When Your Child is Born with Congenital Heart Defects
Keely O'Brien was just 2 weeks old when a cardiologist told her parents she wouldn't survive without surgery
Still, an ultrasound can miss tiny heart defects like Keely’s, Jonas says. Sound waves have to pass through the abdominal wall, the wall of the uterus, amniotic fluid, the baby’s chest wall and the heart itself. “For some families, finding out that their baby is going to have a serious heart problem requiring surgery often adds so much stress to the pregnancy,” Jonas says, noting that parents may be better off not knowing until the baby is born.
Most congenital heart defects are genetic, but not necessarily hereditary, and are caused by a complex mix of errant chromosomes and other factors. If a mother happens to have a fever and the fetus has just the right mix of genes, Jonas says, “these things can go together and create this type of heart problem sometimes. There’s no simple recipe. It’s a very complex mix of nature and nurture.”
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At the crack of dawn on an April morning in 2015, Jenny and Andrew arrived at Children’s National with their 10-week-old daughter in their arms. It had been a mostly sleepless night for all of them. Keely, who wasn’t allowed to eat before the surgery, had been up crying. Her parents had laid in bed worrying. They’d been told it was a routine operation, but this was open-heart surgery on a baby, after all, so they feared the worst.
As they sat in the hospital cafeteria picking at french fries, they waited for updates to appear on the pager that the hospital had given them. A message told them that the anesthesia process had started. Another informed them that surgery had begun. Another told them that their little girl was on the bypass machine. For the O’Briens, that was the most terrifying part. A baby’s heart, about the size of a walnut, usually beats 120 to 130 times per minute. For 15 minutes during the operation, Keely’s heart would be stopped. In that time, a bypass machine does the work of the heart, injecting oxygen into the bloodstream while a surgeon opens the heart, patches the holes and builds two valves out of the single working valve. “It’s just a horrible thought,” Jenny says.
She and Andrew had met through mutual friends at the University of Maryland more than a decade earlier. At the time, Andrew was a recent Maryland graduate living in New York, and Jenny was still a student on the College Park campus. They started dating and eventually moved in together, living in Rockville and Gaithersburg before marrying in 2007 and settling in Glen Echo. Andrew got a job at DCI Group; Jenny worked in human resources and event planning before staying home to care for Keely. “Up until this point, we had nothing that had caused any kind of stress or worry or concerns close to this,” Andrew says.
For Jonas and his team in the operating room, the clock was ticking. Using an echocardiogram that was performed the day before, he had mapped out what he would have to do to fix Keely’s heart. In more complex surgeries, Jonas and his colleagues rely on printed 3-D models, but they didn’t need to do that for Keely. “We have a very limited amount of time to work in,” says Jonas, who co-directs the Children’s National Heart Institute. “We have to work in the heart. We have to stop the heart. We have to cut off the blood supply and the oxygen supply to the heart muscle the whole time that we’re working inside the heart. So that basically starts a stopwatch, and you have to be able to go from beginning to end, and when you’re done, you’re done. You have to finish in that time. Two to three hours. You do not get any extra time.”
All surgery can be emotional, says Jonas, a father of three, but pediatric surgery can be even more difficult. In his textbook, he warns medical students of the challenges ahead. Seeing life-threatening heart problems in newborns can be painful, he says. Talking to parents about the risk their child faces is hard, and telling them that their baby has died is even worse. “On the other hand,” he writes, “there is no greater reward than to be able to save a child.”
For three hours, the O’Briens waited. Their priest came to pray with them. They glanced at magazines. They held hands, sitting silently, watching the pager for news. They got a message when Keely was off the bypass machine, and another, finally, when the surgery was over. “Keely’s doing fine,” it read.
Fine, they wondered. What does “fine” mean?
A few minutes later, outside the surgical suite, Jonas assured them that the surgery had gone well. The O’Briens went to the intensive care unit and saw Keely resting peacefully. They had never noticed how blue she’d been from the lack of oxygen in her blood. Now her skin looked pink, and whatever wires and tubes were connecting her to the machines and monitors around her were hidden beneath a blanket.
Dr. Richard Jonas, who helped pioneer open-heart surgery on newborns, operated on Keely in 2015. He often receives holiday cards and photos from the families of children he’s treated. Photo by Lisa Helfert
“I remember coming in and standing back about a foot thinking, what can I touch?” Jenny says. “The nurses were helpful, saying, ‘You can touch her now. It will be OK.’ ”
Jenny stayed by her daughter’s side in the hospital, talking to her, changing her diapers, reading Harry Potter books. “I tried to make a point to help the nurses,” she says, “not because they needed my help, but for me to learn how to take care of her. For me, it felt like I was still being her mother. I needed that connection.”
Andrew came and went, trying to keep life as normal as possible for Keely’s brother, who hadn’t been too thrilled about the arrival of a little sister in the first place. “We told him that she had a heart issue—we’re explaining this to a 3½-year-old. We explained we would be going to the hospital.”
Keely slept for two days. Then, as Jenny held her daughter’s hand, she felt a gentle squeeze. “It was the greatest thing in the world,” she says. “I knew she was coming back.”
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When Jonas joined the Children’s National staff in 2004, the hospital performed about 200 pediatric heart operations a year. That number has roughly tripled, he says, due in part to many smaller hospitals closing down their pediatric heart surgery programs. Jonas had also developed an international practice at Boston Children’s Hospital that attracted patients from Persian Gulf countries, and many of those patients followed him to D.C. “It’s come a long way,” he says of the cardiology program at Children’s National.
Four years ago, Chevy Chase resident Grace Smith gave birth to her second child at D.C.’s Sibley Memorial Hospital, and doctors told her and her husband, Campbell, that they were concerned about the baby’s blue coloring. As with Jenny O’Brien, Grace’s ultrasounds hadn’t shown any signs of a problem. Doctors quickly diagnosed the boy with transposition of the great arteries, the congenital heart defect that Jonas had watched his mentors in Boston fix for the first time 30 years earlier. “We didn’t get to hold him or really get to look at him,” says Grace, 42, a former editor for National Geographic Kids. “They just held him up really quick and then took him away to hook him up to 1,001 tubes.”
Within a few hours, Campbell was following behind the ambulance as it headed to Children’s National—Sibley does not perform pediatric heart surgeries—and Grace was alone in the maternity ward, hoping that surgery would save her son. “That night was so quiet,” she says. When she heard that her baby’s body wasn’t getting enough oxygen, she worried that he might be developmentally delayed, but the next morning a pediatric cardiologist from Children’s National called and put her fears to rest. He said her baby’s condition was fixable.
“They were just going to switch this artery with that one and everything was going to be fine,” Grace says. “I remember him saying, ‘This is something we do almost every day.’ ”
The newborn spent a week in the hospital while doctors waited for him to get bigger and stronger so that Jonas could operate. In that time, the Smiths settled on a “good, strong family name” for their son, Grace says. They named him Campbell Montgomery: Campbell for the boy’s father and grandfather, Montgomery for his great-grandfather.