Bad News

We went to the perinatal specialist today. He specializes in general high risk pregnancies. His ultrasound tech did a great job with the US and got us some great profile shots and spent a lot of time explaining everything she was doing and looking at. It was pretty obvious though that she saw something wrong with the heart, since she got pretty quiet and spent about 15 minutes taking photos from every angle. She left and got the MD who did his own US look at the heart. Without telling us anything he said I'm going to review what we have seen and I'll be back to tell you what I have found.

After a good long wait he finally came back and told us it didn't look too good. The baby has Hypoplastic Right Heart Syndrome. It is really rare and can be really bad. He gave us a lot of anatomy review, but the basic thing to understand is that that right side of the heart is super small and that it's size is not compatible with life after birth unless there are open heart surgeries done.

What we are looking at is a planned birth at a pediatric hospital in Atlanta, where specialists there will likely perform the first of three open heart surgeries around 3 months of age. Two other heart surgeries will follow before he is 3-5 years old. The surgeries are meant to make the left side of the heart function as both the left and right side. Because of this, there is no guarantee of long term survival, since this will essentially double stress the left side. Every surgery has its own mortality rate, with the highest mortality being the first surgery.

Having said all of those bad things, there is some hope. Apparently the majority of babies born with this defect have NO right side to their heart. In our case, there is a right ventricle (although it is small) and it does appear to be functioning (although not at full capacity). If this turns out to be the case, then the surgeries wont be as severe, and will have much better outcomes for long term prognosis, since the left side of the heart wont need to be as stressed.

To give the doctors the best chance of diagnosing and fixing the defect, the MD suggested an amniocentesis to be sure no other conditions exist. We did the amnio (which hurt like hell) and now we are waiting for the results (two weeks). After we get the results we will begin consultation with a fetal cardiac specialist (probably in about 4 weeks). Until then, we will just proceed like anyone else would...plan a nursery, pray a lot, and prepare to spoil the crap out of this kid.

Please keep us in your prayers as we begin this long road. We are fine, shaken but fine. Whether it all ends tomorrow or 20 years from now, we will love him unconditionally (and it is a he...we had her double check!).

~Kathy