I have two beautiful boys which I call my miracle babies. Both boys have a rare heart condition called compete AV heart block. Caden was diagnosed when I was 21 weeks pregnant and Ethan was at 22 weeks. So what is complete heart block? Well I'm not a doctor but I can give you the best explanation from a mothers view. Certain antibodies, that I have, cross the placenta and the first organ they attack is the heart. These antibodies attack the hearts electrical system causing the top and bottom chambers not to communicate. A normal heart has a built in pacemaker called the SA node which regulates the general rhythm of the heart. In complete heart block that pacemaker doesn't work so the top chamber beats at a regular rhythm while the bottom beats at a much slower rhythm. There is currently no cure for this. The only treatment is to implant a pacemaker. Caden doesn't have one but will have to have one at some point, but Ethan had a pacemaker put in when he was 9 months old. I'll get to those stories later.
Since the doctors knew of the conditions of my boys they had been watching this baby girl very closely. We started appointments at 15 weeks with a cardiologist trying to catch any sign of heart block before it appeared. The week after Thanksgiving we went in for our weekly appointment and the heart rate was in the 70's with a 2-1 heart block. They sent me to the hospital for a questionable treatment of an IVIG infusion, which is where they pump good antibodies into your body in hopes of reversing the heart block. There is not very much information out there about this treatment but it was worth a shot. Well, it didn't work and by morning this baby girl was in complete heart block with a heart rate of 60. Now to put this in perspective, if you've ever had a baby and you've gone in for a sonogram or just heard your babies heart on the Doppler their heart rate ranged from anywhere from 120-140. Now imagine if what you heard was half or less than half of that. It's a very scary thing. When the heart beats that slow it normally causes some distress on the actual heart muscle, causing the walls to be thicker and the heart to be slightly larger. It can also cause some regurgitation, which is when there is some back flow when the heart pumps the blood from one chamber to the next.
So here we are, I'm at 30 weeks with a third child with heart block. I've been told that I'm probably the only person to have 3 children with this condition. Too bad no one wants to do a study on me! This baby girl is currently doing the best she can. We now see the doctors every other week, instead of every week. She's growing and moving but with a slow heart rate. She is now also considered one of my miracle babies. I'm so thankful that God has blessed me with these children. He is really truly amazing how he let these babies survive and fight with such a slow heart rate. My kids will always be able to talk about how God really touched their heart.
Caden in the NICU after he was born.
Ethan at Children's Medical Center after he was born.
