OUR NINE YEAR OLD SON
Our 9 year old son has a mild case of Moebius, affecting one side of his face more than the other. Although he does not suffer from all of the symptoms, it was very frustrating to have him diagnosed. For the first 2 years of his life, his very experienced and well known pediatrician thought it was just temporary facial paralysis which should go away shortly. After 2 years of hearing this, it was finally an eye specialist in Hamilton, Ontario by the name of Dr. Carolyn Hirsch that diagnosed him. She had never seen a case herself, simply had textbook knowledge of it. He does not have lateral movement of his eyes, and has what he calls a "crooked smile". Since the nerve and muscle damage is more prominent on his left side, he can smile slightly on the right side. He has a small mouth, but fortunately chewing and swallowing are not affected. He can also blink! What is amazing is the facial similarities among these children.
When he was 5 we took him to see Dr. Zuker. Since he has no
health problems as a result of this syndrome, the operation to "make a smile"
would simply be for cosmetic and social reasons. He suggested that the operation
not be done before the age of 8, as the child needs to be old enough to learn
how to "practice smiling".
Also, by this age, the child would have encountered more "teasing" and would
perhaps be more prone to have the operation.
My son is now 9 1/2 years old. He is a very smart, and very popular boy! I can only think of one occasion when he complained about someone teasing him, and I'm not even sure it was about his facial features. No one "bugs" him, and children who are curious ask in a very straight forward, non-threatening way why he has a "crooked smile". His response is usually that "his head was squished in his mom's tummy before he was born". Of course this is not the factual medical cause, but as a young child he would often hear me tell him this (and I did find during pregnancy that his head was "digging" into my ribs - he was also born breach 2 1/2 weeks early since my fluid was low and the fact he was footling breach.)
I did have great difficulty breast feeding, so I switched to the bottle, and after slightly enlarging the hole in the nipple he had little trouble feeding (a little messy though!).
He didn't walk until he was 17 months, but I never worried about this, and refused to allow others to get me worried about this, as it was not unnormal for babies to walk late (they're usually learning something else and become quite intelligent and mature as a result!)
I know his case is not severe, but I truly believe that what helped us and our son cope was refusing to believe that our son would be "handicapped" in any way as a result of this. We speak on the subject matter-of-factly, and calmly explain to family that this is who he is and to accept it, and get on with it. We have decided to leave it up to our son whether or not he gets the operation. Right now he has no desire. Not because he doesn't get teased, but because "it would hurt!" He recently had a bilateral set back procedure done on his ears ("pinned back") and since this was an operation that "hurt" afterwards, he'd rather not have another!
He is a great student and a wonderful athlete, playing both rep hockey and soccer. Rest assured that the lack of eye movement does not impair him on the ice rink or soccer field! He is very sensitive and mature, and has many, many friends. From the time he started grade 1 he has also managed to make a great many friends in the senior grades.
My advice is to treat them like they're normal, and explain that no one is perfect. Everyone has something that's "not right", be it inside or out. Find things they are good at and encourage team sports and activities so they learn to be accepted in many groups. Encourage friendships and "get-togethers".
If you don't make an issue of it, neither will others. Let them just see the wonderful person that your child is!!