Sarah Guy’s cardiologists know what’s coming when she brings cookies to the office. “She’s a negotiator. She comes and negotiates with me what she can do,” chuckles Gonzalo Wallis, MD, a pediatric cardiologist at The HEARTest Yard Congenital Heart Center at Atrium Health Levine Children’s.
While other 11-year-olds might negotiate bedtime or screen time, Sarah’s been working toward things like riding a bike, cartwheeling around the house, or having a sleepover with friends. Since her heart transplant in February 2021, she’s had to ease back into her active lifestyle and has already made incredible strides in her recovery. But that’s no surprise: Sarah has been beating odds all her life.
Sarah was adopted from China at the age of 2 by Angie and Jerry Guy and their children. Shortly after, the Gastonia family welcomed another child, Braxton, also through adoption. Both children were born with heart defects, and while Sarah’s condition seemed stable, 1-year-old Braxton’s was severe. He passed away four months later, surrounded by the family who chose and love him.
As they mourned the loss of their young son, the Guys continued bringing Sarah to Atrium Health Levine Children’s Hospital. Sarah was born with double outlet right ventricle (DORV), where the heart’s two major arteries are connected to the right ventricle, and she needed treatment tto correct it.
Fortunately, the Guys were at the right place. From pacemakers to transplants, kids with heart conditions find everything they need at Levine Children’s Hospital. In fact, U.S. News & World Report recognizes it as one of the nation’s best for pediatric heart care and surgery, and families travel from near and far to see our doctors. “Our program has grown from taking care of kids in Charlotte to taking care of kids in the region,” explains Joseph Paolillo, MD, a pediatric cardiac interventionalist and chief of pediatric cardiology at The HEARTest Yard Congenital Heart Center at Atrium Health Levine Children’s.
By the time she was 3, Sarah had two open-heart surgeries, multiple catheterizations and stents put in. She bounced back each time, and by the fourth grade, she was competing in gymnastics, practicing as many as 8 hours a week. From what her family could tell, her heart was doing its job and doing it well. That’s because on the outside, Sarah was full of joy and energy.
But on the inside, her heart was quietly slowing down.
Inside, she wasn’t fine
In early 2020, at a routine cardiology visit, Sarah’s resting heart rate dipped to the 40s. Follow-up testing showed she was at risk – sudden-cardiac-death risk – and would need a heart transplant. “Everything pointed that her heart couldn’t beat harder than what it was doing,” says Dr. Wallis.
But for the Guy family, things weren’t adding up. “We were like, is this really happening? Look at her. She’s running around and playing perfectly fine. I don’t see anything that makes me think this child needs a heart transplant,” Angie remembers thinking.
Unlike adults, children with heart defects don’t always look or feel sick. Instead of being slowed down by symptoms, like shortness of breath or fatigue, their bodies learn to live with it. “Kids will compensate until they can’t compensate anymore,” says Dr. Wallis. “They’ll keep doing what they’re doing, until they’re so sick, they can’t do anything.”
When Sarah collapsed at SouthPark Mall, it was the sign Angie needed that a transplant was the right choice. “I may not have ever seen the physical things, and she always seemed to be doing fine. But inside, she wasn’t fine,” she says.
Like many families in their position, the Guys were ready to wait weeks or even months to find the right heart for Sarah, butthey only had to wait 16 days.
Sarah received her new heart on February 12, two days after she turned 11. And just in time for Valentine’s Day, the holiday of hearts.
Healing faces in bittersweet places
Throughout Sarah’s transplant journey, Angie says the Levine Children’s Hospital team did everything they could to bring joy and happiness and make the Guy family comfortable where they were. She adds, “In a situation that was the worst we could imagine, they made it the best it could be.”
This included playing games with Sarah and making her laugh, but it went deeper than that. Though Sarah’s heart transplant was a lifesaving relief, their time in the hospital was bittersweet for the whole family. It reminded them of the last time they’d been there with Braxton. When Angie mentioned this to Sarah’s care team, they made sure she was in a different room than the one Braxton had passed in, so they could focus on Sarah without the extra stress and sadness.
Then one night, a familiar nurse was caring for Sarah: She was one of Braxton’s nurses the night he died. “It was healing for us,” says Angie, “to be able to say thank you for giving 100 percent that night.”
For the Guys, Levine Children's Hospital went “above and beyond” to care for Sarah. But for the doctors and nurses, it’s just what you do for family. And as Dr. Paolillo says, “Sarah is part of our family.”
From surviving to thriving
Today, 11-year-old Sarah is back to doing cartwheels and handstands around the house. You’d never guess she was born with a heart defect – or that she had a heart transplant a few months ago.
Though Sarah seemed healthy before the transplant, Angie saw improvements right away. Like in her face, which has a new heathy glow, and her oxygen level, which is now normal (more than double what it was when she arrived in Charlotte).
It’s clear now that Sarah wasn’t as untouched by her condition as she seemed. She’d just learned to live with it – and now, she can learn to thrive without it.
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