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Beginning Our Journey

We recently adopted a 15 year old with phocomelia of UE and PFFD. Yesterday was our first appointment with an orthopedic surgeon to discuss the options we have for our daughter at this point. She hopes to continue with leg lengthening procedures despite her hip most likely needing reconstruction and her knee without ligaments. Her foot is fully functional even though her left leg it is 6-8 inches shorter than her right. She also has scoliosis that causes her pelvis to turn. The MD stated he is cautious in his approach and recommended just amputating the foot and getting a well fitting prosthesis. He also recommended getting a second opinion. I was looking at maybe going to a Shriner's hospital but see here many of you have not had success. Are there any PFFD experts on the west coast?


I do not know of anyone on the west coast, but do know of Dr. Paley who is now is West Palm, FL. There is also the Rubin Institute for Advanced Orthopedics in Baltimore, MD. My daughter was under one years old and amputation was discussed. I figured that is so final. I wanted to make sure there wasn't any other option. I went see Dr. Paley and was given hope. I wish your daughter the best. I know this is very stressful for you and your husband. These children are so remarkable. She will delight you her whole life. Take care.