Baby Evanders Heart Defects

Our biggest fear during this pregnancy was something being wrong with the health of our baby. After my second trimester ultrasound where we found out the gender of our baby (boy!) we received the phone call we never wanted to get. That something doesn’t look right with baby’s heart and that his stomach is on the opposite side of where it’s supposed to be. We were told we would need to go to Seattle Children’s hospital for another ultrasound and a fetal echocardiogram. On February 6th we received worse news than we could have ever expected. Our baby boy has a rare birth defect called Heterotaxy, which gave him multiple heart defects. Including Unbalanced Atrioventricular Canal Defect, holes in the upper and lower dividing walls of his heart. He has a single valve rather than two. Which is leaking moderately. The blood is not flowing properly in his heart. The veins from his lungs are coming back to the wrong place. His aorta is coming off the right ventricle instead of the left. He has little blood flow going to his lungs, which is pulmonary atresia, our biggest concern. His aortic arch is going to the right instead of left, and his right ventricle is smaller than normal. This complex of a heart defect is very rare. Heterotaxy means his abdominal organs are on the opposite side. When he is born he will need surgery right away. Another surgery when he is 3-6 months old and another one when he is a bit older. With him needing surgery right when he is born, we have to be in Seattle weeks before he is born and after for a period of time depending on how baby boy is doing. With being in Seattle I won’t be able to work and Jimmy will have to be away from work as well. We will also have our 2 year old son Isaiah with us in Seattle. We will have to pay living expenses in two cities for a period of time. We also have to travel to Seattle monthly, maybe more, from here on out. We are very grateful for the doctors and nurses care and support we are already receiving from Seattle Children’s hospital. We have a long road ahead of us but we are willing to do anything for our baby, including reaching out and asking for help, support, positive thoughts, and prayers for our sweet little boy. We are doing our best to stay positive and plan for what our future may hold. We appreciate anything and everything ❤️