As soon as I got home the evening after our first high-risk ultrasound, I started looking up ectopia cordis. What was it, and why did it happen? Was there anything that we could do? I wasn’t about to just give up so easily on saving my baby.
I learned that this condition was basically just the heart growing outside the chest somehow. There are different ways that ectopia cordis can happen. The high-risk doctor that we saw seemed to indicate something about amniotic band syndrome, a phenomenon where the baby gets tangled up in sticky bands that form in the amniotic sac. These bands can prevent certain parts of the body from forming correctly, usually just a finger or foot. In our case, the band wrapped itself around our baby’s abdomen and chest.
“We have to at least look into it, Sweetie. We can’t just let her die.” I furrowed my eyebrows at Kenny. He nodded immediately. We would question and find more opinions from specialized doctors.
“I have to tell you that I’m not hopeful about your case.” The pediatric surgeon leaned back on the stool as we discussed what saving our little girl might entail. I bobbed my head. I was getting used to doctors saying that. The doctor threw out several other terms as he talked about the other problems that usually come with the heart’s displacement. I felt my vocabulary growing as he spoke. I was glad when he jotted down the terms on a scrap of paper.
“What can we do next?” Kenny asked. The doctor looked at him silently. “I mean, do we get some kind of ultrasound for her heart?”
“Sure, that would be the next step in knowing if anything can be done. Your chances are very low, though. Babies with this condition have only a 10% chance of life.”
We talked for a short time, and the surgeon showed us to the desk where we could set up an appointment with a pediatric cardiologist. I clung to the hope that maybe our baby would live. In a few short months, I wanted to hold her in my arms and sigh her name. Hadassah. My sweet baby.
by Sarah George