Five years ago, a pediatric cardiologist hatched a plan with a seven-year-old patient named Kyler. Kyler had a tough couple of years as he waited for a donor for a heart transplant. In fact, his heart had stopped – and he had technically died – three times. Kyler’s cardiologist, Gonzalo Wallis, MD made a special prescription one day: Kyler needed to play. Dr. Wallis handed him a Nerf blaster and grabbed one for himself. Together they sought out an unsuspecting victim. They found Theresa Hutchinson, MSN, CPNP, who became the target for the cause.
This year, Kyler’s little sister Adalyn – who shared her brother’s same heart disease – also needed a heart transplant. She was cared for by many of the same providers who helped her brother, including Hutchinson. Theresa welcomed Adalyn with a Nerf blaster. The two sought out Dr. Wallis. Hutchinson yelled “Payback!” as sweet, little Adalyn unloaded foam darts for five minutes on the cardiologist, who happily played along.
“There are not many doctors who would just come in, sit down and play with your kids, or let them shoot them with a Nerf gun,” laughs Alisha Bebber, Kyler and Adalyn’s mother.
Alisha faced something nearly unthinkable for a mom: Having two children with a heart condition who needed transplants within a few years of each other. Although their disorder – hypertrophic cardiomyopathy – is genetic, the fact that both Kyler and Adalyn inherited the disease was still difficult for the family. The care teams at Atrium Health Levine Children’s and Atrium Health Sanger Heart & Vascular Institute have grown close to this family. The pediatric heart transplant team is the only team to perform heart transplant in the region. The physicians on the team are internationally renowned in an acclaimed program who are not only experts in fixing hearts, but also in caring for the families. Prescriptions sometimes call for laughter and foam darts.
“To do our job right, we have to take care of each of these kids as if they are our own,” says Dr. Wallis, medical director of pediatric heart transplant and vice chair of pediatric cardiology. “By extension we take care of their families equally. They are part of our transplant family.”
As tough as it was knowing that both of her children needed heart transplants, Alisha felt confident and comfortable with the care her children received.
“I feel like the doctors and nurses are part of my family,” Alisha says. “We’ve been in and out of the hospital for the last six years. The nurses have always taken care of my kids, and the doctors have always been wonderful, too.”
A Second Transplant for One Family
Adalyn had heart disease, but for seven years, no one could tell. When her big brother Kyler was diagnosed with hypertrophic cardiomyopathy, the family tested her for the genetic disease. The test revealed Adalyn had it as well. The diagnosis was hard to reconcile as Adalyn was such an active girl who loved to dance, including taking classes in ballet, hip hop, acrobatics and tap. But earlier this year, when Adalyn was eight, symptoms developed as her heart grew weaker.
“Adalyn couldn't walk from the parking lot to the office, so her dad had to carry her. If you know her as we do, she's super active and just flutters all over the place – she wasn't herself,” Dr. Wallis says.
Adalyn was placed on the heart transplant list in June. In September, a donor heart became available.
“When doctors told us that it was finally time, we were relieved. We didn't want to her get as sick as Kyler,” Alisha says. “We were excited, but we were also nervous about all that she’d have to go through.”
During the five years between Kyler’s transplant and Adalyn’s, not much has changed from a surgical perspective. But during the year of COVID-19, much has changed from a procedural perspective. Levine Children’s Hospital implemented extensive screenings of patients and visitors. There were new protocols implementing social distancing, personal protective equipment (PPE), pre-procedure COVID testing, and cleaning to preserve a ‘COVID-Safe’ care environment. Organ donors were even tested for COVOD-19. This time, visitor restrictions meant that only Adalyn’s parents could be in the hospital. Therefore, other relatives and family friends had to offer support from afar.
“We’ve made a tremendous effort in creating policies and procedures that give our medical providers safety checks and balances, such as masks, gowns and protective equipment to wear while evaluating a patient,” Dr. Wallis says. “So, we're not afraid to perform any type of surgery because we can protect our team and the patient.”
Even with the additional work and safety protocols, the pediatric cardiovascular care team did not slow their pace. In fact, they have already performed more surgeries this year than last.
“We have not compromised our surgical service in any way, shape or form, meaning we still provide fully functional, fully operational surgical services to all patients,” says Thomas Maxey, MD, pediatric heart transplant surgical director and chair of cardiovascular and thoracic surgery. Extensive COVID-safe protocols allowed Adalyn – and all patients – to experience no delays in life-saving surgical care, even amid a pandemic.
When Adalyn woke up after her surgery, she asked her parents when she would get her new heart. They explained that she already had it, the transplant was successful. Adalyn was up and walking the very next day. Ten days later, she went home, feeling more like the active little girl she really was.
Just as COVID-19 affected her hospital experience, it is affected Adalyn’s recovery, too. Transplant recipients have suppressed immune systems, so they are at higher risk of complications from COVID-19. Doctors transitioned much of her follow-up care to virtual medicine, allowing her to get her labs done at a facility near her home and to consult with doctors through video appointments.
“We have advanced our pediatric virtual care offerings this year to ensure that patients can receive the follow-up care they need safely from the comfort of their homes,” Dr. Maxey says. “For a transplant patient, that's even better. Why give them any more exposure risks than they need?”
Complex Cardiac Surgeries, Close to Home
“I can't imagine a more stressful time for a family than when a child needs a heart transplant. Some families face the added burden of packing up their stuff to move into an apartment in Philadelphia for three months,” says Dr. Maxey. “In Charlotte, we’re fortunate that we have no need to do that.”
The pediatric team performs about 10 pediatric heart transplants each year. The comprehensive care offerings available allow the transplants to be done successfully here.
“Heart transplant patients need to be in a comprehensive medical center that can handle any complications that may arise after the surgery, including kidney, neurological or gastrointestinal issues. About 95% of the time, patients flow right through, do quite well, and they do not need any of those things,” says Dr. Maxey. “But you should always have a full multidisciplinary team available to prepare for any possible complications.”
Ready to Dance Again
It has been four months since Adalyn received her new heart. Today, Adalyn now faces a problem that her doctors welcome: She wants return to her dance classes. Due to COVID-19 and her compromised immune system, she will need to stay home from classes a little while longer to reduce her exposure risk. In the meantime, Adalyn enjoys playing with her family’s dog and their goats. Her mom says that she is back to her old self and doing wonderfully.
As Alisha watches her daughter heal and keeps up with Kyler, who is fully back to his active self, she remains grateful to the families of the donors who provided her children with their new hearts, knowing the great kindness they offered after experiencing unspeakable loss.
“It's certainly an honor to provide care to these very sick kids who need a heart transplant,” says Dr. Maxey. “But none of these treatments and care are available without the incredible generosity of donors and their families. It truly is the ultimate gift.”
Learn more about Sanger Heart & Vascular Institute and Levine Children’s pediatric cardiology and heart surgery program or call 704-373-1813 to make an appointment.
