Long Island's 1st pediatric heart transplant gives father, son reason to cheer

Justin Cauthen, the first pediatric patient to undergo a heart transplant at a Long Island hospital, opened his eyes after seven hours in surgery and could finally breathe easy.

"When I woke up after the transplant, I felt like a new person," the 17-year-old said Wednesday, "literally a new person. I felt energetic. I felt, like, reborn."

The operation, on March 28 at Cohen Children’s Medical Center near the Queens-Nassau border, came weeks after the hospital received state approval to do pediatric heart transplants — the Island’s first such program — and hours after the heart was harvested. In 2018, surgeons at  Northwell, of which Cohen's is part, performed the first heart transplant at a Long Island hospital — on a 63-year-old woman. 

On Wednesday, Justin and his father, Jamel Cauthen, both of Jamaica, Queens, came to the atrium at Cohen’s for a news conference to thank the team who helped in Justin's treatment, including Dr. Timothy Martens, the lead surgeon, and other doctors, nurses, social workers, pharmacists and hospital staff.

So far this year in the United States, 136 patients under 18 have received heart transplants, according to the Organ Procurement and Transplantation Network, which oversees the nation’s transplant system.

As is typical in organ transplants, anything that could help identify Justin's donor is confidential under the system’s policy. Dr. Jeffrey Gossett, a vice president and system chief of pediatric cardiology at Cohen’s, said that donors and recipients are matched within parameters that include weight, blood type, and age, up to about age 40 for a teen in need of a heart.

Whoever the donor was, Jamel Cauthen said, he can’t be grateful enough and hopes to be able to thank the donor’s family, some day, in person.

"They are what we call heroes," Cauthen said, "they are silent heroes, so thank you."

In a video filmed the day of the surgery, he hugged his son: "I would give you my heart — I wish I could."

He also told Justin: "Ride or die."

Justin, Jamel and his family wore T-shirts: "JUSTIN’S BEAT SQUAD."

Justin will need to take medication for the rest of his life, including drugs to prevent his body from rejecting the new heart.

Right now, he’s on about eight medicines, Gossett said. Long term, it’ll be down to three or four pills twice a day.

More than half of teenagers who get transplants are expected to live with the new heart for at least 15 years, with the possible need for a new transplant later, Gossett said.

Justin first came to the hospital for treatment about a year ago with an abnormally fast heart rate and decreased function, according to Dr. Jake Kleinmahon, the medical director of pediatric heart transplant and heart failure. Justin was stabilized and put on medication. But due to his condition — dilated cardiomyopathy, in which the heart muscle stretches out and becomes larger than usual — the problem often worsens, and it did in Justin’s case. He returned in early March to the hospital with severe heart failure and an "incredibly fast flutter" and clots in his heart, and needed the help of a heart-lung machine. While medicines helped break down the clots, Justin needed a new heart to survive beyond what was projected to be a few months.

He was added to a national waiting list, and when the donor’s heart became available at another facility, surgery was scheduled for Justin at Cohen’s. (The donor's heart was harvested at another facility and brought to Cohen's.)

About 15% of children on the waitlist die before getting a match, Gossett said.

Word came the night before the surgery about the donor heart's availability, Gossett said. Within hours of the heart being harvested, it was being transplanted into Justin’s chest.

Heart transplant surgery costs about $1.6 million on average, according to a 2020 report by the health care actuary Milliman.

Jamel Cauthen said that the family has great insurance.

Regardless, Gossett said, Northwell is committed to providing transplants to any pediatric patient who needs one — regardless of cost and regardless of any Medicaid cuts that Congress may pass.

According to The Associated Press, Republicans in the House of Representatives are on the cusp of passing nearly $700 billion in Medicaid cuts to help fund tax breaks. More than a third of children nationwide are covered by public insurance like Medicaid, according to the U.S. Census Bureau.

"We will do the right thing for a child," he said. "If their family can pay, if their family can’t pay, we make it happen, because that is what pediatricians do. And Northwell has committed to that, we live that."

With his new heart, Justin is looking forward to playing soccer and becoming an engineer and maybe lending his dad a buck or two.

In the Northwell atrium Wednesday, his father said: "If the family of the donor is willing to meet with us, I would be more than happy."

He added, with a laugh: "In fact, I would be willing to take 'em out to dinner, and borrow from you, Justin. Can I borrow money from you?"

By Matthew Chayes

matthew.chayes@newsday.comchayesmatthew

Matthew Chayes, a Newsday reporter since 2007, covers New York City.