New Brace, Old Questions

IMG_5570I am so excited to report that Nick not only has his new brace but he is also wearing two shoes that are the same size thanks to the brace and shoe insert/filler. It was exciting and strange to see this for the first time on Tuesday. By next week Nick will be back to playing football and living his life without limitations. I am so grateful for that.

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I promised families in our facebook group a post on the brace and that is coming. I am not sure it is going to be the answer for all fibular hemimelia kids because some kids have ankle motion and likely wont need it. Yesterday though a question sparked an over 60 comment discussion and that is on my mind today. The poster asked if anyone had faced amputation as an option after having done many surgeries for reconstruction. These discussions always spur further questions and one thing I end up coming back to is that the skill of your surgeon or your child’s surgeon will determine the outcome of the reconstruction option more than anything else. With physical therapy and parent compliance following close behind and being absolutely vital as well.

When Nick was a newborn we took him to a doctor in NYC, Dr. Al Grant. He was familiar with and had treated fibular hemimelia. We were lucky to get an accurate diagnosis and layout of treatment options right away. Dr. Grant suggested we go to Baltimore to get a second opinion from Dr. Paley. Grant was on the fence regarding what would be best for Nick. He subscribed to the idea that 2 toes meant amputate and 3  meant reconstruct. Nick has 3 toes but it looks like 2 because two are together.

The RIAO blew us away from the start. We got to see Dr. Standard, who had arrived there a few months earlier and Dr. Paley. At the end of the consult we asked Dr. Paley if Dr. Grant could do what he could for Nicholas. His response “I can’t tell you what he can do I can only tell you what I can do”, was an honest one and it reminds me of my constantly suggesting families in our group take their kids to an expert, at least for a consult and for treatment if they can. That’s what I know.

I cant say what any other doc can do, though I have read things on the group and received priveate messages and emails from families that recount some unfortunate examples of doctors trying to do what they can’t. I can share with confidence what Dr. Standard has done for Nick and so many other kids that I have seen for myself. Nicks fibular hemimelia is on the severe end of the spectrum and I am sure that Dr. Standard’s skill set and experience are the reason Nick has had the wonderful outcomes he has had. When things have not gone according to plan Dr. Standard was able to handle it. He makes it look easy but I know that’s not always the case. He knows fibular hemimelia. The newest way he knows fibular hemimelia is collaborating to create this brace for Nick and other fh kids with stiff/fused ankles. Years of treatment has helped him see what these kids need long term.

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We didn’t plan on Nick needing a brace but I still consider this a wonderful outcome. The brace enables him to do what he wants and he still gets to wake up each day and stand on his own two feet. Lengthening and reconstruction is evolving just as prosthesis evolve for kids who have the amputation option. Nick’s brace is made with the same carbon fiber technology that some prosthesis are made of. I am so grateful technology seems to be moving fast enough to keep ahead of what my boy needs!

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2 thoughts on “New Brace, Old Questions”

  1. I’m interested to see how the new brace works out. This is something we will consider when Billy is done growing (he still needs the foot support/moulding while he is growing due to his clubfoot wanting to revert back with growth/muscle imbalances). He will need a leafspring brace then, which is what your brace looks like, and if the carbon fiber can give him more bounce with his fused ankle, that would be great 🙂

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