My daughter was born in October 2004. She is beautiful and already very determined. She has unilateral PFFD, Akins class D (no femur or hip socket). We have already been able to find out so much about treatment options. Thank goodness for the internet. We have researched all the possible options from no treatment (prosthesis alone), to foot ablasion, and Van ness. We have seen 3 different surgeons. All of which give a different opinion on which surgery would be best. I have seen two different prosthesist which both advise leaving the foot intact but one says to do Van ness and the other says leave the foot as is. It makes this decision even harder when we can not get two specialalist to concure. We are leaning toward not doing any procedure. It is harder to find personal stories or information about this. We met with Dr. Mosely in California a few weeks ago. He was encouraging to say the least. If anyone has chosen not to do any procedure and just fit with a prosthesis, I would love to hear from you.
Comments
Doing nothing so far
I'm guessing from the date of your post that your daughter is about 7 months old.
Our daughter was first classified as a class D or C but at about two years old an x-ray showed the first signs of the femoral head and she got re-classified as a class-B. All the surgeons we spoke to up-to and including that day recommended waiting and doing only prostheses for a while and that's what we've done. Its worked out great so far (2 years) and the best success we've found so far were with prostheses that allow full knee and ankle motion (so far its essentially been a big shoe lift).
I know first hand that it is a difficult decision to make. You should keep in mind that no matter what your decision is, you have plenty of time to make it.
personnel experince
Hi, I am a 23 year old born with atkins class D, no femur or hip. When I was born there was a foot attatched to my leg. My parents did not amputate my foot to begin with and I wore a prosthetic brace that acted as a leg. When I was 3 my foot began to turn, so they decided to amputate it, they placed my heal on the bottom of my stump to use for a prosthesis. It worked out wonderfully, I get around really well.