(NEW YORK) — Elias Robinson-Rodriquez was just 11 months old when he underwent a type of heart transplant so rare it had previously been performed on only six children globally.
Elias, now 1, was born with a congenital heart defect called transposition of the great arteries, in which the two main arteries leaving the heart are reversed. In Elias’ case, the part of his heart that pumps blood to the body was obstructed, according to Dell Children’s Medical Center, the Texas hospital where he was treated.
Elias’ parents, Abigail Robinson and Christian Rodriquez, said they learned of their son’s heart condition when Robinson was around five months pregnant.
“From the moment that I found out, it was a little hard for me because, you know, it’s our son,” Rodriquez told ABC News’ Good Morning America. “We want the best for him.”
Elias was born on July 14, 2022, about four weeks prior to his due date, according to Robinson.
Just four weeks after he was born, Elias underwent his first open-heart surgery, during which doctors switched his arteries to their correct position.
“It was definitely nerve-wracking to think about our kid … going for open-heart surgery,” Robinson said. “That’s a lot to take in. I don’t know many grown adults that have gone through this, let alone a small infant.”
After a nearly 70-day hospital stay following his birth and first surgery, Elias returned to the hospital in February 2023 for a second open-heart surgery to repair one of his heart’s valves.
In June, Robinson and Rodriquez said they got a phone call from doctors at Dell Children’s Medical Center that would change their lives.
Doctors presented Robinson and Rodriquez with an option to perform a partial heart transplant on Elias, a rare operation that would transplant a live aortic valve from a donor heart into Elias, with the goal of preventing him from having multiple open-heart surgeries in the future.
“Elias is [12-months-old] and he’s already had three open-heart surgeries,” Dr. Carlos Mery, surgical director of the Heart Transplant Program at Dell Children’s, told GMA. “It’s not like you can have innumerable open-heart surgeries in a lifetime, because every time that you go in, there’s more scar tissue and stuff, so it starts getting harder and harder for these patients to lead normal lives in the long-term.”
Mery said the partial heart transplant is a relatively new procedure, pioneered by doctors at Duke University, that is even rarer for pediatric patients.
The procedure could be a breakthrough for children, according to Mery, who explained that kids cannot tolerate mechanical, cow or pig aortic valves in the same way adults do. The procedure allows doctors to avoid transplanting a dead valve, which would then need to be replaced multiple times throughout the child’s lifetime.
“What we do with a partial heart transplant is we basically take a heart that’s otherwise not usable for a transplant — the muscles aren’t good, the functions aren’t good — and we bring it, just as if we were doing a transplant, to our operating room,” Mery said. “In the operating room, we extract the aortic valve, live, and we use that to implant it and replace the valve with the hope that as time goes by, since this valve is live, it will continue to grow.”
When Robinson and Rodriquez got the call from doctors about the first-of-its-kind transplant, they said they were both nervous and excited. Elias was the first pediatric patient in the state of Texas to undergo the procedure, according to Mery and Dell Children’s.
“Everyone was ready for Elias to get that surgery and wanting him to be healthy, but we were also nervous about going back in the hospital and him going under bypass again,” Robinson said. “You always want the best for your child, so to think about that, it can be nerve-wracking.”
Robinson said while she was researching the partial heart transplant option, she found the name of a mom whose son underwent the same procedure. She reached out to the mom on Facebook and learned her son is now “thriving.”
She said that mom’s support, combined with her and Rodriquez’s desire to give Elias the best quality of life possible, led them to choose the partial heart transplant option.
“For us, it was a leap of faith with a team that we knew could do it,” Rodriquez said.
Less than two days after giving doctors the green light on the surgery, Robinson and Rodriquez got another call that would change their lives again. This time, they learned that Dell Children’s already had a donor heart for Elias.
“They were thinking they’d get a call about lab work, and instead we told them a donor had been found,” Mery recalled. “I’m glad because these donors are not that common. For us to be able to get a donor for a partial heart transplant, it needs to be a donor where the muscles aren’t [good enough to make them] a good candidate for a full transplant, which could [otherwise] be the priority.”
In late June, Elias underwent an 11-hour procedure, led by Mery, that saw his aortic valve replaced by that of the anonymous donor.
The surgery was deemed a success by doctors, and Elias was home in time to celebrate his first birthday on July 14.
“It definitely does feel like a new chapter,” Robinson said. “It is a huge relief off our shoulders to not have to worry, in a sense. While there is some [concern], we don’t want to live in fear, so we’re just trying to live our lives right now.”
Robinson said the family plans to take a vacation soon, Elias’ first, where she hopes her son can “be outside playing, letting him be a kid without having nurses or doctors around.”
Mery said Elias will continue to be monitored closely throughout his life, but so far seems to be adapting well to his new valve.
“I’ve known Elias for his whole life, so having seen him grow and struggle with these things, and then seeing an otherwise normal child, it’s a joy,” Mery said. “To see him develop and to give him an opportunity to really have a life in front of him is just amazing … I’m really hopeful that Elias can gave a great life.”
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