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!