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.

Entire article here.

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