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hi my sons 10 months kenzie and has pffd he also has a lot wrong wit his hip n docs say they will have 2 take his hip away n replace it with his knee or they will fuse it til his thigh which will mean he wont b able 2 move his leg from side to side,,, they have also said lenghening wont work and have gave us the option of amputating or a rotationplasy(foot turned backwards) its so confusing,, rotationplasty semms like a good option but im worried what kenzies reaction will be when hes older , will he blame me? i


Hi my husband and I went thru the same thing (worrying about our decisions) so we just simply decided that when Tai is old enough to mae the decision for herself then she can. If your son will have a better functionally of his legs and it will turn out better in the long rn for him I would o ahead and do it. At some point I'm sure he will understand what you did and why you did it even if he is a little angry at first.Ou daughter did not *need* to have any surgery at leats till now , there is some instability in her hips now so we shall see how the future plays out. hope this helps : )


My parents made several choices medically for me that were REALLY bad, BUT I don't blame them. They made decisions based on the information/misinformation given by the Shriner's Hospitals in St. Louis and I truly believe St. Louis doctors gave them the best information they had even though it would turn out to be far from the latest options. My folks couldn't afford a 2nd opinion, didn't have the internet to find other parents/children and wouldn't have known where to find the top specialists like Dr. Paley. My parents did no less for me than they would have done for themselves if they had the condition. I cannot say I ever considered blame. I did ask questions about the info that they were given & looked closely at my medical record. If there was blame to be given, then it would be for the lack of a complete care plan telling my folks the WHOLE picture of all surgeries, etc that were in our future.

Hello this is really similair to my husband who is 36 now xxx

He has a fixed hip from an operation when he was younger. He has 5/6 inches of femur, his knee almosts acts as his hip and he swings from the knee. He still has his foot, but its a long way from the floor and has an extension prosthesis which is foot fits into.

He was offered amputation when he was about 8 or 9 to make it easier to make false legs, he declined.

You can't really know if your little one will criticise the choose you make - you can only do your best to make an informed decision xxx

Bring your son to Dr. Paley. Regardless of your ultimate decision, you will be able to tell your son later that you consulted with the most experienced surgeon in the field.

Thanks for the helpful post.