My five year old son, Cai, had bacterial menegitis as a baby and it caused a lot of tissue damage in his legs. We had multiple skin grafts and a muscle removed from his lower leg when he was recovered from his illness at Shriners Hospital in Cincinnatti. Since then he has been seen regularly at Shriner's in Lexington to monitor the development of his legs. X-rays from early on showed that his bone growth plates in both legs were severly affected by the menegitis and the head of his femur bones have failed to form correctly. He is extremely active and in kindergartin but it has become increasingly painful for him to do all of the things he would like to do. The doctors at Shriner's have recommended bilatteral above the knee amputaion with knee fusion and suggest a Boyd procedure. They consider him to have PFFD because of how the menegitis affected his growth plates in his legs. He is, at age five, at least 6 to 8 inches shorter in his legs than his torso size indicates he should be. I am struggling very hard with this decision and have been researching options as much as possible. I have read a lot about Dr. Paley and have made an appointment for a consultation with him in September. If anyone can share any advise on outcomes of this type of bilateral above the knee ampuation and also the lengthening process so I can get a better idea of the different challenges either procedure can hold, I would really appriciate it. The doctors at Shriner's have told me that the earlier the amputation is done the better chance he will have at adjusting fully to the prosthesis and learning to balance. Cai is very strong and active and I just need more information to help make a decision that will allow him to have the most functionality possible.
Bilateral AKA
Hi Shanna,
My name is Nathan and I am 26 years old. When I was born, I had bilateral PFFD along with some other complications (I haven't gotten the medical records yet, so I don't know EVERYTHING that was going on). I had surgeries on and off up until age 6 when they amputated, then I had more surgeries until age 10. I know in all I was put to sleep for surgery I think 27 times. It was very hard for me as a youngster, but my parents still pushed me to make good grades. They fitted me for prosthetics, but because of my hips and back, I could never walk without crutches. I still got involved in marching band in highschool (played on the drum line, in a wheelchair that they rigged up for me). By age 20 I was done with the crutches and moved to a wheelchair, without the prosthetics. This has allowed me to enjoy life more. I was able to carry my baby around (she is now 6) in my lap, and do more stuff with her than I could have with the crutches. I had the ability to go to college, but I chose a different path at the time. I now am loving my life with my wife, my 6 year old daughter, and 16 year old step daughter. I work at walmart, but I'm not just a door greeter. Within the month and a half that I have been working there, I am now assistant manager over lawn and garden. I drag the water hose, load mulch and soil for customers, bricks, etc. I love swimming, kayaking, canoeing, camping, and all of our church activities.
I don't know your religious background, but one verse that has stuck with me is "I can do all things through Christ who strengthens me". This has gotten me through things that I don't even think people with 2 good legs could have gotten through. Encourage your son to do things that you may not think he can do, and please, never hold him back because of YOUR fears. As an amputee, we need encouragement and freedom to at least try things. I know that as long as you do not treat him any different growing up than you would another child, that he will grow up to be a strong man and be able to do anything that anyone else can. I am put to the test daily, and I always try to come out on top.
Thank you for posting and my family will be praying for yours.
Nathan Sanders
Bilateral Amputee