It might seem from my one functional foot, two hopeful parents post, that we made our decision right after our first trip to the RIAO. Really we didn’t. That trip eased a lot of our fears about lengthening but we still had reservations. I had my dream and my vision for my son but I did not want my wants to override his needs. He needed to be able to walk and live his life.
One thing I considered was that if I was in a terrible accident and they told me I would have to have a fixator for several months maybe more than once, or they could amputate my leg and save me from lots of surgeries and pain, I would still want to keep my leg. Amputation would be the last resort so long as my leg would be functional. Why should it be any different for my son, because he has a congenital birth defect. I realize that if you amputate early enough you eliminate a lot of the potential psychological damage and phantom limb pain but if there was a way to make Nicholas leg work for him, why not try.
I know many people will disagree and I mean no offense in saying this but I saw amputation as an easier option for us as parents. It would be less disruptive to our lives. Three external fixators and possibly other surgeries are a huge commitment and financially could be pretty costly. Amputation does not actually save money when you consider a lifetime cost of prosthetics and much of that cost would fall on Nicholas himself. At this point in the decision making process we had no idea what our insurance would pay or if they would pay at all. I decided not to even think about money in relation to our decision because I did not want it to be about money. We would make it work. What was best for Nicholas was not going to be a financial decision.
In the end, I think our choice was made out of hope. If kids like Nicholas had been successfully treated, it was not like this was a totally new experimental procedure. Yes Nicholas’ anatomy was unique but there was enough there to work with. In Baltimore I did not ask many questions about how the surgery would be done. It was hard to think about Nicholas’ leg actually being cut open. The how to’s of limb lengthening and reconstruction were not of interest to me then. So long as his surgeon knew how to do it. Why did I need to know what tendon they would be cutting or what nerves they would be releasing. I needed to know that they could do it. I needed to believe it would work for my son.
We could not let our fear of what lengthening would be like for Nicholas, over ride his right to keep his own limb. Steven and I have had moments where we questioned our choice but they have been few and far between. Those were our darkest moments, like when he came out of his first surgery with a tube down his throat, or when he was in pain after this recent surgery. Is there anything harder than seeing your child in pain? I don’t want to think of what is. I still wish with all my heart that I could have just given Nicholas my leg. Really and sincearly I would have it cut off tomorrow if Nicholas would be able to use it. I bet Steven would say the same.
Most days we are not only happy with our choice we celebrate it. We cheer after every visit to Dr. Standard. Looking at x-rays of Nicholas growing leg and healed ankle. Today we will make the oh so familiar two hour drive to Baltimore and be both anxious and hopeful along the way. We have not been there for three weeks. But I am never more at ease and excited than after Dr. Standard tells us everything looks great. I suspect Dr. Standard is as excited for Nicholas as we are. His smile says it all. And so does Nicholas’.