Talking Specifics About My Boy's Heart

Many people have asked what specifically is wrong with our son. I’ve avoided the medical mumbo jumbo until now, but I’ll give a quick rundown for reference. You probably have to be related to us to really care about the specifics, but for those who are, here’s the scoop:

In addition to the hole in the heart, he has two known problems: a Double Outlet Right Ventricle and a Coarctation of the Aorta. Here are some links as to what that means:

http://my.clevelandclinic.org/childrens-hospital/health-info/diseases-conditions/heart/hic-double-outlet-right-ventricle.aspx

http://en.wikipedia.org/wiki/Coarctation_of_the_aorta

In layman’s terms, I believe (yeah, I am not sure even I fully understand) he has two arteries that are coming from the same place and performing the same function (DORV). And, he has a narrowing of the aorta (Coarctation). Both of these things, along with the hole, will require surgery. There may be some other narrowings, too. There is also the possibility of other chromosomal defects.

The good thing is everything is fixable. The bad thing is he will have heart/blood pressure/infection/virus issues all his life. Not only do we have to worry about him surviving the surgeries, but then we’ll worry all his life about something else happening to him. He’ll be monitored by a cardiologist all his life.

One percent of babies are born with heart defects. If I understand correctly, one to three percent of those babies have DORV. It is really rare. Six to eight percent of children born with heart defects have coarctation of the aorta.

Brooke and I are hoping they can fix everything with one surgery. That may be wishful thinking, but it is obviously the best thing. The coarctation surgery is likely needed on the day he is born. But he may not be big or strong enough at that point for the DORV surgery, so that may have to wait for a couple of months.  

We should learn more during our March 26 meeting with the team of doctors from Cincinnati Children's Hospital Medical Center.

We are learning what to expect. A friend of a friend’s baby went through heart surgery this week after birth and we have been following her blog to learn what to expect. The baby has a different problem, but it will be a similar circumstance. Check out the pictures of the scar and all the tubes and such. Heartbreaking.  

http://journeyofjackson.blogspot.com/

We’ve been buoyed by all the success stories people are sending us. And we have been getting support from around the globe. If prayers and good thoughts mean anything, our boy is going to be just fine.