1st pediatric heart transplant in state done at Yale

NEW HAVEN — Alex Stephens is on his way back to being a footballplaying teenager, with a new heart he received after seven weeks being watched closely in Yale New Haven Children’s Hospital.

The Oct. 23 surgery on Stephens, 17, was the first pediatric heart transplant conducted in the state, hospital officials said.

“It was one I’m going to remember for a while,” the soft-spoken Hartford teenager said during an online press conference Monday.

His mother, Gladys Rodriguez, teared up as she said, “This has been a really tough year. All this happened in just one year, and to see him now, he’s doing so much better. He’s the old Alex now. You guys gave me my son back and I’m so grateful and I thank you guys from the bottom of my heart.”

“He’s really the hero here, particularly at the end of a year that’s been so difficult for so many of us,” Dr. Kevin Hall, director of the Pediatric Heart Transplant Program and Pediatric Heart Failure Program, said of Alex Stephens.

“We met Alex about 15 months ago after he was diagnosed with really endstage heart failure,” Hall said. “We worked closely with Alex and his family over the course of the first year, and treated him with a tailored medical regiment to ease the workload on his heart. … But despite our best medical efforts, our vigilant hospital care and even our love, these medical treatments were ultimately insufficient.”

Dr. Peter Gruber, chief of pediatric cardiac surgery at the children’s hospital, said it was a long process to develop a pediatric transplant program at the children’s hospital. Comparing it to adult transplants, he said, “Pediatric heart transplantation is similar in the sense that you’re replacing a heart, but almost everything else is different.”

“Children have a different physiology, a different immunology, a different social background,” Gruber said. “So although many aspects of our pediatric heart transplant program may superficially resemble an adult heart transplant program, the specialization is completely different.”

“We have different expectations for transplants from children. We aren’t just shooting for a few more years. We were looking really towards shooting for a full lifetime for these children,” Hall said. “The social and psychological weight of this treatment is felt differently in children at different ages as they mature. … They aren’t just little adults.”

He said Alex, who was discharged two weeks after his surgery, will require a lifetime of care, but, “we are hoping for a long and fulfilling life for him.”

Hall said pediatric patients aren’t normally put on a mechanical device as a long-term treatment as an adult might be. Stephens did spend time on an intra-aortic balloon pump, he said.

In 2019, about 500 of 3,500 heart transplants in the United States were in children, with 600 to 700 worldwide, Hall said, and only one-third of the 56 centers that perform pediatric heart surgery have done heart transplants in younger patients. “The hospital committed over a year ago to this and it does take time to assemble all of the necessary specialists and expertise,” he said.

Dr. Jeremy Asnes, medical director of the children’s hospital’s heart center, said, “Really there were no options for children requiring heart transplant in the state” before now, and six to 10 patients were sent out of state each year. “Alex and his mom put their trust in us, trusted that we had assembled a team that was able to take this on,” he said.

“We learn from every patient that we care for,” Asnes said. “As much care as we gave Alex, we learned from him. He’s part of the foundation of the transplant program. He’s got an important role to play.”

“To see Alex here today really paves the way for everything we’ll do in the future, so congratulations, Alex,” Gruber said.

Cynthia Sparer, executive director of the children’s hospital, said, “It took a combination of some very talented people who were here, as well as some key recruitments,” including Gruber and Hall. The hospital received certification to perform pediatric heart transplants from the United Network of Organ Sharing in February 2019.

“The need to do this well and have all of the expertise in place was critical,” Sparer said.

Stephens had a genetic deficiency in the muscle cells of his heart, Hall said. “There are mechanisms to make energy, to use energy and ultimately to contract,” he said. “Over time, they’re unable to effectively squeeze” and pump blood. “In Alex’s case, we believe the issue was isolated to his heart, and we don’t believe we’ll have any untoward findings going forward.”

Stephens offered advice to future transplant patients: “Be prepared to be stuck in a room and get stuck a lot because there were a lot of tests that they performed. So be prepared.”