The gift of life
State’s first successful pediatric heart transplant recipient celebrates second chance
While many teens will celebrate Christmas by opening gifts from family and friends, Alex Stephens of Hartford will celebrate a gift from a stranger, whose name he probably will never know: The gift of life.
Stephens, 17, is the recipient of the first successful pediatric heart transplant in Connecticut. He received his Christmas gift two months early, on Oct. 23 at Yale New Haven Children’s Hospital.
“It’s better than anyother Christmas gift I could have been given,” Stephens said. “It seemed like I wouldn’t survive without it.”
Yale announced the landmark in a Zoom press conference on Monday.
Stephens, a sophomore at Achievement First Hartford High School, lives with his mother Gladys Rodriguez and 11-year-old sister Nylah Holter. He wants to study electrical engineering in college.
In an interview Monday, Rodriguez recalled the frightening day last year when Holter told her Stephens was ill. Rodriguez was at UConn Health Center in Farmington, recovering from surgery. Before the visit, Stephens told Holter he didn’t feel well — he felt heavy and had difficulty breathing — but told her not to worry their mother by telling her. Holter didn’t keep that promise.
“As soon as we got in there I started screaming ‘There’s something wrong with Alex. He’s not acting like Alex,’ “Holter said.
Rodriguez said Holter “was frantic,
upset crying. She said, get out of this bed now and come take him to the doctor.”
Alex had had a cardiologist for years, because he had supraventricular tachycardia, which his father also had. A visit to his cardiologist led to a visit to Connecticut Children’s in Hartford, which referred Stephens to Yale. There, he was diagnosed with dilated cardiomyopathy, a stretching and thinning of the ventricle, which limits the heart’s ability to pump enough blood.
Dr. Kevin Hall, of the YNHCH heart transplant team, said when Yale cardiologists met Stephens his breathing had become difficult and he was feeling fatigued.
“Over the course of his youth, his heart had steadily weakened and had now begun to fail,” Hall said. He was immediately put on medications and was put on a list for a donor heart.
While on meds, Stephens continued going to school, with teachers and the school nurse keeping close tabs on him. But it wasn’t enough. “They were trying to save his heart with meds, but it didn’t work,” Rodriguez said.
Yale stepped up its treatment. “He spent the next seven weeks in our hospital under close surveillance and treatment. We worked hour by hour to keep him healthy and strong for when a donor organ became available,” Hall said.
A donor heart became available in October 2020. The 11-hour procedure was performed by a team led by Dr. Peter J. Gruber, chief of pediatric cardiac surgery. Afterwards, Stephens stayed at Yale for a few more weeks. His mother stayed in the room with him, and Holter and her aunt stayed in a nearby Ronald McDonald House, though they were not allowed in his room. His friends visited by finding his window and waving from outside.
After the transplant, Stephens was put on a medical regimen to ensure his body did not reject the heart. He is now home, recovering, waiting for the all-clear to go back to school in January.
“Alex shall always require lifelong medical care and follow-up. But thanks to the most mindful and attentive care from very many individuals and teams across the health system, he is able to spend the holiday and New Year with his family and friends,” Hall said.
Rodriguez was so busy with her son’s illness, and her own kidney disease, that she didn’t have time to buy a Christmas tree this year. “We’ll have one next year,” she said. But she still feels holiday cheer, thanks to the family who donated the heart.
“I don’t know anything about them, but I love them. They gave me my son back,” Rodriguez said.
I n February 2019, YNHCH became the first hospital in Connecticut and Rhode Island to receive certification from the United Network of Organ Sharing to perform pediatric heart transplants.
“A few years ago, Alex would have had to travel outside of the state for heart failure and transplant care,” said Jeremy Asnes, chief of pediatric cardiology and medical director of Yale New Haven Children’s Heart Center. “Now that care can be provided right here in New Haven, close to home, close to family.”