|When I had just given birth to my third
child, having nursed my first two successfully, I sensed that something
was very wrong. My little baby girl was unable to close her mouth to suck.
I spoke to the pediatrician who told me that there was nothing wrong with
her and that I was upsetting the other mothers in the nursery. He prescribed
sedatives...FOR ME! Now I don't have a medical background, but I do have
common sense, and I could see that Robyn wasn't the same as my other children--that
something was terribly wrong.
When she was about three days old, she was still losing weight, so they put a naso-gastric tube in, again telling me that nothing was wrong and that I needed to calm down...to continue the sedatives. I wanted answers, and though I guess that was asking for an awful lot, I was in a state of panic.
When Robyn was seven days old, I took her home. They told me to let her sleep for twenty minutes and then to try to feed her for another twenty. By that time, I had given up on breast feeding. In fact, I had just about given up on everything! It wasn't until she was four years old that the physicians told me she had a cleft palate. They apologized for not noticing sooner. If only they had listened!
On the way to Robyn's three week checkup, I crashed the car. You can imagine the state I was in! She was in a carry tot and the accident, though it didn't really hurt either of us, scared her enough to produce hysterical cries.
That did the trick, because the doctor noticed that her face wasn't appropriately responding to the crying. He diagnosed Moebius syndrome on the basis of what he saw as facial paralysis. He congratulated himself on the diagnosis. And I felt relieved that my fears were not "all in my head" after all.
Medical people have GOT to listen to the
people they care for. Thanks for taking the time to read what was for me
a true horror story. Here's a picture of Robyn today...a real blessing
in our lives! Teresa Kirk
Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468
Last updated: November 14, 2004