“Your baby has Hypoplastic Left Heart Syndrome. The left side of the heart did not develop. This condition does not have a cure.”
A Prenatal Diagnosis of Hypoplastic Left Heart Syndrome
I have always been a planner. Before making any decision, I evaluate the pros and cons and research the risks and associated probabilities. When my husband and I decided to get pregnant, I knew that, according to the CDC, 6% of women struggle with infertility. I knew it could take multiple months to conceive. When we got pregnant on the first try, I also knew that 1 in 4 pregnancies end in miscarriage. I carried around pads everywhere I went, just in case. By week 13 or 14, after all the tests and ultrasounds and blood work came back normal after we had heard a strong heartbeat a handful of times, I finally started to relax. By week 18, I started to feel what I thought might be little baby kicks and by week 20, I was able to identify that those little flutters were in fact kicks (especially after eating chocolate). At 20 weeks and 4 days, we went to our anatomy scan. We already knew that we were having a girl but were excited to see so much of our baby.
During the ultrasound, everything seemed normal (from my unprofessional perspective). We saw her spine and brain and little feet and face. We saw a beating heart, 140 bpm. The ultrasound tech kept having me move in different positions to get good pictures because my baby girl kept spinning and twirling inside of me. We joked that she was already calling the shots. After the tech was done taking pictures, she said the doctor was going to take a final look. Seemed normal. When the doctor walked in, he introduced himself and said “fluids look good but I see an issue with the heart. I believe it is severe.” He said we needed to see a fetal cardiologist to confirm what was going on. He said a bunch of other stuff too but I don’t remember what that was. I stopped listening after “I believe it is severe.” What does severe mean? Can they fix it? We had an appointment downstairs with the fetal cardiologist two hours later.
During the two hours between appointments, all I could think was that there has to be a fix. There are so many amazing medical advances these days. Of course there is a cure for this condition. These doctors can fix it. Of course they can fix it.
The appointment with the fetal cardiologist consisted of another 45-minute ultrasound, this time just focusing on the heart. In the beginning, I was trying to read the ultrasound tech’s face but I couldn’t tell if she was frowning because she was concentrating on getting good pictures or if she was frowning because there was something wrong. Next, the doctor came in to take another look. This time I tried not to read her face but she would occasionally smile or chuckle when my baby did a particularly big twirl or kick. Surely she wouldn’t smile if there was something wrong, right?
After the ultrasound, a nurse brought us into an office to wait for the doctor. I have watched enough medical shows on TV to know that this was the type of room, complete with a box of tissues at the ready, they bring patients to when the news is bad.
“They already set out the tissues,” I pointed out to my husband. “This is not good.”
“Your baby has Hypoplastic Left Heart Syndrome”
The first thing the doctor said when she sat down was, “This is not going to be an easy conversation. Your baby has Hypoplastic Left Heart Syndrome. The left side of the heart did not develop. This condition does not have a cure.” She went on to explain that Hypoplastic Left Heart Syndrome is when the left side of the heart and blood vessels do not fully develop. The heart has two chambers instead of four. The heart beats while it is still attached to the placenta which helps blood pump to the body but once the baby is born, the heart will no longer be able to pump blood. Given the diagnosis of hypoplastic left heart, the doctor explained our options, each one worse than the next.
- Three open-heart surgeries—the first in week 1, then a heart transplant. All of which are extremely risky, with side effects of their own, no guarantees of survival, and no chance of everything eventually working correctly
- Carry until full-term and “let nature take its course” over the following few days
The doctor assured us that they would provide support in every way possible, no matter what decision we made. We left the office. I think I was in shock. How could this happen? I took my prenatal vitamins, I washed my fruits and veggies, I gave up wine and sushi. We were halfway through the second trimester. Everyone said the first trimester was risky but there was no mention of the second trimester. I’d read about infertility. I’d read about miscarriage. I’d read about Trisomy 13 and 18 and Tay-Sachs and Cystic Fibrosis. I did not read about Congenital Heart Disease and Hypoplastic Left Heart Syndrome.
At 20 weeks and three days, the little baby kicks felt exciting. By the end of 20 weeks and 4 days, the little baby kicks felt like painful jabs to the heart.
Over the next week, after a bunch of research and tears, we decided to end the pregnancy. I feel like I knew that was the right choice as soon as we left the doctor but needed the week to let it all sink in. I could not bring this baby into the world just to experience pain, suffering, and life in a scary hospital. While she was inside of me she was happy and carefree and knew nothing of pain. The minute she came out, all she would have known was pain. We made the D&E appointment.
The Second-Trimester D&E
I thought the day of the procedure would be the worst day ever but I felt oddly at peace. The day we first heard the words “Hypoplastic Left Heart” was way worse. While I wished so bad that our baby had a full heart and the doctor had come into the ultrasound room at our 20-week appointment and said “everything looks good,” that’s not what happened. The best thing I could do for our baby in these shitty circumstances was to allow her to only know happy fetus kicks and twirls and peace.
Two days after the procedure, my milk came in and then slowly, over the next five or so days, it dried up. At first, this made me more upset. What a mean joke. My body thought I had a baby and produced milk but there was no baby. Once the milk started drying up, I was still upset. It was the last physical reminder of our baby girl. Once the milk was gone, she was also gone.
I am not sure the best way to describe how I feel. Maybe I will be better able to describe it as time goes on and I have more perspective but, I guess, for now, I just feel sad. Sad and grateful. Grateful to have access to amazing medical professionals, grateful for the wonderful support of my colleagues, friends, and family. And most of all, grateful for my beyond incredible husband who has been so perfect throughout this whole situation. I don’t know how I would have done this without him.
Lastly, I am grateful that I live in a state where I was able to make this decision for my baby, as terrible as it may be. I mentioned above that we “ended the pregnancy,” we choose “termination,” I schedule the “D&E procedure.” All of this is another way to say “abortion.” I had an abortion at 22 weeks pregnant. In many places, this option would not have been available. I am grateful for the pro-choice movement. The pro-choice movement allowed my baby to experience only peace. The pro-choice movement allowed her to never have to endure a short, painful, scary life full of medicine and hospitals. According to the CDC, second-trimester abortions make up 1% of all abortions. Families that get second-trimester abortions very much want their baby. Many of these babies have names and maybe even car seats and cribs and onesies. Families who get second-trimester abortions do so because that terrible option is just the least terrible. The family—and only the family—should make this decision. Despite what the politicians want you to think, everything is not black and white. Second-trimester abortions are the most terrible shade of grey. I am sad but so grateful to be able to make this choice.
I hope my story helps other families going through similar situations. Reading these types of stories provides me a lot of strength and comfort. I am looking forward to the storm soon subsiding and, hopefully, rainbows on the horizon.