My daughter Faith’s hipstory has been quite atypical compared to most children born with developmental dysplasia of the hip (DDH). Faith was born May 21, 2000. She was my first baby and like most first time parents I was thrilled but scared out of my mind. One of things I worried most about was that she would be born with hip dysplasia. I have bi-lateral hip dysplasia, something I didn’t know I had until the age of 25. Somehow it was never diagnosed when I was a child and was then misdiagnosed over and over by my primary care physician from the time I started having pain and frequent dislocations at age 19 until I finally took it upon myself to go to an orthopedic specialist at age 25. The ortho I saw informed me there were no treatment options for adults my age and because I was too young for a hip replacement that I should just take Advil and learn to live with it. Consequently my concern about her hips being ok was one of the things I stressed most with her first pediatrician. When she was a few weeks old we switched pediatricians over another issue related to her care and were really pleased when the new pediatrician seemed to be so thorough reviewing our health histories and new parent concerns.
At her first exam after birth her hips were pronounced fine, just as they were at each subsequent well baby visit she had from then until we found out the bitter truth as she was about to turn 2. Faith had hit all her milestones right on time until her first birthday came and went and she gave no sign of walking or even coasting around furniture. When she did finally start to stand and eventually walk at 17 months she was very bow-legged, like a cowboy. I went round and round with the pediatrician about my concerns regarding this – could it be her hips? He kept insisting her hips were fine it was just because she was a chubby baby that she was late to walk and stood that way.
It wasn’t until she was just about to turn two and I was videoing her doing a silly dance on the coffee table top that I noticed something really strange. With each step she was coming down onto the insteps of her feet rather than the soles. I started watching as she was walking and it soon became apparent that it was getting more and more pronounced. Even though we were due for a well baby visit soon I called the pediatricians office and insisted on an appointment. I think the doctor was prepared to reassure me and see me on my way. Instead he finally admitted he had no explanation for the pronation that was occurring and finally referred us to the Orthopedics Department at Children’s in Chicago. Something was definitely wrong and it would turn out to be much more than we could have ever imagined - lesson learned: always trust the mommy instincts!!!
We met with Dr. Grayhack from Children’s on the day before Faith’s second birthday. We told him about our concerns and explained everything that we had observed up to that point. He examined her from hips to toes. Her initial exam seemed fine but he told us he wanted to x-ray her as a precaution because I had told him I have hip dysplasia. After the x-ray he came back with his nurse and told us he was sending Faith with her to play for a while and he needed us to take a seat. The x-ray showed that both of her hips were completely outside of the socket and the only thing holding her up was muscle and tendon. Since she literally had no hip sockets formed none of the usual indicators for DDH were present when she was examined. There was no popping or clicking when the hips were rotated and her leg creases were even. What this meant at her age was surgery was the only option. Dr Grayhack told us to go home and let it sink in; he knew it was a shock. He even gave us his cell phone number so that we could call and ask questions as we needed to.
When we got home I immediately started doing searches on the internet about hip dysplasia. What I found out was that 3 of the most common factors related to DDH was that it occurred in children who were first born, children that were female and children with a family history of hip dysplasia. This not only added to my initial shock but made me furiously angry, not only at all the doctors, including my own, who had failed to tell me this disorder could be inherited but at myself for never doing any research on this disorder that had not only effected my health and well being for so many years but was now going to be effecting my young daughter’s life in a profound way. She was the first born female child of a first born female who had bi-lateral hip dysplasia. If the proper protocols had been followed she should have had ultrasounds done of her hips at 3 months and x-rays at 6 months regardless of the results of her well baby exams (tests which were ordered and carried out on my son who was born just months before Faith’s diagnosis. Thankfully his hips developed normally) Instead thanks to the ignorance of the health providers entrusted with her care and her own mother who had never bothered to look for answers for herself we were faced with major surgery. I still feel sooo much guilt over this all these years later.
Faith had both a pelvic and a femoral osteotomy performed first on her right hip in August 2002 then on her left hip three weeks later in September. She was put into a hip spica cast that went from chest to toes for a total of 9 weeks. We were constantly amazed at how quick she adapted to the cast. She would literally Army crawl pulling herself in that heavy cast anywhere she wanted to go, she could also flip over from front to back to play or reach for things behind her. When the cast was removed it was followed by 6 months in a brace. She also had to endure months of physical therapy to relearn to walk again, first with a walker then on her own two feet. There is nothing more heartrending than having to sit by and listen to your little one cry during their PT sessions and know that it was totally necessary and there was nothing you could do to help.
The surgery successfully kept her hip in the
socket but the extreme rotation needed to keep it in place caused her left leg
to turn out. She also now had a leg length discrepancy and an obvious limp and
rolling gate when she walked. We pretty much knew we would eventually have to
do surgery again to correct this but in the meantime she needed to heal and
grow strong.In the years that followed we had regular follow-ups and watched and waited for the right time to move forward with the next surgery. We focused on getting Faith back into normal activities with her peers. When she was 4 we got her into the special needs pre-school program in our school district. She started pre-school in her brace and her teachers were just amazed by her ability to get around in it. The following year when school was out we signed her up for t-ball for the first time. She loved it and kept on playing every summer as she progressed from t-ball to beginner baseball and then on to softball. She always put her whole heart into playing to the best of her ability and while she was never the fastest runner she became a really great hitter and was always appreciated by her coaches for her positive and cooperative attitude. During her 4th grade year she decided to try club volleyball. The practices and tournaments were long and intense but she stuck with it and held her own. As she approached her 10th birthday it was determined it was time to do the next surgery to try to straighten out her leg and hopefully position it so the leg length discrepancy would lessen.
Faith didn’t remember a lot about her past surgeries, she had seen pictures of course but didn’t remember what it was like in the hospital, how she felt during her recovery or being in the spica casts or the braces. She was a little scared but she was ready to face it. She only asked that she could wait until after spring softball was over so she could play. We decided to respect her request and she had a femoral osteotomy on her left hip in July 2010. I was so worried how she would handle the pain and recovery post op and the mobility issues as a bigger kid instead of a toddler that we could hold, carry and handle all her personal needs for. Faith handled her post op recovery with good spirits and courage. She never cried or complained not even during those first PT sessions in the hospital. After the surgery she was put into a brace (no cast thank God!) and spent the rest of her summer non-weight bearing.
She started 5th
grade in a wheelchair with a walker for transitioning as needed. As the weeks went
by she progressed to crutches and then a single crutch and then finally by
winter she was finally back to full weight bearing status. Just as we were
approaching her next follow-up and hopefully the all clear to resume all
activities she started having pain in her leg. Even thought she had an appointment
coming up in a month those mommy instincts told me “do not wait” and I learned to
listen! We called her Dr. Grayhack’s office and got her in right away. They had her get an x-ray as soon as we got there. When her doctor and his nurse came into the exam room her doctor looked absolutely stricken and we knew something was very wrong. It was like I had a flashback to her first appointment. The only difference was Faith was allowed to stay this time and we were already sitting down. The metal plate in her leg had snapped in half! This is something that just never happens! Since then bone had not finished healing completely either we were back to square one. She was immediately put on non-weight bearing status until we could get her into surgery. Everything had to be redone with the addition of bone grafting and a bigger, stronger plate. He also decided to keep her non-weight bearing longer and be more conservative on the progressive weight bearing as she healed.
Faith cried in the exam room when we heard the news, but so did her dad and I. Her doctor looked like he would have liked to as well. By the time we left the tears had stopped and she was ready to face the challenge of another surgery. She had surgery again a few weeks later in March 2011. Afterward she was back in the brace full time. She had about a week or so of recovery after we got out of the hospital and then was tutored at home for a few weeks. She went back to school in her wheelchair and brace. She finished out the year and even went to the 5th grade dance in her wheelchair. She was disappointed to have to miss the softball season that spring but still cheered her brother on during his baseball games.
She finally got off of her crutches for good the week before her first day of Middle School. They school gave her the key to use the elevator since most of her classes were upstairs. She kept it just in case but decided she would rather take the stairs because she felt it would help her leg get stronger! She spent the next few months concentrating on her PT and getting her strength back so she could play softball. When spring came she was able to play softball again. Her joy was evident to all who watched her play. One of her former coaches told my husband how happy he was to see her back out there on the field after all she had gone thru the previous year and that he wished that the players he coached had even half her heart. As softball season started winding down she told her great-grandmother that she wanted golf clubs for her 12th birthday. Faith had been doing some golfing with her physical therapist as part of her therapy and wanted to take lessons and learn how to golf for real. When softball let out she had golf lessons and she went out golfing a couple times w/ a family friend.
As the start of 7th grade approached Faith decided she wanted to do Fallball. She also tried out for the school volleyball team. She didn’t make the team but the coach asked her to be manager, which meant she went to all the practices and games with the team and along with keeping stats was a ball shagger – which means she had to run after the balls that got away from the girls during practice. There were many days that she would go straight from volleyball practice to softball. She also participated in a school walk to support the troops and though it was hard for her to walk such a long distance she was determined to finish and even refused the teacher’s offer to send a bus back to pick her up and take her to the finish. Her friends that had already reached the end came back and walked with her until she made it all the way to the finish. Things were going pretty good, life had gotten back to normal and she felt like a regular kid again.
Then I got one of those phone calls at work that parents dread. Faith had fallen during gym and was hurt. They were doing volleyball drills and she took a step forward to serve against the wall and her leg just went out from under her and she went down on her knees hard. Except it weren’t her knees that hurt, it was her right hip. The x-rays at the ER revealed that she had evidence of a chip fracture. A very small fragment of bone had chipped off from the femur. I had them call her ortho immediately and the ER nurse actually texted a photo of the x-ray to his phone. It is not an injury that required surgery or immobilization but she had to go back on crutches and be non-weight bearing for awhile. Having to go back on crutches hit her hard. For the first time she really got upset and had a meltdown - It was unfair! Why does stuff like this always have to happen to her! How come no one else has hip problems like this! I hugged her hard. I told her it was just an accident and lots of people have accidents and wind up on crutches. That it was true not that many people have had them so soon after spending months dealing with wheelchairs, walkers, and crutches like she had but that just meant she would already be a master at them. I reassured her that it wasn’t going to be as hard or last so long as it had after her surgeries and that she had always been so strong and not to let this get the best of her. I also teased her that she knew other people had hip dysplasia problems – after all she was sitting right next to me and I was still recovering from my 3rd hip surgery! She laughed and said she meant other kids but she also wiped away the tears and gave me a big hug. She was able to shake of the bad feelings and go right on with her life with barely a hitch. Thankfully the crutches only lasted about 3 weeks this time.
Throughout the school year she went to the teen dances at the park district every month. She loves to dance and always tells me that while her friends like to walk around and chat she thinks that is boring and the music makes her have to dance! This spring she signed up for Girls on Track – the middle school level of the Girls on the Run Program. The GOTR program uses the foundation of training for a 5k race to teach girls to feel confident in themselves and how to establish positive peer relationships. She had practice every Tuesday and Thursday to train for the 5k. She also started softball season so she was having softball practice along with race practice. In the midst of both of these things she participated in a 24 hour walk for a pediatric cancer charity at her school. Each team had to have at least one walker going at all times. I supervised a 4 hour shift and she told me she was going to walk all night! She took every one of her shifts and even walked extra shifts sometimes with her friends. If her hips started hurting she did half shifts until she felt better.
In May of this year, during the weekend that occurred just a few days before her 13th birthday, Faith proved to the world that with hard work and heart anything is possible. Friday night she had a birthday slumber party with her friends and danced all night to either the IPod or Just Dance. Saturday she played softball and pitched the last 2 innings of the game (earlier in the week she pitched the entire game and it was their first win of the season). Then Sunday morning she had the GOTR 5k race. My friend Mary had agreed to be her running buddy. Mary is an experienced runner, a great mom and most importantly cares greatly about my daughter. My biggest fear as race day approached was that she wouldn’t be able to finish. During the practice walks I had been doing with Faith around the 2 mile mark she would start having pain in her right hip and would want to rest or stop. My next biggest fear was that even if she did finish she would be dead last coming in after everyone was long done. I had been giving her a couple of “you can do it” pep talks as the day of the race approached. I talked to Mary and she reassured me that she knew just how to pace her and it would be fine.
As the race started I thought my heart was going to pound right out of my chest! I figured it would probably take Faith about an hour based on her previous times even though she had never finished the whole 3.1 miles before. I tried not to get too anxious but as girls started crossing the finish line I got a lump in my throat and anxiety pooled in my gut. I was so worried! My mom decided to go wait further down before the last corner the runners would turn at for the home stretch in case she would need extra encouragement. The clock had just flipped past the 1 hr mark when we heard the DJ announce that the last runner had just made the 3 mile marker. I was just thinking to myself well if she is last then at least it won’t be too much longer when my husband shouted “There she is!”. Around the corner she came, jogging in at a steady pace, huge grin on her face waving to the crowd cheering the runners. As she ran past us I tried to snap pictures but my hands were shaking and tears were running down my face. My mom came running up to us and she was crying too. She told me Faith had run the whole last length smiling all the way and as she passed them by she had ran over and high-fived her and our son Andrew, her younger brother.
When we caught up with her and Mary on the other side of the finish line Faith was so excited. She told us she felt so accomplished and she wanted to do it again next year. Mary said she did great. They had paced themselves alternating between jogging and then walking, took their water breaks and stopped to pose by the mile marker signs to snap a picture. While many of the girls around her looked like they were worn out and miserable Faith’s face glowed with joy and happiness. Her final running time was 1 hour and 2 minutes. As we hugged and talked and took more pictures of her with her race medal we finally heard the DJ announce the last of the runners had crossed the finish line.
My biggest concern in sharing Faith’s story is that other parents of children with DDH will be discouraged; after all we didn’t have a miracle surgery that resulted in a Super Sparkly Happy Ever After. While it is true we would have much preferred to have had that happen instead we had some failures along with the successes treatment wise and numerous setbacks. It is a journey that has not been easy but I hope with all my heart that other parents reading this can look past those things and instead be encouraged and inspired by Faith’s story. Mary told us after the race that Faith had been awesome, that “she never said I can’t and she never stopped smiling”. That is Faith in a nutshell. She never says I can’t, she always tries her best and she never lets hip dysplasia stop her from trying new things or doing the things she wants to do. If you were to ask her about her interests she would tell you that she isn’t really into girly stuff, that she is more “athletic” and into sports. She still has a small leg length discrepancy and walks with a rolling gate. She will never be the fastest or the star athlete in the usual sense as you think of those kinds of things, but she is the most courageous, strong and determined girl you will ever witness on the diamond, the course, the court or even on the track.
I am not sure what the future will bring. At her last ortho visit
about 10 months ago we were given the option to consider a procedure to try to
even up the leg length by stopping the growth of the longer leg for a short
time so the other could catch up. We have been very reluctant to put her
through another surgery and have been leaning away from doing it, she uses an
orthotic with a lift right now. There was also something questionable about how
her right hip was looking in the x-ray. Her doctor consulted with some of his
colleagues and the consensus was to just watch it. Since then I have been worried
and have been feeling that niggling feeling of dread in the back of my mind because
over the course of the last year she has been having pain in that hip more and
more during extended activity.
As it turns out I was right to worry. In the week since I wrote
that last paragraph we had a follow up appointment with Dr. Grayhack. Her right
hip socket has become very shallow & it is looking like she will need
surgery again. Dr. Grayhack also feels very strongly we should do the procedure
that interferes with the growth plate to even out her leg length discrepancy
which he says is about 2.5 cm. That procedure itself is a minor one compared to
everything else she has been through, however if she is going to need the hip operated
on as well we could do them both together. He has referred us to another orthopedic surgeon
at Children’s that specializes in hip deformities in adolescents & young
adults. We will be seeing him on June 20thand hopefully we will have
a better idea about what the future will bring. No matter what happens though,
I know with all my heart she will persevere with the same amount of courage and
the positive outlook that she has always
had. We will keep moving forward one step at time no matter how hard they may
be and we will not let this disorder get the best of us.
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