Pierre-Robin Syndrome

[jeske4@triton.net]

We recently had a daughter born on July 2, 1999 with
Pierre-Robin Syndrome. Feeding and breathing seem to be our
biggest problem.

[sbailey3@uswest.net]

Our daughter was born in December of 89 with Pierre
Robin Syndrome. She is now 9 and in 4th grade. She
had her cleft palate surgery at 14 months old and it
was a one time operation. She is still in speech
therapy and will have to have braces in a couple years.
When she was about 5-6 weeks old, we went to gavage
feeding and didn't stop until she was 10 months old.
Her breathing difficulties seemed to get better after
we taught her to stick out her tongue. (better control)
If you would like more info or just want to talk, please
contact me.


Debbi