Courtesy Sinnamon Family
(ASHEBORO, N.C.) — A one-year-old boy who was born with a congenital heart defect and underwent three open-heart surgeries in his first months of life, now has a new heart.
Easton Sinnamon, of Asheboro, North Carolina, underwent a first-of-its kind heart transplant. The baby not only received a new heart, but also, two weeks later in a separate procedure, received thymus tissue from the same donor.
With the transplanted thymus tissue comes the hope that Easton will have to take much smaller doses of the immunosuppressive drugs transplant recipients typically have to take for the rest of their lives, according to Joseph W. Turek, M.D., Ph.D., chief of pediatric cardiac surgery at Duke University Hospital, and the doctor who oversaw Easton’s transplants.
“This is a huge step in the right direction,” Turek told “Good Morning America.” I would hope that we could envision a day in the near future where we wouldn’t need to use such high doses of immunosuppression with this technique.”
Turek had to seek emergency use authorization from the Food and Drug Administration for the combined heart and thymus transplant, which took place in August.
They were able to try the procedure first in Easton, because he was born both with a congenital heart defect and a deficiency of T cells, which protect the body from infection and are developed in the thymus, an organ that sits close to the heart, according to Turek.
“It’s not very common that you’re going to find a child that has these two issues, and that’s really given us an opportunity to to look at this in a real clinical environment that that we would never have the opportunity to do otherwise,” he said. “It’s also what allowed the FDA to realize this is probably a very safe plan for Easton.”
Kaitlyn Sinnamon, Easton’s mom, said she and her husband were willing to let doctors try the procedure on their youngest child because they knew their son was in a near-death situation.
Sinnamon, also the mom of a 4-year-old daughter, said she found out at her 20-week ultrasound that Easton had a congenital heart defect, which happens in about 1% of births in the United States each year, according to the Centers for Disease Control and Prevention.
Once Easton was born, doctors discovered he also had a damaged heart valve. As a result, Easton underwent three open heart surgeries in his first five months of life, the first of which happened when he was five days old.
Sinnamon quit her job to care for Easton, who spent nearly all of his first year of life in the PICU at Duke University Hospital, about 75 minutes away from the family’s home.
“That was my job, to be at the hospital with him,” said Sinnamon. “I’d get up in the morning, take our daughter to day care, go to Duke for the day, come home, pick her up, do all the normal household things when we would get home and go to bed and do it again, every day of the week.”
Easton spent 112 days on the waiting list for a heart transplant, at times having to be taken off the list because he was so sick.
About two weeks before his transplant, Sinnamon said she and her husband had to make the call to put Easton on life support so that he could stay alive as they waited for a heart.
“He’d been listed for over 100 days … and we weren’t going to let those days that we’d been waiting and fighting be for nothing,” she said. “It was really hard there towards the end. We were scared that we were going to lose him.”
In early August, doctors told Sinnamon the news she had been waiting over three months to hear — they had found a donor heart for Easton.
In an overnight procedure done just hours later, on Aug. 6, 2021, a team of doctors and nurses led by Turek, who also flew to procure the heart and thymus from the donor, transplanted the heart into Easton.
Around two weeks later, doctors implanted thymus cells from the same donor into about 25 to 40 spots in Easton’s thigh, according to Turek.
Sinnamon said that once a new heart was beating inside Easton, his recovery was fast, adding, “With a functioning heart, he just kind of took off.”
For Turek and the transplant team, they closely watched Easton’s internal reaction to his new heart and thymus cells, and saw success.
Easton’s body, which once had “negligible T cell activity,” now has normal levels of T cells, according to Turek, who said the next step is watching to see if Easton has developed enough of a tolerance to go off some immunosuppressive drugs.
“It’s incredibly rewarding to know that something you worked on in the laboratory was able to be translated, and you can actually see tangible evidence that it’s helping someone,” said Turek, who has researched the use of thymus cells in transplants for the past five years. “Especially a child like Easton, who really wasn’t doing well for a long period of time.”
The Sinnamons’ decision to let Easton be the first to receive a heart and thymus transplant could potentially pave the way to help thousands of organ donor recipients in the future, according to Turek. The next stage of his research will be to see if this process can be replicated more broadly, including in people who have functioning T cells.
In the U.S., more than 106,000 people are currently on the transplant waiting list, and 17 people die each day waiting for an organ transplant, according to government data.
“Easton gives us all a lot of hope about what the future could be,” said Turek. “The fact that he needed a thymus and also needed a heart has really allowed us to figure out if this combination of using these two … could increase the longevity [of a donated organ] and decrease the amount of medications that are needed.”
Sinnamon said she and her family are grateful for Turek and the team at Duke University Hospital, whom she said have become “like family,” and for the family of the organ donor, whom they do not know.
“As much as this is Easton, it’s as much the donor’s child as well,” said Sinnamon. “On your happiest day, it’s another family’s worst day, so it’s kind of bittersweet when you get excited because you have to think about what the other family is going through.”
Easton was able to go home in September, where he was greeted by his big sister, Ivy, whom he met then for the first time.
“Because he was doing so poorly at times, we didn’t think we would have everybody together,” said Sinnamon. “Now that we do, it’s so nice to see him and Ivy playing and them both laughing and giggling together.”
In February, Easton celebrated his first birthday at home. He remains on a gastrostomy tube, or G-tube, for his medications and has a tracheotomy to help him breathe, the latter of which Sinnamon said should be removed soon.
“Even through all he went through, he’s one of the happiest babies I’ve ever seen,” said Sinnamon, who described Easton as “very social” and “extremely active.” “It’s funny seeing his attitude and personality come out once we made it home.”
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