Ten-year-old Samantha Haley sits shyly on the couch at home in Damascus, legs curled beneath her, her freckled face tilted downward.
She’s uninspired by conversation about pacemakers, heart defects and surgery. She looks up and laughs as her brothers, Jack, 6, and Connor, 2, race around the living room, crashing into things and causing the habitual mayhem of little boys.
Usually Samantha’s right there with them, minus the crashing, which could jeopardize her pacemaker. Samantha has relied on a pacemaker to make her heart beat since her second month of life. A pacemaker is a small device implanted under the skin that uses electronic stimuli connected by tiny wires to the heart to keep it on rhythm.
Samantha timed her most recent surgery — to replace her pacemaker about a year ago — so she would recover in time for her next 5-kilometer run with Girls on the Run. It was her fourth surgery.
Because of her pacemaker, Samantha can’t play contact sports. But that certainly doesn’t hold her back. “I do triathlons and 5ks,” she said.
This week, Feb. 7 to Feb. 14, is Congenital Heart Defect Awareness Week. Congenital heart defects are the most common birth defects. They affect about 1 in 100 infants — 40,000 every year — according to the Centers for Disease Control and Prevention.
“When she was two weeks old, I went to a routine checkup and they said she had a heart murmur. And I wasn’t really concerned at first,” said Samantha’s mother, Lindsay Haley. She knew that many people have harmless heart murmurs.
Holes usually are detected at around two to six weeks, said Dr. Gerard Martin, a cardiologist who specializes in congenital heart disease for Children’s National Health System. Screenings, during sonograms and by testing babies’ oxygen levels and pulse after birth, reveal the majority of heart defects, but holes in the heart can go unnoticed, Martin said.
Maryland, along with about 33 other states, now require screening by law, he said.
Everything was normal in the first two weeks for Samantha, except she was having trouble eating, which turned out to be related to her heart. The pediatrician referred her to a cardiologist right after the appointment, who told Haley that Samantha had holes in her heart and sent her to a hospital for immediate treatment.
“It was wretchedly scary,” Haley said. “You’re thrown into this whole world of medical jargon and doctors.”
Two months later, “they did open-heart surgery to repair the holes,” she said. But after the repairs, half of Samantha’s heart couldn’t beat on its own.
One week later, Samantha underwent another surgery to have a pacemaker implanted.
When she was 16 months old, a new one was installed.
“They said that one would last 10 years, but she’s very active,” Haley said. Samantha wore it out in 8.
At 9, she got another. How many years will this one last? “We’re thinking 7,” Haley said.
When the conversation turns to books, Samantha perks up.
“I like to read and draw,” she said. “I like pretty much any book.” She’s working her way through the Harry Potter series. She loves Greek mythology, too — Poseidon is her favorite of the gods.
“I want to be a music teacher when I grow up,” she said.
On Jan. 30, Samantha showed off her love of music at a talent show at the family’s church, the Church of Jesus Christ of Latter-day Saints in Mount Airy. She had prepared songs on the piano and guitar, and a violin duet with her best friend, Kaylee Walsman.
In the car on the way there, Samantha turns from reserved to downright chatty, talking about her friends, an upcoming school performance, and her teacher, Steven Zimmerman — the funniest in the fourth grade at Clearspring Elementary in Damascus, she said.
In front of a small crowd of friends and parents, Samantha opens the talent show, playing “Teach Me to Walk in the Light” on the piano. Following several other performances, she and Kaylee go on stage to play “Lightly Row” on the violin. They’ve been taking lessons together the past several months.
After the song, Samantha lowers herself near the floor, crouching intently over her guitar strings to play “Ode to Joy” — the same song Samantha’s mother walked down the aisle to as she married Samantha’s father. She has taught herself to play since receiving the guitar last Christmas.
Haley said she and her husband, Larry, turned to religion when Samantha was undergoing intensive treatment and surgeries in her first months of life. This community came to their side, with meals and support.
In terms of medicine, Martin said, “It has changed dramatically. How we do things has gotten much better over the last two decades. The results of treatment in this era are very successful.”
An audience member wore a T-shirt the family made for Samantha’s last surgery, with illustrated faces of all of the kids in Samantha’s class, grouped in the shape of a heart. All of the kids wore it on surgery day. Beneath the smiling faces, it reads, “and the beat goes on.”