Who else has a baby with PRS?

Question

My baby just had surgeries which included a trachiostomy and a feeding tube put in her. She has pierre robin sequence/syndrome. Hope i spelled that right. Anyway, she is doing fine now but I was curious if other out there are going through something similar. I found out after having her that I have stickler's syndrome, because my problems ar very mild compared to hers.

Answer 1

I have never heard of that, but I did find an online support group. My oldest had a tethered spinal cord, and I found having online support very helpful. Good luck!

http://www.pierrerobin.org/support.htm