Beyond Face Value
by Vicki McCarrell
The pediatric neurologist comes to see you in your hospital room after the birth of your baby . You know something is wrong -- your baby doesn't suck -- he's losing weight -- he can't breast feed -- he takes two hours to get two ounces of milk from a bottle. But you're not prepared for this. The neurologist says it is Moebius Syndrome. Your baby will never smile, never have facial expression, never blink his eyes, never move his eyes laterally. Your baby is sentenced to a life with no SMILE. Imagine the shock. You've heard of lots of birth defects, you pray during your pregnancy your baby won't be one of the statistics, but here he is -- with a syndrome so rare no one you talk to ever heard of it -- or ever met anyone else with it.
You spend the first few months of the baby's life trying to keep him alive. If you're one of the lucky ones, you can make the bottle hole big and hold his lips together with your hands to force milk down him, hoping he doesn't choke. If you're not one of the lucky ones, you feed your baby via a gastric tube through the nose, or worse yet a G tube. It takes months for him to get enough muscle strength to hold his head up alone. Even more months for him to turn over and eventually begin to go the "army crawl." More months or years, for him to walk.
Through all you wonder how many other parents and children are going through this. You sneek peaks at your baby all day long, hoping to catch his first smile. It never comes. Slowly, you realize it never will. You wonder how other children, other adults, will treat him. You begin a search for other families affected by this rare occurrence. When you finally find the wonderful organizations like About Face, Faces, Forward Face, Let's Face It, NORD, and publications like the Forward Face Newsletter, you realize you're not alone . . . your baby is not alone. You revel in the ability to communicate with other parents whose children cannot stand the sun because they can not blink, nor squint to keep the light out of their eyes. You discover that most Moebius children have swallowing problems, malformed tongues and weak muscle tone. You also realize that some Moebius children have it much worse.
Some Moebius children have missing limbs, fingers, toes, or webbed fingers and/or toes. Some Moebius children have club feed, or small limbs. Some Moebius children don't walk until they are 4-5 years old, if at all. Some Moebius children have respiratory problems or hearing problems.
All Moebius children have one thing in common, they do not have the 6th and 7th cranial nerves. The nerves to the face which control facial expression and allow one to blink and move the eyes laterally.
The ability for a smile sets man apart from other animals. People with Moebius Syndrome do not have this ability. They have the same feelings, emotions, needs, wants and desires that we all have, but they do not show it via facial expression.
As the mother of a 2 1/2 year old boy with Moebius Syndrome, I have learned to read his emotions without the benefit of his facial expression. I know when he is happy, because he opens his mouth and laughs out loud. I know when he is sad because he cries and I know when he is mad, because he throws things or yells just like any other 2 year old. Despite what many of us are told, these children are bright, intelligent fully functioning human beings who happen not to have the ability to communicate via facial expression. They usually need speech therapy to help them approximate sounds made with the lips, such as B,P,F,V,M, and W. They work very hard to overcome the weak muscle tone they are born with. And, from the day they learn to walk, they run.
It has been a little over a year since I began the search to find other families with Moebius children -- or adults. I found 80 others throughout the US and Canada. More mothers call or write every week. Along with Lori Thomas, we publish a newsletter, "Moebius Syndrome News," four times a year. Lori has a 4year old daughter with Moebius Syndrome. Actually, there are seven children and one adult here in the Los Angeles area with Moebius Syndrome.
Networking with others affected by Moebius Syndrome is vitally important to those who have children with Moebius Syndrome and adults with the syndrome. The ability to share information, ask questions, and get suggestions on how to deal with crossed eyes, choking, drooling and cruel comments from unknowing strangers are imperative to a parent trying to cope with Moebius Syndrome.
The most important gift we can give our children is that of love, self confidence and a strong self image. We can't shelter them from cruel remarks from unknowing strangers and we can't live their lives for them. We can, however, let them know that they are beautiful even though they can - not smile. We can tell them daily how important they are, how wonderful they are, and that they have an important mission in life -- to educate others about the need to look "beyond face value."
Written in 1992