- Colton Reale was born with hypoplastic left heart syndrome (HLHS), a severe congenital heart defect that leaves one side of the heart underdeveloped.
- He underwent three open-heart surgeries to try to correct the defect before doctors put him on the transplant list.
- After three false alarms, he finally got the heart he needed this past fall.
For most of 2024, Colton Reale’s fingers were blue.
The 5-year-old from Brick was born with a heart defect, and it was getting worse. His oxygen rate declined to the point where he lived at the Children’s Hospital of Philadelphia (CHOP), hooked up to intravenous medication as he awaited a heart transplant.
After 10 months in the hospital and three agonizing false alarms, a suitable heart arrived. On Nov. 1, after 10 hours of preparation and surgery, parents Kelly and Daniel Reale got to see their son in a whole new light.
“All of a sudden he was pink,” Kelly Reale said. “He was like a different person. He always had a blue tinge to him. We were in awe that his fingers were pink.”
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Colton came home a few weeks later. Before long he was playing with his 7-year-old brother Cameron, able to run through the house without stopping to catch his breath.
In early February, three months out from the surgery, a key milestone passed: His immune system had recovered enough for the Reales to welcome visitors safely. On Saturday, they’re having some family over for a holiday that takes on a whole new meaning.
“To celebrate Valentine’s Day,” Kelly Reale said. “You know, his heart.”
‘King of the hospital’
Colton Reale was born with hypoplastic left heart syndrome (HLHS), a severe congenital heart defect that leaves one side of the heart underdeveloped. The condition affects about 1,000 babies a year in the U.S., but only 10% to 20% eventually need a heart transplant.
Colton underwent three open-heart surgeries to try to correct the defect before doctors put him on the transplant list. From January through October 2024, as he lived at CHOP, something unexpected transpired.
“Before he came to the hospital he was a shy kid in preschool — he wouldn’t speak to the teacher at all,” Kelly Reale said. “After two or three weeks at CHOP, I don’t know what clicked, but he would talk to anyone and everyone. He thought he was king of the hospital, and that definitely made his stay easier.”
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Kelly, who works in veterans affairs, and Daniel, who works for the business analytics firm Dun & Bradstreet, took turns between staying at CHOP and living at home with Cameron.
“They’re really out of central casting for heroic and dedicated parents,” said Dr. Matthew O’Connor, medical director of CHOP’s heart failure and transplant program. “One of them was always at his bedside, and this is while they’re both holding down jobs. It made a difference for Colton, no question.”
Three times between July and mid-October 2024, the Reales got a call that a heart for Colton had been located. All three times, it was a false alarm — once because the donor family backed out and twice because the heart wound up falling short of quality standards.
“That was painful, but we want the perfect heart,” Kelly Reale said.
“We usually expect one false start,” O’Connor said. “Three certainly added to the stress of the family.”
The fourth time proved to be the charm. It was worth the wait.
“I think were in a little bit of disbelief that it actually happened,” Kelly said.
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A thank-you, and a message
Congenital heart defects are the most common birth defect, affecting 1 in 110 babies born in the U.S. The improvements in treating them have been dramatic. The one-year survival rate for pediatric heart transplant patients is 95%. Colton likely will, in 15 to 20 years, need another transplant, but “as time goes on that time (frame) gets pushed out further as we do better with immune suppression treatments,” O’Connor explained.
In the meantime, Colton is running around the house with his big brother — a beautiful sight.
“Nothing stops him,” Kelly Reale said.
“From the outside you can’t tell these kids any differently from any other child, and that’s very gratifying to see,” O’Connor said.
Colton’s parents are planning a big celebration at Monmouth Park in May, shortly after Colton turns 6, and in September he will return to school as a first-grader at Veterans Memorial Elementary in Brick.
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The Reales don’t know where Colton’s new heart came from. Through an intermediary transplant organization, they will send the donor family a thank-you letter. They know that someone else’s tragedy enabled Colton to live. Whether they get a response or not, they’ll never forget the supreme act of kindness.
“We think about the donor family all the time,” Kelly Reale said, fighting back tears. “We’re very thankful for them.”
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The Reales want their story told to help reassure other families who are dealing with pediatric heart disease. For them, Kelly has a message.
“There’s definitely dark times,” she said. “But mainly, I would say think about the possibilities. It’s a roller-coaster, but these kids can lead normal lives. They’re very resilient.”
For more information about congenital heart disease in children, visit www.chop.edu/conditions-diseases/congenital-heart-disease.
Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at [email protected].
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