Thomas, born 2009When I was 30 weeks pregnant, we were told that our unborn son had Hypoplastic Left Heart Syndrome. Being very late into the pregnancy we went to the nearest children's hospital in NYC. The outcome was very dark for Thomas then. That hospital gave us a 10% chance that he'd live and told us to just consider compassionate care. We choose to fight for our son's life. We requested the cardiologist (our local one) to find us a new hospital that would at least give us hope. He directed us to Children's Hospital Boston. They accepted us and brought us in right away. They told us that the doctors in NYC were completely wrong and that there was no other complication on top of his HLHS. They took him from a 10% chance to a 75%.
Thomas had his first open heart surgery (the Norwood procedure) done at 5 days old. He came home after two weeks! Over the two months he started breathing a little odd, and turned a pale blue color. I brought him into the ER when he started breathing heavy and lips turned purple. They airlifted him and me back to Boston. He had his bi-directional Glenn done that week at the age of three and a half months, we went home a week later. After that surgery, he THRIVED. Our little boy became a 3 foot tall, 30 pound little monster. He is active and crazy and has a wonderful personality. But time went fast and at the age of two and a half (just 6 weeks after the birth of his baby brother) we were back in Boston. The third surgery was harder on us as parents. But it was quick in and out procedure (at least it felt that way) and he was out of ICU within three days and back on the cardiac floor. Sadly, the day before our discharge he developed a high fever and they detected a bacterial infection which prevented us from coming home. His fevers are come and go now, so we are still here. We have been here so far a month, and have at least two weeks left.
Story by Thomas’ mother, Alysha – New York
Cora - born 2009
Nathan, born 2010