Today, Chris and I met with a general surgeon from CHKD to discuss Gavin's gastrointestinal problems. Gavin has duodenal atresia, which basically means he has a gap in his stomach that prevents food from getting to his intestines and being absorbed by his body. Within a few days of being born, under ideal conditions, he would be taken into surgery to have sections of his stomach sewn together. Until this procedure is completed, he is unable to eat so all nutrition will be provided to him through a central line. It usually takes an additional 3-4 weeks before he is able to eat on his own, but this timeline is expected to be longer for Gavin as children with Down Syndrome seem to recover more slowly from this surgery.
The fact that Gavin also has Tetrology of Fallot complicates the procedure, because the doctors can't operate on his stomach until his heart is stable. While the stomach issue needs to be dealt with in a matter of days because it prevents him from eating, that timeline will be pushed back until his heart is stabilized.
The surgeon said that the combination of these two conditions and these two surgeries are very high risk in a newborn, and that out of high risk situations such as these in the operating room, that Caucasian males have the lowest survival rate. We meet with the cardiologist next week, and he should be able to give us a more comprehensive picture of expectations at that time.
But as of today, our reality is that Gavin will be a medical miracle to survive these surgeries.