Nevaeh

My daughter was born with severe Congential Hip Dysplasia and PFFD in Jan of 1998. I was a young mom and believe me, I know how hard it is. The worst part for me was doctors telling me there were no other avenues of approach for my daughter, that I had to make the decision for her to amputate. And they made it sound like a day in the park, too, as if they somehow could even imagine the magnitude of what they were asking me to do. Like you I cancelled her first amputation appointment. Actually, I cancelled four. And we never had it done. She was missing 3/4 of her right femour and had neither hip and somehow I knew there was someone who could help her. I am not going to lie, it took years. And fortuantly we stuck it out. About 2 1/2 years ago she was seeing a doctor who told us she must amputate or be paralized from her waist down. I went into a frenzy and sent her profile and xrays to about 6000 doctors world wide. Only one responded with a positive plan that did not involve amputation. Since then she has been seeing Dr. Dror Paley at the Sinai Hospital at the Ruben Institute for Limb Lengthening. I highly recommend BEFORE you go through with amputation, you put the word out and see if there is someone who can help. I don't know about the specifics, however, I will say this... My daughter, Kylleighan, turned 10 a couple of weeks ago. Her leg is already 3 1/2 inches longer and she has one new hip. She no longer needs any assistance to walk. She can walk, run, skip, hop, jump, you name it. I committed myself to allowing her to decide and it has been a long, exhausting road. She decided, after talking to the kids at the hospital, to go through with Dr. Paley's program, even knowing up front how painful it could be. She is still undergoing this process and has several more operations before she will be through. She doesn't regret anything and she has yet to give up her childhood, only alter it slightly. Even with the lengthening bar in, she goes to school and plays outside with other kids. They can also help with the club foot and any other abnormality that has developed. I don't live in FL, rather I live in MD so that my daughter can be closer to the hospital. However, if you would like to talk to me or my daughter about the process we would be more than happy to answer any of your questions. Or you can bypass the middleman and go to www.lifebridgehealth.org and look around on their website. In addition, costs can play a huge factor. I am in the military and the burden of health insurance is not so much a factor. The hospital has programs to assist with that sort of thing and they also have a halfway house to stay at. There are a lot of families, like mine, who understand first hand how hard all of this is and we are more than willing to help in any way possible to make it a sucessful endevor for your family. I don't really ever do these blog things and I am completely computer retarded, so if you would like to e-mail me, my address is Jessycca21@yahoo.com Overall, keep this is mind, doctors can say a lot of silly crap that sounds really smart and intense, however, they can NEVER replace a mom's instincts. If fact, most pedatricians will tell you they rely on those gut feelings from mom's everywhere. So if you are telling you it's not a good idea to do this, then don't and trust yourself enough to make the best decision for you and your child.

My daughter just turned 2 at the end of January. She had amputation surgery on her left leg the day before her 1st birthday. She was up and trying to play just a few hours after surgery and didn't need much for pain meds. She was released from the hospital the morning after surgery. She didn't walk until 20 months of age, after physical therapy to learn. She was in a Hip abductor brace up until the surgery. So, for only walking for a little over 4 months, the girl can run and play like any other child and people don't even notice when she has pants on. She has Finding Nemo on her prosthetic right now. They can change them with each new prosthetic to make it fun for the kids. We have never had a day where she hasn't wanted it on. She even walks on the stubby (hope this doesn't offend anyone) very well. She has other things with that same leg as well, but she is doing extremely well and we don't forsee any problems in the future.
Hope this helps, you are not alone. There are many sites out here on the web for support like www.limbdifferences.org They deal with all kinds of limbdifferences with legs and hands/arms. Yahoo has some groups also that you might want to check out.
Amy
*mother of 5, the youngest having Fibular Hemimelia (completely absent Fibular bone), bowed and shortened Tibia, short Femur, Hip Dysplasia and the most beautiful smile ever!