At a glance, it’s impossible to tell what 3-year-old Charley Grace Alverson’s little heart has endured.
“People who meet Charley for the first time have no idea she’s gone through heart surgery,” says her mother, Lynsey, of her typically talkative and energetic daughter.
It’s not just one surgery. It’s two open-heart surgeries within her first three months of life and another surgery in May 2023 that placed a pacemaker to correct an arrhythmia. It was one of many examples of specialists across Atrium Health Levine Children’s working together to ensure the best care for Charley.
As part of a best-in-class heart program that serves patients across the Carolinas and beyond, Levine Children’s physicians and teammates specialize in pediatric heart care, working as one fully comprehensive team to lead the region’s strongest pediatric heart program. This united program allows for the seamless continuation of care for heart patients, their families and their support systems in Charlotte, Winston-Salem and across the Carolinas.
Specialized Team Care from Birth
Charley’s care began shortly after she arrived.
“After she was born, she wasn’t crying much, had a blue haze to her and was making abnormal gurgling noises,” Lynsey says.
Charley was transferred to Brenner Children’s Hospital in Winston-Salem, N.C., to receive the elevated level of care she might need, such as extracorporeal membrane oxygenation (ECMO), which uses a pump to circulate blood through an artificial lung back into the bloodstream of babies who are sick.
Doctors later determined that Charley didn’t need ECMO, but while she was there, pediatric cardiologist Dr. Michael Walsh discovered her heart defect - total anomalous pulmonary venous return (TAPVR), which requires surgery. Walsh contacted colleagues at Levine Children’s Hospital in Charlotte, N.C., to work together on the next step in her care. Because of the urgent need for surgery, they decided that airlifting Charley to Levine Children’s Hospital was the best option.
Lynsey was discharged from the hospital just in time to make the trip to Charlotte with her husband, Cameron. At 3 days old, Charley had her first open-heart surgery, led by Dr. Paul Kirshbom, a pediatric cardiothoracic surgeon at Levine Children’s Hospital. All went well, and Charley was discharged just two weeks later.
“We were amazed,” says Lynsey. “We have nothing but fabulous things to say about Levine Children’s and the care we receive in Charlotte and Winston-Salem. We think Dr. Kirshbom walks on water. And Dr. Walsh has always been incredibly responsive to our concerns and array of questions. We adore him.”
A Second Open-heart Surgery
The Alversons returned to their home in King, N.C., and Charley seemed fine. Three months later, though, a routine echocardiogram showed Charley had scar tissue buildup and narrowing of her veins. This caused the blood pressure in her lungs to be much higher than normal. Walsh recommended Charley return to Levine Children’s Hospital for a cardiac catheterization procedure to help open her veins and hopefully avoid surgery.
Charley developed labored breathing, and after more coordination among care team members at both locations, the procedure date was moved up. Once the procedure began, the care team soon realized Charley needed more than a cardiac catheterization, and Kirshbom performed Charley’s second open-heart surgery.
“It was not the news we wanted to hear, but we wholeheartedly trusted the team at Levine Children’s,” says Lynsey.
After the successful surgery, 3-month-old Charley spent 12 days recovering in the hospital and was discharged.
Neurodevelopmental Help and a Pacemaker
Charley then continued returning to Levine Children’s periodically to meet with the cardiac neurodevelopmental team, which helps patients who have had heart surgery early in life with developmental challenges.
Charley, now eating and drinking as expected for her age, sees Walsh every six months for heart checkups. Her numbers had stayed within a healthy range until Walsh discovered an arrhythmia in spring 2023. After Walsh set up Charley on a device to monitor her heart rate at home, her parents saw how her rate ranged wildly, from 29 beats to 220 beats per minute.
Walsh again connected with the larger care team, and Charley again headed to Levine Children’s Hospital for surgery to receive the pacemaker that keeps her heartbeat stable.
Since then, Charley has done well. She has gone into superventricular tachycardia, an arrhythmia that affects the heart’s upper chambers, twice but it corrected itself both times and requires monitoring. If it continues, her doctors may adjust her medication. Cameron said that doctors hope the worst thing Charley may have to endure for the rest of her life will be minimally invasive tests and procedures.
“We’re definitely blessed,” said Cameron. “There have been several times when she’s had an incident, we call and they tell us, ‘She needs to get to the hospital now.’ Without those hospitals being as close as they are to us, we don’t know that we would’ve made it in time.”
It also helps that whether the care is in Charlotte or Winston-Salem, all members of Charley’s care team are in synch.
“Knowing that her doctors are in contact with one another makes us feel good,” Lynsey said. “Either place is like a home for us. You don’t want a hospital to be your home, but it’s nice to feel like you have that home and that family.”
Brenner Children’s Hospital is now part of Atrium Health Levine Children’s! Everything you know and love about your child’s care is staying the same, now with easy connection to an even greater family of care. Learn more, and see how the best kids’ care just got better.