PIERRE ROBIN SYNDROME

[Anonymous]

[gabriele]

A really good friend just had a baby with pierre robin syndrome and she isn´t talking to anybody so far. It would be great if somebody can tell me exactely what this means (as far as I know the baby has no cleft). The baby has a lot of problems with drinking and breathing. Lukas can´t sleep on his back because the tongue falls back. Please give me hints and email adresses whom she can contact and please tell me if this means nomally also other problems (brain etc.). I´m keen on any infos or other URLs on this topic which helps me to get in contact with her! Please answer to me urgently.
Thanks
Gabi

[Nancy]

Hi Gabi:


I have an 11 year old son with PRS. I have also founded a group called Pierre Robin Network. We are a group of parents of children with PRS. You can check out our web page at <a href="http://www.pierrerobin.org">http://www.pierrerobin.org</a>. We have lots of families dealing with PRS at a variety of stages and ages. I would love to put one of them in touch with you or your friend. Just let me know. nancy@pierrerobin.org