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I understand why my parents decided FOR me.

I'm 31 yrs old and my parents decided on amputation of my right leg (severe PFFD and severe tibia/fibula marlformation). There was really no other option on that side because of the severity. I wear an above knee prosthesis and function just fine (I have a 5 year old and a 4 month old). I have PFFD also on the left side, but only have a short femur, the lower part of my leg is pretty much OK. I did not have limb lengthening on that side (because there was really no necessity, since there was no other leg to match it). When I was younger, I had wished for limb lengthening on that side, only so that my arms woudn't seem so long. But, the physicians didn't want to compromise my hip and knee joint, which were functioning better than the thought they would. They thought the limb lengthening procedure on my 'good' leg would compromise it. Well, I'm 31 now, married, with kids. And I could really care less about my arms being a little long for my body. And being 31, I am starting to feel the result of a dislocated hip and a funky knee joint and I have a lot of hip pain now. I'm thinking this pain would be WORSE if I had had a major procedure like lengthening. So, long story short- since limb lengthening for me would have been mostly cosmetic, I'm glad I didn't have it on my left side. I hope this information helps. But understand, most of your children- whatever you decide- will grow up fine regardless. If you raise them as strong and confident people, there is little regret. Do I wish I had some pictures of my little foot before it was amputated? Sure, maybe. Do somedays I long for the long leg instead of my short one? I rarely think about it. And you know what? I'm a parent now. And I understand what it's like to make decisions for kids. And I think, regardless, my parents did an awesome job at facing the 'unknown'. And most of your kids will think the same.

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Hi, See:
http://www.pffd.org/node/268

and

http://www.pffd.org/node/269

Let this never happen to your child.
Ithas todecide itself when is old enough tu judge..

Regards, Stepp

Excellent points Jen!

I am 35 and my parents made their decision of amputation based on severely filtered facts from my doctors who already had their agenda set for me. In those days, there was no world wide web and people had to trust their doctors.

My procedures did not turn out to be successful in wearing an artifical leg, but the surgeries, pain and mobility limits have not kept me from being the person that I wanted to be. I cannot think of a single wish that I have not or am not doing. While I urge careful consideration by parents, I cannot think of anyone more qualified to make the decisions.