I have blogged many times on arthrogryposis as can be seen HERE. Our goal as upper extremity (hand) surgeons is to use therapy and surgery to improve function. The real purpose of our interventions is to allow independent function such as eating, writing, toileting, etc. There are a series of surgeries which we have found helpful in athrogryposis although each child is considered based on what he/ she is able to accomplish and what he/ she has trouble doing. For example, we believe the external rotation osteotomy of the humerus can be incredibly helpful to allow the use of both hands together- an incredibly important ability when the hands have limited function. But every child does certainly not need this surgery. Another example is providing the ability for the elbows to bend. This is perhaps the most important intervention we can provide for most kids as it allows the child to bring his/ her hand to the mouth. This can open a whole new world of independence!
But what happens when there is severely limited hand and upper extremity function? Severe limitations can challenge the idea that surgery can make a real, day to day difference in abilities. We can better position the arms and hands and fingers but if movement and strength in the hands and arms is so limited, these improvements may not help much, or even not at all. What then?
Well, the inborn abilities of kids to figure it out helps… a lot. Kids will figure out how to make the best use of the arms and hands. And we can still help with that process but, as always, in a way guided but what the child is able to accomplish.
And sometimes we have to get out of the child’s way. This is not always easy for us as physicians, for parents, or for teachers. Below is a great example of an amazing child who has found that his feet are FAR more functional that his hands. He eats with his feet (using forks and spoons) and performs many of life’s activities with his feet. School can be a challenge in these situations and we work with schools and teachers to make sure they empower the child to learn and interact in the best way possible. Socially, this is not easy for the parent or the teacher (at least initially, it is not a problem for the child). Over time, kids may become more self conscious about eating and writing with their feet and look for help in improving hand and upper extremity function. Again, every child is different and will be ‘helped’ in different ways.
A few video examples (mom gave permission for us to share):
My Bio at Washington University