Pierre Robins syndrome???

I was not sure where to put this question. but I was wondering if any of you have had a child with Pierre Robins syndrome. my niece was born on June 29th and right after birth she could not breath well and was then airlifted to a Seattle Children's and was diagnosed with this. it is very scary and what I have read online and even the information the hospital has given us seems to be all over, and I would rather here from someone's personal experience to get a better idea of what to be ready for. we already know she is looking at many surgeries ahead of us. but anything will help me. thank you