My name is Christa Clawson and I live in Saint John, NB Canada. My husband John and I had a beautiful baby girl 6 weeks ago who's name is Ella Kathleen and she was born with PFFD in one leg also in that same leg, she has NO fibula either, but has a great working foot.
We saw our first doctor about Ella May 16th and we are so overwhelmed with this disease. I immiadatley started researching and came across this blog. I would really like to hear from other people living with this disease and or parents of children to let us know how you deal with this. Also we were told of the 3 options that are available to Ella for future development. Is there anyone out there that has had either the Leg lengthening, amputation of the foot with prosthetic and or Van Ness procedure that will give us some information, pros and cons to help with our decisions.
I really need to talk about this to keep my sanity, please let me know if anyone out there has any further advice.
Christa and John