Last night the RIAO docs held a web chat specifically on the PRECICE device they developed for internal lengthening. The original physician development team consisted of Dr. Standard, Dr. Herzenberg and Dr. Green. For some more information about the device visit here.
I have written about it before and it is a huge break through. I am so grateful our children have doctors who are also dreamers. You’d have to be a dreamer to come up with such things! Nicholas is very lucky his last two lengthening surgeries will be with the PRECICE. Here is some info from last night’s chat to help determine wether/when it will be an option for your child.
External fixators will still remain a reality for fibular hemimelia treatment. This sounds like bad news to new parents wanting their child to benefit from the latest technology, however the external fixator felt like a miracle to us when we saw what it did for Nick’s leg (it was much scarier before it was on Nick’s leg compared to after). Nick had three lengthening surgeries using Taylor Spacial Frames and I remain grateful for that technology!!! While not easy, it is very doable.
Wether internal or external, these devices enable our children to maximize the function of the limbs they were born with. They bring my son closer to the dream I have had for him his whole life, to hop out of bed at maturity with two feet hitting the floor… To feel the sand between all of his toes… I know that he would be ok without these things but I am so grateful, that so far, he does not have to be.