I was reading about a BBC show called Children’s Craniofacial Surgery featuring a boy with Moebius syndrome (which, unfortunately, we don’t get in the US – I just e-mailed BBC America to ask if it could be made available to the US streaming) and I really liked how they worded this:
“Harry is older, and has Moebius syndrome, giving him paralysis of the facial muscles. However cheerful he feels, he can’t smile. His parents left the choice of surgery up to him, and now he’s elected to have a major operation called ‘smile surgery’ to enable him to smile for the first time.”
I like that his parents embraced the idea of having surgery available, but up to him. It’s a hard thing to do, I presume, when the recommended age for surgery is so young… I’m sure many four-year-olds grasp the implications, but I’m afraid some do not. And coming from the point of view of someone who was very traumatized by surgeries as a young child, I am hesitant to say that this is the best course of action to take. It just seems wiser to wait until the child is mature enough to evaluate everything. I don’t know if this is the popular opinion in the Moebius community or not, but it is what it is. I’m definitely not by any means anti-surgery, I’m just in favor of waiting a bit and having the person with Moebius be able to evaluate for themselves the pros and risks of it (in most cases, of course there are exceptions to the rule).