When Patrick Lowery was born, he had 10 fingers and 10 toes, wailed upon delivery and, by all other accounts, appeared a normal, healthy baby. Twenty-four hours later, he was anything but. Lowery was hemorrhaging and having seizures, and doctors detected his kidneys were failing. They didn’t think he was going to survive.
Lowery had a heart defect called coarctation of the aorta, which means the blood vessel that carries blood away from the heart was narrowing. He was transferred to another hospital, where a surgeon waited for his other symptoms to stabilize before repairing the aorta using an artery in Lowery’s left arm.
Today, Lowery is a 30-year-old roofer, husband and father in New Jersey. He played sports like basketball and baseball growing up and — save for receiving a stent in his heart, which helped to treat a period of high blood pressure and migraines in college — he’s more or less lived the healthy, normal life his parents thought he would during those first 24 hours. “I go to work and I’m fine — I don’t feel any pain,” he says.
That doesn’t mean Lowery doesn’t think about his heart defect. In fact, his son, Charlie, was born on May 23, 2018, with the same condition. But unlike Lowery’s parents, he and his wife learned about it during the pregnancy. And, unlike Lowery, the surgery Charlie underwent at just two days old didn’t involve a graft, but rather the stretching of the aorta that should grow as he does. “You’re going to live like a normal kid,” Lowery wants him to know.
Lowery is among a new group of adults who are survivors of pediatric heart surgeries. Before the 1970s and 1980s, many such surgeries didn’t exist and babies born with congenital heart defects didn’t make it to adulthood; many didn’t even make it to their first birthdays, says Dr. Peter Pastuszko, the pediatric heart surgeon at the Mount Sinai Hospital who operated on Charlie. Since then, the procedures have advanced such that 90-plus percent of children are surviving them compared to about 50 percent in the ’80s and ’90s. “We’ve gotten so much better at taking care of those kids,” Pastuszko says.
Here, five other adult survivors share their stories:
[See: 10 Concerns Parents Have About Their Kids’ Health.]
Yolanda Dickerson
All Yolanda Dickerson wanted for her 20th birthday was for her parents to stop telling her she was going to die. She’d been hearing it all her life since doctors told the family she wouldn’t live past her teens due to a heart defect requiring open heart surgery at 2 and a half years of age. “My parents spent a lot of time trying to stop me,” Dickerson remembers. “Sit down! Don’t run! Stop climbing trees!” they’d say.
But Dickerson didn’t listen. She ran around as much as her brothers growing up, and even forged her doctor’s signature at age 17 in order to compete in a state track meet. She won the 100-meter dash. “I still look at the gold medal today and smile,” she says.
Today, Dickerson is 44 — and only slowed down to have her daughter 17 years ago. She works as an analyst for a medical management group in Raleigh, North Carolina, and advocates for heart health as a volunteer at the American Heart Association. Later this year, she’s getting married. “Death will have to hunt me down,” she says.
Alison Bliss
Alison Bliss was on a California beach when a man approached her. “Did you have open heart surgery?” he asked. Like him, she had — six, to be exact. But unlike him, she wasn’t afraid to wear a bathing suit revealing the scar that had tipped him off. “He said it was amazing to see someone showing their scar and being confident,” remembers Bliss, a 29-year-old in Howard County, Maryland. “That always stuck with me.”
Bliss has always seen her scar as part of who she is — she even remembers wanting to wear a bikini around age 4 or 5 and not understanding why her mom was hesitant. “It doesn’t bother me; I’m fine; I’ll share my story,” she says.
Bliss’ story began with a diagnosis of transposition of the great vessels — or when some of the heart’s main vessels aren’t in the right places — at two weeks old. She had four surgeries to correct it before age 4 at Children’s National Medical Center in Washington, D.C., and Boston Children’s Hospital, and her last two in 2002 and 2013 to continue repairing the heart at Johns Hopkins Children’s Center in Baltimore, where her Boston surgeon moved.
All the while, Bliss says she’s been able to have “a pretty normal life.” She was a competitive cheerleader in high school and, in college, she continued to cheer while studying communications. Today, she’s married to her college sweetheart, works as a marketing and events manager and coaches a cheerleading team on the side. “It takes an emotional toll on everyone,” she wants parents of kids like her to know, “but you fight through it, and in the end, you’ll all be better.”
Whitney Pierce
Whitney Pierce was 11 years old when she decided to become a nurse. Born with a heart defect that makes one of her heart’s chambers essentially useless, she’d had her first heart surgery at three days old and two more before age 6. In other words, she’d spent enough time at the hospital by then to know what her future workplace might be like. “It’s really the nurses who get to know their patients,” she realized when a nurse bent the rules to give her a tiny sip of water before a cardiac catheterization procedure.
Since then, Pierce completed college and nursing school, and bought a house and a dog. Now, at age 30, she works with heart patients at Children’s Mercy Kansas City, where she received care as a child. She encourages parents to teach their children about their heart defects so they can take control of their care when they start seeing adult practitioners, and to not scare themselves by doing too much internet searching about their children’s conditions. Meantime, she assures them that while the process is overwhelming and often frustrating now, it passes. “I spent months in the hospital [as a baby and toddler] and I don’t remember any of that,” Pierce tells them. “It doesn’t last; it does get better.”
[See: Best Hospitals for Pediatric Cardiology & Heart Surgery.]
Cassidy Collins
As a kindergartner on Valentine’s Day, Cassidy Collins wasn’t trading valentines. Instead, she was standing up in front of her class, telling her classmates about the importance of heart health and her own heart defect — transposition of the great arteries.
Now, Collins knows if she was born just 10 years earlier — in ’87, not ’97 — she probably wouldn’t be here today since the open heart surgery that saved her life wasn’t available then. She was only six hours old when she had her first procedure at Duke Children’s Hospital, where she was flown the night she was born, since her parents and doctors didn’t know before she was born that anything was wrong. Collins has had five heart procedures since at Duke and Levine Children’s Hospital in Charlotte, North Carolina, the last one at age 16. “For having a heart defect, I’m a pretty healthy individual,” she says. “I grew up playing sports; I grew up doing musical theater and dancing.”
Today, Collins is a rising junior at UNC-Wilmington, where she’s majoring in communications and creative writing. She also volunteers with the American Heart Association and Camp Luck, a summer camp for kids with heart disease. “I may have had different experiences [in life],” she says, “but not any difference in quality of life.”
[See: Best Children’s Hospital National Rankings.]
Margaret Erath
For Margaret Erath, the time she spent in the hospital as a child due to a defect requiring open heart surgery at age 4 wasn’t so bad: “It was kind of an adventure … we had hours to get up and go to the playroom full of toys and other kids to play with,” she recalls. In fact, Erath and her family kept in touch with another family for years and enjoyed annual picnics together.
While she suspects her parents would tell a more wrenching story, Erath’s experience as a pediatric heart surgery survivor has remained mostly positive, save some self-consciousness particularly during her teenage years about the prominent scar across her chest. “I got to the point where I said, ‘I don’t really care — this is part of me,'” she says.
Today, Erath, 54, is a married mom of three in Chester, New Jersey, where she’s a church music director. She’s certified by the volunteer program WomenHeart as a community educator to give talks about women and heart disease — something she didn’t think she’d relate to until she got a pacemaker to treat a heart palpitation that may or may not be related to her childhood surgery. “That in itself was kind of life-changing,” she says, “to meet other people who have been there and who understand.”
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Where Are They Now? Stories of Adult Survivors of Pediatric Heart Surgery originally appeared on usnews.com
