BUT MY BABY NEVER SLEEPS !!!

     First comes the initial shock. After a perfectly normal pregnancy your baby is born with a small webbed hand and a mouth that forms a perfect little 'O' when it cries. The nurses quickly wisk him away and you hear faint voices off in the corner whispering "the hand, the hand",  as they weigh and warm your baby.

     They wrap him up securely and place him in your arms where he silently attempts to focus on you- and you know you are bound together by nature. A bit later the doctor comes in to the room and tells you that your baby is not normal but they do not have a name for the condition. His genetic tests are normal. His hand will be fine with some plastic surgery when he gets older.

     And then denial strikes. It's only cosmetic, it's no big deal. You take him home and are instructed to awaken him every two hours to feed him. You discover that it is a very tedious thing to do. He drinks perhaps a half ounce before he falls asleep from exhaustion. After a few weeks, you no longer have to awaken him to eat. He is constantly doing that himself and
calling to you with a hoarse little cry. Hour after hour you feed him the little bit he will take and hour after hour he awakens and cries for a bit more .

     The pediatrician reports that he his gaining weight slowly but surely and seems unconcerned about the fact that he doesn't sleep for more than quick naps- including all night long."Keep up the good work Mom and Dad". Meanwhile you notice something- he never blinks! He is three months old and he hasn't smiled yet. Suddenly the pediatrician has a name for this- Moebius syndrome. She tells you that it was a random occurance and that it will never happen again. She says that his face will never show facial expression but that he
will be fine, so go ahead, make some more babies in your spare time!!!!!

At one year old he isn't sitting alone, or crawling, or speaking. You get the appropriate medical care and the appropriate therapies and these things slowly change. But he still doesn't sleep and when he does he screams in the night and remembers nothing, even as he reaches ages 4,5,6,10!!!!

     Something happens over the years. You find that a support group DOES exist for moebius syndrome. This group is small in numbers but it's unity is undeniable. Suddenly you discover that LOTS of these children don't sleep well and when they do it is frequently interrupted by night terrors. Some of these kids have been taken to doctors and psychiatrists and you begin to see a pattern. And low and behold, they tell you that the sleep center of the
brain is located precariously near the cranial nerves that have not formed correctly.And it all starts to make sense.

     The doctors test medications slowly, one after another, each with minimal success. Benedryl, clonodine, klonopin, and the big guns- respirdal. None are perfect and there are side effects such as weight gain and irritability. Sound familiar?

     The next Moebius Newsletter will contain a survey about moebius and sleep. Please take the time to complete it and mail it to me. With some actual statistics behind us we can make the medical community take notice and help us fine a cure for this one symptom. And perhaps then we can sleep!!!!

Tara Trower