MY LITTLE MAN JAMISON

My daughter Cobi is now 18 years old. She was born with PFFD in her right leg. She had next to no femur and no hip. We live in a small town in North Queensland, Australia and were fortunate to meet another girl who lived in our town (the chances of that happening where incredible). She was 10 years old and had the Syme amputation at aged 4. It gave us the opportunity to see what Cobi had ahead of her and it also gave Cobi a friend as she got older who “was just like her”.
When Cobi was 4 her ankle on her “little leg “was even with her left knee. Her Specialist in Brisbane suggested we consider the Van Ness Procedure. We met with Dr Ian Torode from the Royal Children’s Hospital in Melbourne who performs this surgery. He told us Cobi would be a good candidate for this procedure and explained the pro’s and con’s. We then went home to think about it.
To this day I don’t know how we ever decided to go ahead with it. I think a higher power helped us because it is such a huge decision.
So we went to Melbourne and at 4 Cobi had the Van Ness Procedure. She has never looked back since and has had a very active life. Having a bending joint made all the difference and cosmetically is looks like an amputee with a below knee amputation. Due to the prosthesis Cobi had for the 4 years before the surgery (which had her “little foot” pointing down) Cobi’s (back to front “little foot”) now points down so much that it is totally encased within the prosthesis.
Living in a tropical place Cobi has grown up in bathers and shorts and even as a teenager it didn’t bother her. In jeans you wouldn’t even now she had an artificial leg except for her limp.
I would not hesitate in recommending the Van Ness Procedure. In saying that though, we have been lucky that Cobi has never had anymore surgery, her leg has never rotated back and she has never suffered any real discomfort growing up. I think having a Surgeon and Limb maker who are very experienced and brilliant at their craft has made the difference for Cobi’s success.
Cobi has met a boy in America with almost an identical deformity and he also had the Van Ness Procedure. He has had several operations to rotate his leg back again and now uses a wheelchair most of the time due to pain when he walks.
Cobi has started to experience some back pain due to having no hip which gives her a large gait when she walks. This would still have been the case if she had the Syme amputation. Unless they can stabilize her hip (which is doubtful) the lack of hip will continue to cause discomfort.
If Cobi would have had the Syme amputation we would never know any difference. What ever you decide it will be the right decision, I’m sure. Feel free to contact me anytime.

Cathy Jones (Cobi’s mum).