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
The morning of his surgery, little Campbell was crying. “Mommy, why was I crying?” the rambunctious 4-year-old asks as he listens to his parents tell the story of his birth.
“You were a hungry baby,” she tells him. “They couldn’t feed you before the surgery, so you were mad.”
Now, young Campbell, or “C Mo,” as he’s nicknamed, likes to show off the tiny scar on his chest, practically the only sign he still carries of his difficult beginning. For his first three years, he saw a cardiologist monthly. Now he goes just once a year. “He has energy,” his mother says as he and his older brother, Hugh, tussle around the family’s home. “He’s very athletic. I think he could be an Olympian if he wanted to.”
“An Olympic runner!” C Mo says.
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Not every child who goes through neonatal heart surgery will be able to run marathons, Jonas warns. Some will face exercise limitations. A small percentage suffer developmental delays or behavioral problems, but usually those are mild. “The majority of kids who have a reparative operation in the newborn period can go on and have essentially a normal quality of life,” he says.
Typically, though, they need to see a cardiologist regularly to make sure their heart valves aren’t breaking down. Like hips and knees, heart valves can wear out over time, Jonas says. Children like Keely, who have reconstructed valves, face a higher risk than others. But that’s something a cardiologist should spot long before parents notice anything is wrong. “It is important that heart problems are picked up before there are signs and symptoms,” Jonas says.
As she runs across the kitchen laughing and screaming, Keely shows no signs of the problems that she once faced. “After the surgery, we got a chance to take a step back and realize we had a healthy girl,” Andrew says.
Still, she was petite for her age. Her parents say she probably always will be. She quickly started putting on weight, though, and developing chubby baby cheeks. As the months passed, Keely hit all the developmental milestones her parents were looking for. She crawled on time, and talked before they thought she would.
“But I still felt on edge,” Jenny says. She worried that something else could go wrong—Keely still had one unresolved heart problem to address. A year after her first surgery, she was back at Children’s National to repair her narrow aorta. During a 90-minute operation, doctors inserted a balloon through an artery in Keely’s leg and up to her heart to expand her aorta. The surgery was a success, and should be her last.
From the O’Briens’ living room, Liam lets out a wail that drowns out the Disney movie on TV. Keely pinched him, he says, as retribution for standing on her chair. Despite these occasional squabbles, the O’Briens say, the two children have become close. Liam’s reluctance about having a baby sister went away when she came home after her first surgery. He started hovering over Keely, and as they got older, he made it his job to watch over her on the playground. “It made us such a strong family,” Jenny says. “It made Liam fiercely in love with his sister.”
Sitting at their breakfast table, below walls decorated with family photos, the O’Briens open a bag filled with dozens of brightly colored beads. Each one represents one of Keely’s procedures—every needle prick, cardiogram and X-ray—and signals a tiny victory. “She’ll have a lifetime relationship with a cardiologist,” Andrew says, but already the visits are becoming less frequent. Jonas has told the couple that over time, nothing should stand in their daughter’s way. “She’s going to take on mountains,” her dad says. “She’s going to conquer the world.”
David Frey lives in Gaithersburg and has written for Sunset magazine and other publications. To comment on this story, email email@example.com.