I've been on a support group online for families affected by tetralogy of fallot. In checking the message board this morning, there was a post from a woman who's nephew was born with tetralogy. His name is Edgar, and I'm not sure how old he was, but he had not yet had any surgery to correct his defect. He had "extreme TOF with pulmonary atresia," which is very similar to what Nevaeh has. He had been doing fairly well, but today she posted that he has passed away. He wasn't able to have surgery in time. They live in Zambia, I believe. Please keep Edgar's family in your prayers through this rough time in their lives. I can't imagine what its like to loose a child. I know I have had nightmares about such a thing, and it saddens me to know that people have to go through such terrible times. Again please keep Edgar's family in your prayers!