My daughter is 6. At 16 weeks we knew she had an omphalocele, they did the tests for BW, but they came back negative. She was born at 35 weeks by C-section. The intestines were put back 4 hours after birth without complications. She had hypoglycemia at birth, but it was controlled. She was born with macroglossia, nevus flammus, ear pits, ASD & VSD. The doctors "forgot" to tell me about this. We had a conference with the doctors just before we were discharged, and towards the end one of the doctors whispered something to the head of the PICU, and they started arguing in whispers. I noticed and demanded to know what they were arguing about... they didn't want to tell me... but I insisted... so they said she had ASD & VSD but it was nothing to worry about as it really wasn't important or anything serious to worry about... Well we ended up being hospitalized for months on end due to this ''minor" condition that caused my daughter to suffer from congenital heart failure. I wanted the doctors to perform open heart surgery for her so she would have a chance to survive, but they refused to 'cos they thought she wasn't going to survive so it would be a waste of time. But I insisted, and as I am from England, they said they would consider doing it if I went for a consultation with Dr. Jane Summerhill. To cut a long story short, we did the open heart surgery at 11 months. 

Best Wishes,
Maizie.

August, 2000