The Mangans quickly loaded Jack and his 1-year-old brother, Declan, into their SUV and headed to the pediatric hospital, with Amy Mangan's parents following behind. Another car arrived, and at about 10 p.m. — about 11 hours after his mother got the call — doctors began operating on Jack.
Over the course of four and a half hours, surgeons painstakingly replaced two key parts of Jack's heart and circulatory system – the aortic valve and three-quarters of an inch of the aorta, the body's main artery – with living tissue taken from a donor.
This was the first case of a so-called partial heart transplant. A potentially life-saving, cutting-edge surgery has been performed in New England, primarily targeting defective valves. For years, doctors have used mechanical valves or valves from cadavers, cows, or pigs to replace diseased valves in children. Jack's surgery has clear advantages over those procedures: because he received living human tissue, his new Because the valve grows with the rest of the body, doctors hope it will eliminate the need for additional, risky surgery to insert a larger valve.
The world's first partial heart transplant This happened to a 17-day-old boy at Duke Health in North Carolina in the spring of 2022.Since then, at least 15 children in the United States have had partial heart transplants, including nine at Duke, said Dr. Joseph Turek, chief of pediatric cardiac surgery at Duke, who developed the procedure.
Seven weeks after Jack's transplant, the energetic blond kid appears to have made a full recovery. During a Zoom call in late June, he was gleefully hoisting several of his 200 monster trucks, including a fire truck with oversized wheels, from his home in Freehold, New Jersey.
“I want to be a firefighter,” he said.
Jack lifted his red New York Fire Department T-shirt to proudly reveal the six-inch scar that ran across his chest. He repeated a mantra his parents taught him before his transplant: “I am brave. I am strong. I am amazing.”
This was Jack's sixth heart surgery at Children's Hospital, and his parents are optimistic that it will be his last, as the new valve, which opens and closes like a door to allow blood to flow through his aorta, is working well. Jack is in better health than before the surgery and has no limitations on his activities.
“The prognosis is good,” dental hygienist Amy Mangan said with a smile. “There's nothing holding him back.”
In some ways, the path to introducing this revolutionary procedure into pediatrics began with a chance encounter in a college dorm in Evanston, Illinois, more than 30 years ago.
Dr. Sitaram Emani, the cardiac surgeon who led the team that operated on Jack, met with Turek. The two, both currently enrolled at Duke University, were friends as freshmen living down the same hall at Northwestern University, and later became residents at Duke, serving in residency at the same time and staying in touch.
Emani said he and Turek had spoken at least a dozen times after Turek performed his first partial heart transplant, and both were excited about the possibility of doing the procedure at Children's Hospital. Children's Hospital had been considering doing partial heart transplants for years, and after Turek's success, they decided to give it a try, Emani said.
“We didn't want to do a procedure that we thought wouldn't have a good outcome,” Emani said, “and Duke's track record gave us the courage to really take a chance.”
The procedure is ideal for pediatric patients who have defective valves but healthy heart muscle. For patients with heart failure, a full transplant is appropriate. The pediatric department performs 15 to 20 full transplants a year, but Emani says it would be “reckless” to do so if the only problem was the valve. Patients who receive full transplants must take anti-rejection drugs for the rest of their lives, which can cause serious side effects. Patients who receive partial transplants also take these drugs, but doctors hope to taper the dosage over time.
Jack's heart problems were discovered during an echocardiogram performed when Amy Mangan was 22 weeks pregnant. Doctors diagnosed him with aortic stenosis, a congenital heart defect that occurs when the fetus's aortic valve doesn't form properly, preventing oxygen-rich blood from flowing out of the heart. The narrowing puts strain on the left ventricle (the heart's lower left pumping chamber) and can lead to more serious conditions. This is called hypoplastic left heart syndrome.
Doctors referred Mangan to Children's Hospital, where they used inflated balloons to open up the fetal aortic valve at 23 and 28 weeks of the pregnancy, said Dr. Matan Seton, a pediatric cardiologist at Children's Hospital who has overseen Jack's care. The baby was born in February 2020 and underwent additional surgeries at 11 days and 10 months old.
Dr. Seton moved to Columbia University Irving Medical Center in New York City soon after Jack's birth and continued to work on Jack's case. Jack played soccer and loved to run, and generally seemed healthy, but Dr. Seton became concerned that a defective valve might be preventing the left ventricle from relaxing enough to pump blood into the aorta.
“Not really, but [Jack’s condition] “While it was immediately life-threatening, we were concerned about the long-term health of his left ventricle and what that might mean for him as an adult,” Dr. Seton said.
After the first partial transplant was performed at Duke University in 2023, surgeons at Columbia University performed similar procedures on two other children. When Seton returned to Boston Children's Hospital in October of last year, he recommended Jack to Emani as a candidate for the new procedure.
Jack was placed on the waiting list for an aortic valve transplant in March. New England Donor ServicesChildren's contacted Organ Donor Center, a nonprofit organization that coordinates organ donations in the region, in May after the donor was declared brain dead.
Alex Glaser, Representative A representative for the group said he could not reveal anything about the donors due to confidentiality agreements, but said partial transplants were a major innovation.
“Current grafts do not grow with the child, necessitating additional surgeries, but this technology solves a problem for pediatric heart patients,” she said.
An hour after receiving the call to come to Boston at 11:30 a.m., the Mangans left their home in Freehold and set off, Christopher Mangan at the wheel.
“Of course I got stuck in traffic.” “They were trying to get him there safely,” said Jack's father, who works for a Wall Street brokerage. Amy Mangan's parents tagged along to help look after Jack's younger brother, Declan, during the operation.
Amy Mangan said she prayed for Jack, his doctors and the donor's family throughout the drive, and repeatedly told Jack he couldn't eat tortilla chips, even though he protested, because he couldn't eat anything before surgery.
The family arrived in Boston around 6pm, and Dr. Emani conducted two surgeries over the course of 12 hours. The first involved removing the deceased donor's heart, which had been kept on ice in a refrigerator, and then transplanting Jack's aortic valve and part of an artery. Dr. Emani said a total of 16 medical staff participated in both surgeries, with the second surgery finishing around 3am.
Emani knew the transplant was successful, he said. When the clamp was removed from Jack's aorta, the crooked artery was distended with blood easily flowing out of the left ventricle and preventing blood from returning to the heart.
It was a “lightbulb moment,” Emani says.
Jack was sedated and had a breathing tube down his throat after the operation, so he was asleep for over a day, only waking up after medical staff removed the tube.
He immediately told his parents that he wanted something he had asked for on the drive to Boston: tortilla chips.
The medical staff and his mother laughed.
“Well,” Amy Mangan said, “Jack's back.”
Jack now goes to the pediatrician every 2 weeks for follow-up checks and returned last week doing well.
“We felt so privileged to have this level of care,” his mother said, “and knew Jack was getting the right care.”
Jonathan Saltzman can be contacted at [email protected].
