But there is something very wrong with your baby’s heart.
When we found out Lauren was missing her corpus callosum, I was beside myself. I didn’t even care that they thought there was also something wrong with her heart, too. Because hearts can be fixed. Brains can’t. I remember wishing that they were wrong, that she only had a heart defect. Please, don’t let there be something wrong with her brain. Her BRAIN for God’s sake.
How ironic, that on this day, my baby’s brain was perfect. But his heart. His heart was not. And I was about to find out just how ignorant I was about hearts being able to be fixed.
We found out at 17 weeks and 4 days that there was something very wrong with his heart. It was 4:30pm. They had set up an appointment for us the very next day at 8:00am for a fetal echocardiogram and a meeting with the perinatal cardiologist. The perinatologist walked us through what she saw that day, with the caveat that she was not a cardiologist and could not give us anything more than her observations. The left side of his heart was really big. Bigger than the right. And it wasn’t pumping. Something was keeping it from pumping, and she didn’t want to guess what exactly it was.
I went home and googled like crazy. The one thing I tell my patients not to do.
Cardiomyopathy. Dilated cardiomyopathy. Hypertrophic cardiomyopathy. Hypoplastic left heart syndrome. Coarctation of the aorta. At this point, I was guessing. And reading about my guesses weren’t helping me at all.
The next day, we went for the echo. It took about two hours. I was friendly with the sonographer because she had completed all four of my fetal echos with my daughter. “Baba” was her name. There was a medical student there that day, observing. A good chance for her to see a really sick heart, I thought. We talked about all the crazy heart anomalies Baba had seen in her years of doing this. I have really developed a love for cardiac and cardiology in my years of nursing. In fact, I am board certified in cardiac-vascular nursing. It’s fascinating and I love it. So all of her stories not only interested me, but they passed the time. We talked about how with Lauren, they “thought” she had coarctation of the aorta, but they weren’t sure. About how when she was born, they discovered that they were wrong. In the next breath, Baba told me she was sure that the doctor would be able to tell us exactly what was going on with baby boys heart.
So we sat in the consultation room for what seemed like forever. Again. I don’t even remember what we talked about, but Barry was getting ready to leave in a few weeks for the next Coast Guard patrol, so I imagine that we were recapping the to-do list of things that needed to be accomplished before he left. I don’t think either of us thought that planning for all of the scenarios where our baby was going to die would be part of that list.
The cardiologist came into the room and immediately grabbed a box of tissues. One for me. And one for herself. Yikes.
“So what have you been told so far?”
I explained that the perinatologist had told us there was something “very wrong” with the baby’s heart. I knew enough to know that the fact his left ventricle wasn’t pumping was a really bad sign. But, I was only 17 weeks. It’s early, right? Maybe there was time for it to be fixed.
I remember her looking down, having a difficult time making eye contact with us, and apologizing, saying “I’m sorry. This is still so hard for me to do”, and began to explain what was wrong with our baby boys heart.
He had something called aortic stenosis. The valve between the left ventricle and the aorta was hardened, or stenosed. Because of this, the left ventricle had been working extra hard trying to overcome that pressure. It had dilated, or grown, and the muscle tissue had hardened and become scarred. Shit. Not only that, but because this had happened so early, his aorta (the main blood vessel that feeds the body) was really really small. Double shit. She explained there were different degrees of the aortic stenosis. There was mild, moderate, severe. And even worse than severe, there was critical. We were 17 weeks and 5 days. Baby boy’s aortic stenosis was critical. Shit shit shit.
She explained that there were a few surgeons that intervened while baby was still in the womb. A surgeon in Boston performed a fetal balloon valvuloplasty, where the mother was put under general anesthesia and the baby’s heart is actually operated on. She explained that when they first began to do the surgery, they took far too many candidates and since then have really gotten particular about the kinds of patients they take. Because it’s so risky to the baby, they need to have a somewhat high degree of confidence that the procedure would change the course of the baby’s condition. The potential benefit had to outweigh the risk of losing the baby as a result of the procedure. She was almost certain we would not be candidates, but she was willing to confer with the surgeon in Boston anyways.
I knew that it was bad. But I didn’t know it was this bad. Very very poor prognosis. Life limiting. Incompatible with life. High probability of death before birth.
Lightening had struck twice. And all that bad stuff that never happens to us, was happening. It was happening and there wasn’t a thing we could do about it.