Pediatric heart transplants increase at Levine Children's Hospital
Last year, eight children, ages 3 months to 18 years, got heart transplants at Carolinas Medical Center, a record number for the Charlotte hospital, which is celebrating its 30th year of offering heart transplants.
The program started with adults in 1986 and expanded to children in 1989. Since 2000, the number of annual heart transplants for children remained at one or two and sometimes three until 2012, when surgeons with Sanger Heart & Vascular Institute performed five. That was followed by four in 2013 and five again in 2014.
That compares to Duke University, which performed 14 pediatric heart transplants in 2015.
The increase in the Charlotte program is no accident. In recent years, Sanger and Levine Children’s Hospital, a part of CMC, have added surgeons, cardiologists and nurses who specialize in pediatric transplants and who have worked to recruit more patients from across the region.
Once patients are in their care, they’ve also been more aggressive about advocating for them with the United Network for Organ Sharing, the agency that manages the national computerized list matching donors with transplant recipients.
Dr. Gonzalo Wallis, a pediatric cardiologist who came to Charlotte in 2014, said he and others on the transplant team have been successful in making a case to UNOS when they believe local patients deserve to be higher on the waiting list.
We don’t have enough organs. We need more people to think about donation.
Dr. Gonzalo Wallis, pediatric cardiologist at Levine Children’s Hospital
Only medical and logistical factors are used in organ matching, according to UNOS. The right blood type and size are essential, and transport time has to be short enough to keep donor organs healthy.
But UNOS guidelines also require patients at the top of the list to be hospitalized and on multiple medications, Wallis said. For that reason, patients who are very sick, but can still live at home, don’t make it high on the list. And the shortage of donors can keep people waiting for a long time.
That was the case for 7-year-old Kyler Bebber, who was born with hypertrophic cardiomyopathy, a serious heart defect and common cause of sudden death in athletes. Kyler was revived four times from February 2014 to October 2015 after “episodes of sudden death,” Wallis said.
Although he was very sick, he was able to live at home. Wallis and his colleagues lobbied successfully, and UNOS agreed to move Kyler higher on the list. He got a heart transplant in October, eight months later.
When a donor heart becomes available in the Charlotte region, LifeShare of the Carolinas, the donor procurement agency for 44 hospitals in 22 N.C. counties, offers it to a recipient on the waiting list at Carolinas Medical Center, which includes Levine Children’s. If there is no match locally, LifeShare then searches the national waiting list to identify the best match in another region. (See www.lifesharecarolinas.org.)
Eight children are currently waiting for heart transplants at Levine Children’s, including 6-year-old Caleb Harris of Hickory.
Caleb was invited to a news conference at Levine Children’s last week to highlight the need for donor organs. He was diagnosed with pulmonary atresia, a congenital heart defect, after his birth in Gainesville, Fla., and he had open-heart surgery when he was only 3 months old. Wallis, who had a fellowship in pediatric heart failure and transplantation at the University of Florida, was one of the doctors who cared for Caleb.
In 2013, Kimberly Harris moved with her son back to her hometown of Hickory, and in 2014, when she learned that Wallis had moved to Charlotte, she asked him to be Caleb’s cardiologist again.
Caleb has been on the waiting list for 21 months, Kimberly Harris said. He looks healthy and attends kindergarten at Granite Falls Elementary. But he gets short of breath easily, coughs a lot and needs extra oxygen, from a portable oxygen tank wrapped like a character from the “Minions” movie.
Harris keeps her cell phone nearby at all times, hoping it will ring soon with news that a donor heart has been found. “My dream scenario is that he will get his transplant and be able to live well and not have any repercussions,” she said. “I want him not to be scared.”