Dear Julie, I am so pleased to find this site on the internet. My name is Darcie, I was born at .... Hospital, .... Connecticut in 1966, 2 months premature, and was the first born of twins. My twin brother was born healthy, just premature. (my parents had another daughter after we were born, with no BWS). I was recorded as the 11 case known with BWS at the time. The symptoms I was born with were the enlarged tongue, hypoglycemia, omphalocele, earlobe creases and a submucous cleft. My tongue I grew around, and had many years of speech therapy. I had yearly ultra-sounds for Wilms tumors. A palatal push back in my teens to help with my nasally speech (and possibly for other reasons I am not sure of) The hypoglycemia was controlled daily with zinc glucagon, which I eventually out grew through diet. (I think I was still an infant/toddler when this happened) The omphalocele was closed up 3 hours after birth. I had reconstructive surgery in my late teens to make sure the stomach walls were capable of pregnancy, as well as inserting a cosmetic "bellybutton". (two separate surgery's) I find the site interesting and informative. My husband and I had genetic counseling before having children. We returned to .... Hospital, where we spoke to several doctors, one of whom was there at the time of my birth, Margretta Seashore; Prof. &  Dir. Med. Studies Pediatrics. It was a great experience to be able to talk with specialists in genetics, particularly ones who were familiar with my case history. I am the mother of 2 children: Robert 8yrs & Mollie 6yrs. Neither of whom had any symptoms of BWS. I am blessed for the care I had at the time of my birth, and credit the Drs. and my parents willingness to keep me alive through what means they had at the time. I appreciate all what these parents are going through. I  have learned more about BWS, and hope that my story will be inspiration to other families who are not sure what the future might be for there precious babies. If you have any questions, Please contact me by e-mail.
Sincerely,
Darcie