Atrioventricular septal defect, or AVSD, is the most common congenital heart defect in children born with Down Syndrome. It is hard enough wrapping your head, and heart, around the fact that your child has been born with a chromosomal abnormality. But it can be a punch in the gut to think about the fact that your new little baby has a heart condition that will require open heart surgery.
AVSD is also known as complete AV defect. It is where the septal wall between the atrium and the ventrical sides of the heart both have holes in them. This causes the un-oxygenated and oxygenated blood to mix sending the blood back to the lungs more often for more oxygen. This puts a lot of stress on the heart and lungs causing congestive heart failure to begin around one month. The other problem is that rather than having two separate valves, the mitral and tricuspid values, there is just one large valve. Both of these problems will have to be fixed, without the fix our baby will not live.
When we got the diagnosis I had so many questions but the biggest question I had was, "Will my baby die?" I think that would be a question that any parent would ask if they found out there was a problem with their baby's heart. The great thing about this being a common heart defect is that the surgery is performed often and it has a 97% success rate that the surgery will correct the problem. For MOST children it is one surgery and then they are capable of having a life like any other child. His heart will never REALLY function the way a healthy heart will and he will have to see a cardiologist every year for the rest of his life, but he will be able to play sports if he wants to play.
We have no idea when the surgery will take place but we do know it typically happens by the time the baby is 6 months old. So right now our job is to keep him healthy and do everything we can to get him to gain some weight. Of course I am praying that God will heal his heart, that we will go to his cardiology appointment and the doctor will tell us that a miracle has occurred and his heart will not require surgery. And call me crazy but I truly believe that God can do it, He could heal him and use the miraculous healing to show people His power. But, I am also very aware that God may choose not to heal him. But I do know one thing, God WILL use John Isaac, and the rest of our family, to show the world His goodness, faithfulness, and love. God is good even when a child is born with an extra chromosome or a heart defect. God is faithful even when He doesn't choose to show His power by a miraculous healing. And God is loving even when He doesn't answer our prayers the way we want him to.
As I sat in the NICU watching my sweet baby boy lying in an incubator I was praying and asking God to please tell me if our baby would be ok. I read something that had a scripture with it. The scripture was Psalm 118:17 and it says, "I will not die but live, and will proclaim what the LORD has done." I was so encouraged and truly believe that this little boy will live to proclaim the word of the Lord to the nations. And I can't wait to see what God is going to do through this little boy and the rest of our family.
