Amy Mangan was hopping between pillows and sofa cushions with her two sons, pretending the living room floor of their New Jersey home was boiling lava, when she got a phone call telling her to drive to Boston right away.
For two months, she and her husband, Christopher, had nervously waited for a healthy heart valve to be donated to their 4-year-old son, Jack. The boy had a congenital heart defect, and by the time he was 10 months old had undergone five cardiac operations — including two while in his mother’s womb — but still faced serious potential heart problems.
On May 13, a doctor at Boston Children’s Hospital called to say the hospital had found a donor but shared no details. It turned out to be a young child who had suffered a deadly stroke and had no brain function. The donor had been on a ventilator, and the child’s grieving parents agreed to disconnect it within hours.
The Mangans hurriedly piled Jack and his 1-year-old brother, Declan, in their SUV and drove to Children’s, with Amy Mangan’s parents following in another car. At about 10 p.m. — around 11 hours after his mother received the call — doctors began operating on Jack.
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Over 4½ hours, the surgeons painstakingly replaced two key parts of Jack’s heart and circulatory system with living tissues from the donor: his aortic valve and a three-quarter-inch segment of his aorta, the main artery in the body.
It was the first so-called partial heart transplant in New England, a potentially life-saving cutting-edge operation designed specifically for children, primarily for valve defects. For years, doctors have used mechanical valves or valves from cadavers, cows, or pigs to replace diseased valves in youngsters. Jack’s operation has a distinct advantage over those procedures. Because he received living human tissue, his new valve will grow with the rest of his body, which doctors hope will eliminate the need for risky follow-up operations to insert bigger valves.
The world’s first partial heart transplant took place in the spring of 2022 on a 17-day-old boy at Duke Health in North Carolina. At least 15 other children in the United States have undergone partial heart transplants since then, including nine more at Duke, according to Dr. Joseph Turek, chief of pediatric cardiac surgery there, who pioneered the procedure.
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Seven weeks after Jack’s transplant, the rambunctious blond boy appears to be fully recovered. During a Zoom call in late June, he happily held up several of his 200 monster trucks at his house in Freehold, N.J., including a fire truck with oversized wheels.
“I want to be a fireman,” he said.
Jack pulled up his red New York Fire Department T-shirt to proudly show a 6-inch surgical scar running down his chest. He repeated the mantra his parents had taught him before the transplant: “I’m brave. I’m strong. I’m incredible.”
This was Jack’s sixth heart operation at Children’s. His parents are optimistic it will be his last, given how well the new valve — which opens and closes like a door to let blood flow to the aorta — is functioning. He has more energy than he did before the surgery and has no restrictions on activities.
“The prognosis is excellent,” said Amy Mangan, a dental hygienist, smiling. “There’s nothing holding him back.”
In a way, the path to bring the innovative operation to Children’s began more than three decades ago with a chance encounter in a college dormitory in Evanston, Ill.
Dr. Sitaram Emani, the cardiac surgeon who led the team that operated on Jack, met Turek, now at Duke, when they were freshmen living on the same hallway at Northwestern University. They later became surgeons in training in overlapping residencies at Duke and stayed in touch.
After Turek performed the first partial heart transplant, Emani spoke with him at least a dozen times and became excited about the possibility of doing the procedure at Children’s, said Emani. Children’s had been considering doing partial heart transplants for years, he said, and decided to try it after Turek’s success.
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“We wouldn’t want to do an operation that we think doesn’t have a good outcome,” Emani said. Duke’s track record “emboldened us to do this and to really take a chance.”
The operation is ideal for children who have a defective valve but whose heart muscle is otherwise healthy. Patients with failing hearts are better suited for full transplants. Children’s performs 15 to 20 of those a year, Emani said, but it’s “crazy” to do that if the only problem is a valve; recipients of full transplants must take anti-rejection drugs for the rest of their lives, which pose potentially serious side effects. Patients who undergo partial transplants also receive those drugs, but doctors hope to lower the dosages over time.
The problem with Jack’s heart was identified in an echocardiogram 22 weeks into Amy Mangan’s pregnancy. Doctors diagnosed aortic stenosis, a congenital heart defect that occurs when a fetus’s aortic valve doesn’t form properly, reducing the flow of oxygen-rich blood out of the heart. The narrowing puts stress on the left ventricle — the lower left-sided pumping chamber of the heart — and can lead to a more severe condition called hypoplastic left heart syndrome.
Physicians referred Mangan to Children’s Hospital. At 23 weeks and 28 weeks into Mangan’s pregnancy, doctors performed procedures to widen the fetus’s aortic valve with an inflated balloon, according to Dr. Matan Setton, the pediatric cardiologist at Children’s who has helped oversee Jack’s care. The baby was born in February 2020 and had additional surgeries when he was 11 days old and 10 months old.
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Setton moved to Columbia University Irving Medical Center in New York City soon after Jack’s birth and continued to handle his case. Although Jack generally appeared to be healthy — he played soccer and loved to run — Setton grew concerned the defective valve was making it hard for the left ventricle to relax after it pumped blood into the aorta.
“It’s not that [Jack’s condition] was immediately life-threatening, but we were worried about the long-term health of the left ventricle and what it would mean for him as an adult,” said Setton.
In 2023, after the first partial transplant at Duke, surgeons at Columbia performed similar operations on two children. When Setton returned to work at Boston Children’s last October, he suggested Jack as a candidate for the new procedure to Emani.
Jack was placed on a waiting list for a donated aortic valve in March. The list is maintained by New England Donor Services, the nonprofit that coordinates organ donation in the region. Children’s contacted the group in May when the donor was declared brain dead.
Alex Glazier, head of the organization, said she could not disclose anything about the donor because of confidentiality rules, but she called partial transplants a major innovation.
“It solves a problem for pediatric heart patients because current grafts don’t grow with the child, which leads to additional surgeries,” she said.
An hour after receiving the phone call at 11:30 a.m. telling them to come to Boston, the Mangans left their house in Freehold and got on the road. Christopher Mangan drove.
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“We, of course, hit traffic,” said Jack’s father, who works for a Wall Street broker-dealer. “I was trying to get us there in one piece.” Amy Mangan’s parents followed them because they planned to help take care of Declan, Jack’s younger brother, during the operation.
Amy Mangan spent the drive praying for Jack, his doctors, and the family of the donor, she said. She also repeatedly told Jack that he couldn’t have tortilla chips, despite his protests, because he wasn’t allowed to eat anything before the operation.
The family arrived in Boston around 6 p.m. Emani led two operations over a 12-hour period — first to remove the deceased donor’s heart, which was preserved on ice in a cooler, and then to transplant the aortic valve and part of the artery into Jack. A total of 16 medical staffers participated in both procedures, with the second operation ending around 3 a.m., Emani said.
Emani knew the transplant had worked, he said, when he removed a clamp from Jack’s aorta. The cane-shaped artery bulged with blood that flowed easily from the left ventricle, and no blood leaked back into the heart.
That was the “aha moment,” Emani said.
Jack slept for more than a day after the operation because he was sedated and had a breathing tube down his throat. After medical staffers removed the tube, he awakened.
He promptly told his parents he wanted exactly what he had been asking for in the car ride to Boston: tortilla chips.
Medical staffers and his mother laughed.
“Well,” Amy Mangan said, “Jack’s back.”
Now, Jack returns to Children’s every two weeks for follow-up appointments. He was back last week and is doing fine.
“We feel incredibly honored to have this level of care,” his mother said. “I just knew Jack was in the right hands.”
Jonathan Saltzman can be reached at jonathan.saltzman@globe.com.