New Here

My daughter has bi-lateral pffd class B and is 21 months old. Just 2 months ago she had her first surgery where they amputated both of her feet. They were both clubbeb and missing toes. We also went to Shriners and were told the same thing regarding surgery at a younger age. This is my feeling and I have talked to numerous kids at the CAAP program at Shriners about this. They all did not regret the choice the parents made and know it was for a good reason. It is a very difficult decision to choose amputation for a parent to make about thier child, and each person has thier own circumstances to weigh before they can go forward. We personally felt that this was a good decision based on the answers we recieved from the doctors we saw and talked too. The conclusion we came to is that for prostetics to fit and function the best possible way we felt that was the best decision. Now regarding the age, it basically comes down to your beliefs. I believe that my daughter will remember the first time she walks in her new prostetics before she remembers her first surgery. The happiness and confidence she will gain walking independently will outweigh the pain she may have gone through during surgery. Just like life you make decisions that may be difficult but ultimately can reep rewards you never could have imagined.

Good Luck,
Austin

My son who is now 19 has severe PFFD with little hip stability.Based on our experiences I would be very cautious about surgery.The surgery that my son had to try and stabilize the hip was complicated,expensive and painful, and unfortunately achieved nothing.

As you say, each case is different,but our approach should have been to seek the best prosthetic managament from the outset.

You can look forward to your child growing up into a wonderful person

Hope this helps

Paige - my daughter (Lisa) hears the same message regarding amputation when she visits Shriner's with her 2 year old son (Damian). Personally I think it simply makes their job easier for building the prosthesis. Lisa will not allow the amputation for the same reasons you mention in your message. We both feel technology is advancing and don't want to do anything so drastic that we'll regret later. Van Ness Rotation is also out of our conversations - absolutely not an option she wants to consider. Shriner's does a good job with fitting Damian. He moves around very well whether he has the prosthesis on or off. Damian's discrepancy is large - he's missing about 75% of his femur and we've been told lengthening would not be an option. The prosthesis gives him just what he needs for walking and running and if he doesn't want to wear it he simply takes it off and "walks" without it. Stick with your gut feeling on what you feel is best for you and Landon.

(Ironically my 19 year old son is named Landon!)

Nancy

Paige- Our daughter Gabrielle was born with Aiken's Class D. She has little to no knee or femur. We took a trip to Shriners in LA when she was 6 months old as a second opinion. They told us that are only option was for an amputation after she turned 2. We see a doctor here in Tucson that used to work for Shriners and has dealt with this. Nobody could tell us anything before she was born and then that night he came in and said this is what she has and most likely the she is a class d and he was right. We didn't want to do anything without seeing what someone else had to say but the fact that Shriners didn't want to do anything in tell she was older wasn't what we wanted. We chose to have her foot amputated when she was almost 9 months old. The hardest and most difficult decision that we have ever made. We made several casts and molds of her foot and feet together so she will know. She was fitted with her first prosthesis when she was 10 months old and walking by 16 months. She follows her older sister around everywhere and manages to keep up really well. She is little over 2 now with straight leg prosthesis and quickly going through this one. Our next challenge will be putting a knee joint in it. I have gotten off the path but if you have any questions or would like to see some pictures feel free to email me at allg_naz@comcast.net.
Amy