Update from Boston Children’s Hospital

About a week ago, I contacted Boston Children’s Hospital for a second opinion. They are the world leader in hypoplastic left heart syndrome (HLHS), and do many things that other places don’t, such as fetal surgery. 

Monday, they finally received all of our medical records. A doctor, Dr. Friedman, reviewed the results and actually had better news.

By the way, this is a long post. If you don’t feel like reading it all, skip down to “In Summary,” near the end. 

Boston does not believe that the diagnosis of HLHS applies. Yes, they see that the left side is smaller, but Dr. Friedman thinks that it will very likely be big enough to pump blood to the body. He does not think that the series of 3 surgeries will be needed.

They also did not see any aortic stenosis. That means that no fetal intervention is recommended. So, I will not be going to Boston for fetal surgery.

The diagnosis that Boston believes is most accurate is Coarctation of the Aorta (COA), or a narrowing of the aorta. This is, in general, less serious than HLHS. It will still require repair, but is much simpler than the series of 3 surgeries for HLHS. Plus, COA repair has a much higher survival rate than the HLHS 3 surgeries.

Boston believes that our local Children’s Hospital should be able to handle this. Here is the information page about COA from Children’s Minnesota. Boston wants us to mention this diagnosis to our local care team and see what they have to say. Boston reconfirmed that I need to deliver our daughter where we are planning on having her surgery. Right now, they see no reason why we should have to go to Boston. However, they would like us to call them back after our next follow-up fetal echo cardiogram on January 17th.

In Summary:

In short, we received good news this week. Boston believes it likely that our daughter will have two pumping chambers. Instead of the diagnosis of HLHS, they think coarctation of the aorta (COA), or narrowing of the aorta, is more applicable. No fetal intervention or surgery is recommended at this time. In fact, they do not see the need for us to go to Boston at all. However, we are still planning on a heart repair once she is born, with extended NICU time.

We both feel some relief, and slept better last night. Our daughter is not out of the woods. We still have a long, hard journey ahead of us. But at least there is a bit more hope. We still welcome thoughts and prayers.