Meet Jaron Rosser. He’s an Asheville teenager who has a love of music and a sharp mind for technology. Jaron was born with hypoplastic left heart syndrome (HLHS), a rare heart defect that leaves the left side of the heart undeveloped, requiring three palliative surgeries after birth for survival. HLHS left Jaron feeling worn out and in pain. But Jaron doesn’t have HLHS anymore: Last December, the fifteen-year-old became the 100th pediatric heart transplant recipient at Atrium Health Levine Children’s Hospital.
For Jaron, this major milestone was, of course, much more personal. The heart transplant meant that he once again had the energy for exercise and his hobbies, like composing electronic music and learning about virtual reality. For his mom, the milestone offered peace of mind, as well as special recognition for a son who’d been so strong living with HLHS.
“When I learned that Jaron would become the 100th transplant recipient, it felt great to know how much experience the hospital has. As a parent, I’m thinking, ‘100? That’s impressive!’” says Jaron’s mom Lynn. “Jaron’s obviously so special to us, and it feels really good that he gets to be remembered as someone special for everyone else there, too.”
World-Class Care in Charlotte
When Levine Children’s and Sanger Heart & Vascular Institute began its pediatric heart transplant program, it performed one to two pediatric heart transplants each year. Much has changed. Over the past few years, Levine Children’s Hospital has increased that number fivefold, with 6 to 10 heart pediatric transplants performed annually.
“We have a full complement of tools that allows us to serve patients who have very difficult cases of congenital heart failure often requiring us to perform complex surgeries right here in Charlotte,” says Gonzalo Wallis, MD, Jaron’s pediatric cardiologist. “Charlotte, as well as our state and our region, benefits from having world-class care in their own backyard.”
Jaron’s transplant came during a remarkable year. Even amid COVID-19 and the policy changes and restrictions that came with it, the transplant program at Levine Children’s Hospital continued at full pace.
“It's a testament to Atrium Health and a testament to our leadership that, in spite of the COVID-19 pandemic, we did not stop providing care for people who needed care,” says Dr. Wallis. “We continued to do surgeries, including complex surgeries and transplants at a volume that was even higher than during prior years. Everyone was eager to create processes to put the safety of our patients and our team first so we could continue to do what we love to do without compromising care. To me, that's a huge win.”
A Multidisciplinary Team with a Personal Touch
A successful heart transplant program requires a multidisciplinary team of experts who collaborate closely. For the Rosser family, coming to Levine Children’s Hospital didn’t just give them access to a big team, but it brought the team of specialists – cardiologists, hematologists, immunologists, nephrologists and hepatologists – together under one roof. The family felt this offered much-needed convenience and peace of mind during a stressful time.
“It was really, really nice to go to just one site and to know that they all work together and talk together as a team,” Lynn says. “We felt like we had this extended team of people who were all focusing on Jaron and what's best for him, how to help him, and what he needed. It was amazing.”
“It exemplifies what successes can happen with a multidisciplinary team approach,” says Darci Grochowski, PA-C, MPAS, administrative director of the pediatric transplant program at Levine Children’s. “This 100th pediatric transplant helps us take a moment to pause and celebrate the successes of the team as a whole and how well we all come together.”
A successful heart transplant program requires more than clinical expertise, however. Good care is more than a successful surgery, Grochowski says, it’s also personal support, both before and after the transplant. While Jaron waited for his surgery, child life specialists visited his hospital room to challenge him to games on his Nintendo Switch and music therapists recorded his pulse so that he could compose music to his heartbeat, both before and after his transplant.
“We have the capabilities to offer a personal touch,” Grochowski says. “We want every patient to feel special – because they are. The patient is always at the core of every decision we make, every action we do. We all have a passion for doing what’s best for each patient.”
For the team at Levine Children’s Hospital, transplant patients deserve parties – lots of parties. They throw each transplant patient a celebration one year after their surgery to honor everything they’ve been through. When they’re not facing COVID restrictions, they host gatherings like summer field days and winter holiday parties to bring pediatric transplant patients and their families together for friendship and mutual support.
Looking Back and Looking Ahead
A milestone offers a good opportunity to reflect on the past. For Dr. Wallis, his thoughts turn to what makes him most proud of his work at Levine Children’s: his colleagues.
“I’m most proud of my team,” Dr. Wallis says. “We are all passionate about caring for these kids. There are no big egos. Everything we do is about doing the right thing for the patient, and it’s the work of a lifetime.”
A milestone also offers a good opportunity to anticipate the future. For Jaron, when he thinks about what he wants to do next, he encounters the best kind of problem: having too many ideas.
“I’m looking forward to a bunch of things – I’ve always had a million different interests,” he says. “It’s weird because my life was on pause for so long, and now, it’s like, ‘Do I want to do this or that?’ It’s exciting.”
Learn more about the pediatric transplant program at Levine Children’s Hospital or call us at 704-355-6649.
