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Living with BWS in an infant

lotte Message
10 Mar 2011, 11:15 AM

Hi I have a three month old daughter who has been diagnosed with BWS. he was born with exomphalus which was repaired on Day 1 and also has ear pits on one side and has an enlarged tongue. Our lives are slowly getting back to normal and Charltte is having less and less problems everyday. She still is prone to choking a far hit but that had just become part of our everyday living. The surgeon ensures us she should have no trouble with her bowel s the sac around it protected it in utero. However we have had a bout f gastro this week and her belly was huge, she couldn't even fit in her 2 year old brothers bath seat so back to the doctors we go. The doctors appointments are slowly becoming further apart and now we are seeing respiratory physician, pediatric surgeon, pediatrician, geneticists and the gp. And yes I'm over it.but it must be done. I am really interested in talking to some othe families that also have children with BWS.