William’s Story

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. Paul Sponseller, Chief Pediatric Orthopaedic Surgeon of Johns Hopkins Hospital. Dr. Sponseller 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.




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14 Notes

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  1. Andrea L says:

    Oops! William was 4 1/2 months when he had his first surgery, not 2 1/2 months.

  2. Lorraine Landauer says:

    William is our grandson and we could not be more proud of him. He has shown more courage than I can say,he constantly amazes us. Keep it up Will.

  3. robin huhman says:

    Good for your son!! I am 46 and on second revision. i had my first total hip at 26. i admire my parents for never overprotecting me and letting me do what i thought i could. Kudos to you for doing the same with your son………..i also had bilaterlal ddh. at the time one of the worst cases my dr had seen…………many surgeries later…..i have had a wonderful life and wish the best for your son

    • Andrea L says:

      Your comments mean so much to me. It’s nice to hear from someone who was in a similar situation.

  4. Beth says:

    A very inspiring story–thank you for sharing it, and best wishes to William!

  5. Arthur (Bud) Harper says:

    William is my grandson and amazes me with his determination to do as other children. He does things that you would think should be difficult, but he is highly detemined to be competitive. Stay strong will Will.

  6. Yvonne Dempster says:

    How proud you must all be of William, he has coped better than some adults would have. We are just in the process of considering the pros and cons of an op for my grandaughter Bow, she has very mild DDH so its not straight forward.

    • Andrea L says:

      Braces, and spica casts never bothered William. The spica casts look uncomfortable and scary. It affected me more than him. Diapering was harder, but I bought Poise pads to stick in the spica cast, then I put a diaper over it. It kept him cleaner. He was a very happy baby. I was surprised he healed so quickly and was so happy through his first two surgeries. My husband and I placed him in an extra wide sports stroller and took him everywhere. He felt a lot of pain from his surgery a few months ago. I’m sure he won’t forget it. However, the pain decreased each day. He is happy he went through with it. His hips will never be perfect, since he has a terrible case of DDH, but each surgery is a success.

    • Andrea L says:

      Also, best wishes to Bow.

  7. Andrea L says:

    I am also grateful for William having Dr. Sponseller as his orthopaedic surgeon.

  8. Michael, Victoria, Flora And Allegra Knowles says:

    Well done William. We send our love from snowy Scotland xxxx

  9. Mollie Morris says:

    William and his family are our neighbors and we have had the pleasure of watching this amazing young man grow up. William and my son have become great friends and in doing so we have gotten to know him and his amazing family. William is such an inspiration, and has an amazing drive! He has such a wonderful support group, and I commend his parents for letting William be the social, active, strong young man. Keep pushing William!!!!!

  10. CYNTHIA MINTOOR says:

    Thank you for your story it inspired me. My son will have his operation on the 16th September 2014. He is 7 years now. He was diagnosed with Perthes in both his hips when he was 3 years old. He will be having chiary osteotomy operation in his right hip. I am so scared!

  11. Argaw says:

    Thank you for sharing William’s story. He must be very proud of his parents for doing everything they could. I can see that you never gave up through all those difficult moments. I live in a developing country in Africa. I am father of a beautiful 2 7/12 daughter.She is growing well & very active. But I just noticed a painless limp on her left a month back with the left lib rotating outwards. I took her to a pediatrician he made no apparent diagnosis. I kept on reading and consulted another pediatrician. He had a clinical diagnosis of bilateral DDH. My daughter’s creases are symmetric and her legs are equal, but she had tiptoed on both sides when she started walking. I am afraid, if the bilateral DDH is confirmed,it is already late for treatment except open surgery. I feel really bad as I am reminded of the fact that there may not even be a specialist capable of operating on her in my country let alone the prognosis. Do you think she will benefit from osteotomic surgery at this time ? Or just wait for chances of total hip replacement later in life ?

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