Vu and I met with the Pediatric Cardiologist at MUSC on Friday. We had an echo cardiogram done on Vance's heart to determine what exactly was wrong with his heart. She told us he has an Unbalanced Atrioventricular Septal defect. Instead of the normal 4 chambers in his heart Vance has three, one of which is very small, so in affect he is working of of two good chambers. The most serious problem is the small chamber. The left ventricle that is underdeveloped is the most important chamber in the heart. This is the one that pumps oxygenated blood out to the body. If left the way it is his heart would not be strong enough to keep him alive. In order to correct this, Vance would need three open heart surgeries. One within the first week of life called the Norwood procedure. which shunts blood from his lungs to the artery going to the rest of his body. His heart will still be working very hard so at three-6 months he would have to have another surgery to drain blood directly from his upper body to his lungs and reliever some of the work from the little left ventricle. The third surgery at 1-3 years drains blood directly to the lungs from his lower body, so the function of his heart at that point would only be to pump blood out and his right ventricle would take over all the work. Each on of these surgeries is complicated but the entire series is even more complicated by his down syndrome. This is defect that only affects 4 out if every 10,000 births and is considered one of the worst of the worst heart defects. Out of the babies with defect less than 7% have DS. Typically in 'normal' babies the first surgery in the most risky, if they survive after 1 month nearly all survive the next two. This is not the case however with DS babies. The second surgery is just as risky as the first. Because of the risks and the developmental delays that Vance would face from the combination of but the DS and surgeries, Vu and I have decided not to do the surgeries, but to allow Vance to spend as much time with us and the family as he possibly has. Nature will take it's course and just as unexpectedly as he showed up in our lives, he will leave the same way. I've accepted that I can not control the outcome of this situation and have to have faith in God to know why this is happening to us the way it is. I'm sad for my boy, and will miss him dearly, but out of these very difficult choices, we feel that this is what will be best for Vance. It will be very hard to say good bye but we have him now and will have to enjoy the time we have left.
