Pierre Robin Syndrome

[AMEBAD@AOL.com]

I am a home care nurse who has been caring for twins with Pierre Robbin for 2 years. The problem I am looking for information on is sleep apnea. Cleft has been repaired and the doc's say that the tracheomalasia was 90% resolved as of one year ago, but one of the twins is still having apnea, snoring, positional. I am looking for information and support for mom, she does not have computer access. Any one who can help would be greatly appreciated. They were origionally told this was a mild case and would resolve in a year. Sleeping is the only time there is a problem.


Thank you for your help!

[Melanie - mother of Savan]

Hi! My 1 year old daughter, Savanna, was born with a soft cleft palate as a result of Pierre' Robin Syndrome. She, too, snores loudly. But to my knowledge she doesnt have apnea. I've never noticed her not breathing, even for a second. My suggestion to the twins' mother is to contact the nearest childrens hospital. They should have a team trained on PRS. At our hospital the best people are the speech pathologists. They know all there is to know about it. I am sure they can give her all the literature she needs. If not, contact Vanderbilt Hospital in Nashville, TN. I know they can help. God Bless!
Melanie