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First of all let me start off by saying hi. My son Landon (2yrs old) has PFFD (class c). He is walking, runing climbing, doing everything any other child does. Right now his left leg is 4 inches shorter than his right(he uses a lift on his shoe), but as time passes that difference will become greater. He is also missing his fibula and the ankle causing him to have a club foot that cannot be corrected by surgrey. Along with this he is also missing his left arm above the elbow and his right arm below the elbow with 2 little fingers. However he does really well with what he has.

I am wrighting to ask for you imput. The doctors are now talking surgrey. Shriners wants to amputate his foot. The reason they gave me was because emotionally it will be better if he was younger when the amputation took place. I not sure if I can see there point. I guess I keep thinkin in my head that maybe five years from now a new procedure will be developed that may better help him. Besides it is my baby's foot (and I love it very much) He also has no hands so I don't see the point in taking a foot off that he uses. Has anyone had experience with amputation?

The other option that the doctors are giving me is Van Nes Rotation. Anyone had any experience with this?

Also I would love to hear any other experiences any of you have had with PFFD and the outcome of them. Anything you can teel me would be greatly appreciated.

Thanks so much


Have you contacted Dr. Paley from Sinai Hospital in Baltimore, MD, yet? He has given our daughter (and many others) options that other doctors would not.


We are trying to go see Dr. Paley. OUr insurance will not pay for out of state Doctors, unless it is a necessity. All the Dr. we have see here in LA have never seen a condition like my son has. And all the procedures the recomend doing, the reasons they give me for wanting to do the surgreys all begin with "well we think" But yet teh insurance doesn't the necessity in seeing another dr. But if nothing else we will pay out of pocket to go see Dr. Paley. I have heard a lot of good things about him.

You might want to talk to a physiatrist. They specialize in non-surgical treatment of things like PFFD and can give you an opinion about doing minimal surgical treatments or what options you have using just prostheses.

One prostheticist we talked to mentioned that one side effect of amputation at a young age is that you can get bone-spurs which can cause complications later in life.

One surgeon we spoke to said that he no longer recommends Van Ness rotion-plasty for PFFD since with PFFD there is a high probablilty of de-rotation. You can read about it 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,

Thanks so much for sharing this information with me. I guess I am just going a little crazy right now, because in my eyes he is fine he does everything he should be doing at this age. I just keep waiting for a dr. to say "he is fine just the way he is,no surgrey needed." I know it is time for me to start looking into his future but it is so hard for me to even think about amputation. But as of now I don't know how many other options we have because like your daughter my son's ankle wasn't completly formed. He also has a club foot and is missing his pinky toe.

But anyways thanks so much for the comment.

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

i have no clue what you as a parent are going through right now and its hard because there honestly isnt a "right" or "wrong" answer to it all. i was born with what sounds alot like your son, short femur, short tibia, no fibula, but my ankle is formed but with not full range. i have been doing bone lengthening since i was 4, so 15 years now. we have lengethend 17 inches and have about 5 left. i know for my parents, they said to amputate it before a certain age... my parents didnt want to do that so waited until this all came around... its been tough but we are almost done and i honestly couldnt imagine having the other done. it has been a long process but still had been worth it. if you have any questions, please email me!

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!)


Paige... My son korbyn goes to Shriners and they told me the same thing. And now we are glad we did it when he was young he was 10 months. And as they get older they are harder to keep happy and comfortable. He is 6 now and recently had to have hip surgery and was again in a body cast. It was much harder this time around. I wish we would have done this surgery when he was 3 instead of 6. If we knew then waht we know now it would have been done along time ago.
any ?'s feel free to email me at

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

Dr. Dror Paley and Dr. Shawn C. Standard are the best.

Rubin Institute for Advanced Orthopedics, the International Center for Limb Lengthening, Sinai Hospital( Baltimore, Maryland - Sini Hospital)

My son "Joshua" (8yrs) - had

1. Super knee (age 5)
2. Femur alignment and Femur lenghting Leftleg 2.3inch(age 6)
3. Tubia aligment (age 6)

My son is doing great, but it was a long road.
I moved to Maryland for 9 months and 8 month of appointments (checkups) xrays, etc... from Texas to Maryland.

There is no better place.

The Hackerman-Patz House is "a home away from home —designed with the patient in mind".

My story is long so please ask away..


Please have "Faith"