I walk in the room. The young woman on the exam table gives me a brief smile. The crisp, white sheet draped over the round of her belly flutters as I shut the door. I put down her chart and introduce myself. Ms. M is halfway through her pregnancy. Her anatomy scan two days ago was incomplete. The fetal heart wasn’t seen well. So she’d been referred to me, the pediatric cardiologist.
I ask Ms. M some questions about her health. The fleeting smile returns as she answers. Her fingers tighten. I slide into my seat and take hold of the ultrasound probe. I want to reassure her. I can’t until I’ve checked her fetus.
At a large referral center, roughly a quarter to a third of fetal echocardiograms, ultrasounds of the fetal heart, will be abnormal. When I come across a fetus with a heart that has developed improperly, where parts are absent or in the wrong place—think of a toddler’s sketch of a person with only one eye and an arm coming out of the head—I put down the probe, flick on the lights and turn to face the parents.
I take them into a room with a table and comfortable chairs so I can draw, with colored markers, the heart of their fetus. I explain what can be done. Their baby’s heart is sick. Their baby needs a surgery as soon as she’s born. Without it, she will die. Even with surgery, there is a chance their baby might not make it. But we will do everything to fight for her if that is what they choose.
I hold their hands, pass tissues and wait for the question that every family, regardless of background, asks next: Is my child going to be normal? They want to know if their child will go to regular school, ride a bike, grow up and have a family. Every time my answer is the same: We don’t know.
Advances in medical care allow most babies with severe heart defects a chance at survival. Yet more than half of these children will suffer neurodevelopmental setbacks. The spectrum ranges from minor learning disabilities and attention-deficit disorder to autism and severe intellectual handicaps. We often don’t know why this happens. We don’t know who will be affected. The only option is to watch the baby closely over the first few years of life and intervene as delays are detected. It is an entirely unsatisfactory situation. Which is why, in addition to being a clinician, I am also a researcher.
My probe sweeps from one side of Ms. M’s abdomen to the other. I see that her fetus is tucked in a ball, arms and legs in front of the chest, hiding the heart. I ask Ms. M to turn onto her side. This does not help. I explain the situation and ask if she’d like to go for a drink of water.
Toward the end of my cardiology training, I went back to school for a degree in biostatistics. I sought out mentors. I wrote grants. I ran a study investigating early predictors of neurodevelopmental outcomes in children born with congenital heart disease. I wanted more information so I could tell parents something other than, We have to wait and see.
Then I read a novel. I was on bed rest, pregnant with my third child. I loved fiction, but hadn’t found time since Amherst to read beyond medical journals and statistics textbooks. Perhaps pregnancy hormones and my anxiety over a threatened preterm birth were partly to blame, but that novel opened a door to a room in my brain that had been forgotten. I felt awakened—and I wanted to write something that would make another person feel that way.
During the remainder of my pregnancy, I wrote a novel. Over the next few years, I crunched data from my research, scanned pregnant bellies and edited my manuscript in odd, stolen moments. I attended writers’ conferences. I wrote and rewrote. I queried agents and editors—more than a hundred of them. Most never responded.
I was no stranger to rejection. I had written medical articles and grants and knew acceptance on first submission was rare. Perseverance was necessary. It was a lesson from my grandparents who fled Cuba and had to start over, from my mother who applied three times to medical school and disregarded the letters that suggested she try nursing.
I realized I needed to tell a different story—one reflective of my experience being raised by mis abuelos while my parents worked, and of being a physician caring for Spanish-speaking families in Washington Heights. I put aside my first manuscript and wrote about a young Dominican-American woman pregnant with a baby with hypoplastic left heart syndrome, in which the left side of the heart is missing. Within the year, I sold this novel.
My main character is based on many patients I’ve treated: young women, some still in high school, each pregnant with one of the 40,000 babies born every year in the U.S. with heart defects—a number equivalent to roughly 1 in 100 births. Like my patients, this character has questions. Like her doctor, I don’t have all the answers—but my research continues.