Congenital heart defects are the most common birth defect, comprising about 1 in every 100 births in the United States. Our little guy has been diagnosed with a congenital heart defect known as Pulmonary Atresia. The pulmonary valve is closed, blocking outflow of blood from the heart to the lungs. This also causes the right ventricle to become smaller, stiffer, and leak blood the opposite way.
At our 20 week ultrasound, the ultrasound tech told us she didn't quite see everything she wanted to with the heart. She referred us to a specialist at Davis Hospital who informed us that our baby had a heart defect and then referred us to Primary Children's Hospital. We've been going to Primary's for the last few months to get fetal echos to monitor his heart. Here is the plan from Primary's: I am going to deliver at the University of Utah hospital (I'll be induced there on January 15) and right after delivery, the baby will be taken to Primary's. They will put him on medication to keep the ductus arteriosus open (which typically closes shortly after birth). After a few days he will receive surgery where a catheter is inserted into an artery in his leg and brought up to his heart. A balloon will then open up the pulmonary valve. Even though there will now be an opening in the pulmonary valve the right ventricle hasn't been able to pump for 9 months so his heart will require a few more surgeries. Within the next week he will have open heart surgery called a BT Shunt which is another valve in his heart. At that point it's up to him to see how he does. He will most likely need another open heart surgery (the Glenn procedure) at 6 months old. This procedure makes his heart into a 1 1/2 ventricle heart where the right side is only having to do half the work. Depending on how he's doing, he'll possibly need another surgery at 3 years (the Fontan surgery) which makes his heart into a 1 ventricle heart and the right side is completely bypassed.
We've had quite the last few months.
Russ and I continuously count our blessings. We are so grateful for an ultrasound tech who caught this early, for the amazing medical care we have received and will receive at Primary Children's hospital, for the education and preparation they have provided us with, for all of you and for your concerns and prayers, and mostly, we are so grateful for our little guy and are so excited to meet him in a couple weeks!
3 years ago