still quite behind. The doctor encouraged us to be optimistic as there was progress, but in my heart, I remained scared. Nate is nearing his 2 year old check-up and I hope and pray his hips are improved. He still has trouble climbing, but otherwise, you would never know this active toddler had hip dysplasia.
I realize reading the stories of surgery and hardship that we are one of the lucky ones and I am so grateful for the early diagnosis and treatment that clearly made a huge improvement. But like may others on this page, I worry whether his hip dysplasia will ever fully be cured. I hope surgery is not in our future, but I write this as a story to tell all parents that supporting early diagnosis and treatment is essential and that no matter what your hip journey brings, I applaud you for your strength. Hopefully we all see the light at the end of this tunnel and can watch our children grow up happy and healthy.