Baby Heart News: Tricuspid Atresia

Since the first week of December we have known that little boy to-be, Eli Matthew, has some problems with his heart. We now have real answers. Yesterday we drove down to Salt Lake City and met with the Pediatric Cardiologist at Primary Children’s Hospital. He diagnosed Eli with: Tricuspid Atresia. (We had thought that it was Tetralogy of Fallot—this is similar, but Tricuspid Atresia is a bit more complicated.)

The right side of the heart has some major defects. In a normal heart the right atrium and the right ventricle are connected through the tricuspid valve. In Eli’s case his tricuspid valve did not develop, instead there is a wall of muscle between the atrium and ventricle. There is also a connection between the left and right side of the heart (there is an opening between the right ventricle and left ventricle). In typical cases the pulmonary valve is underdeveloped; however Eli’s pulmonary valve is just fine, allowing unrestricted blood flow to the lungs. What ALL this means is that the blood is unable to get the proper amount of oxygen. Eli is considered a “blue baby” because his oxygen saturation is low.

We will be delivering at the University of Utah Hospital. It will be a scheduled delivery, probably 1 week before the due date—April 21^st. Surgery is needed, but because Eli’s pulmonary valve has developed correctly he does not need surgery until 2 weeks of age. We will be able to take him home after he is delivered, then come back to Primary Children’s Hospital for his first surgery. The connection between the right and left ventricle is essential so that blood can get to the lungs, however there is too much blood going to the lungs and causes a lot of pressure and stress on the heart. They will place a band around the main pulmonary artery to relieve the pressure.

This surgery will be the first of 3 surgeries. The second will be done at 6 months of age, and then the third will be done around age 2. Each surgery will be open heart. However for the first surgery the heart will not be stopped. The others will need to stop the heart, putting Eli on by-pass during the procedures.

We are anticipating that this first surgery will take up to 6 hours. Eli will then stay at Primary Children’s Hospital up to 2 to 4 weeks for recovery.

After all his surgeries, Eli should be able to live a happy and fulfilled life. T-ball is definitely in his future.

I wanted to share this so that everybody can be on the same page—and hear it “straight from the horse’s mouth.” Matt and I are doing fine, just taking it one day at a time. Not sure how this is going to work out with his schooling, but so far his teachers are working great with him. Our next appointment is March 11^th, again at Primary Children’s Hospital. When there is more information we will let you know. Thanks for your support!