New parents Charlotte Jordan and Eric Hoffman were packing to leave NYU Langone’s Tisch Hospital with their newborn son, Theo, when a nurse entered the room. The baby’s breathing sounded raspy—would they mind if the medical team did some testing? Instead of heading home as planned, the family waited for news.

Testing led to a serious diagnosis: baby Theo had a heart defect. He would need lifesaving heart surgery to repair a faulty connection that was depriving his body of oxygen-rich blood. His surgery took place steps away at Hassenfeld Children’s Hospital—34th Street.

After Theo recovered, the family moved from Brooklyn to Riverhead, Long Island, and in 2021 had another baby on the way. Would this child be born with a similar issue? People who have a child with a heart defect, the most common type of birth defect, have a higher than 3 percent chance of having another child with a heart defect. As a precaution, Charlotte received extensive prenatal testing through the Pediatric Congenital Heart Program, part of Hassenfeld Children’s Hospital at NYU Langone. This included a fetal echocardiogram, an imaging test performed at 18 weeks of pregnancy that can detect heart abnormalities in the womb.

Again, the couple received devastating news. Finley had multiple heart defects, including a very large hole in his heart, one that likely would not close on its own.

“It was the most difficult day in my pregnancy journey,” Charlotte said. “I knew we faced more surgery, and this time the diagnosis was even more severe.”

When children in the same family develop congenital heart defects, their conditions are typically similar. Not so with these brothers. Each had his own unique issues. “Theo’s condition, while uncommon, presented in a classic way, with signs of respiratory distress and low oxygen levels,” said Gillian L. Henry, MD, the boys’ pediatric cardiologist. “Finley, by contrast, had the extremes of everything.”

Little Hearts, Big Fixes

Charlotte’s first pregnancy was uneventful. She had no known risk factors, no red flags to indicate that her baby had a congenital heart defect. Two days after his birth, the medical team pinpointed the cause of his raspy breathing: total anomalous pulmonary venous return, or TAPVR. The condition affects about 1 in 10,000 births.

Fortunately, the care Theo needed was right there at Hassenfeld Children’s Hospital, where our Pediatric Congenital Heart Program has the best risk-adjusted survival rate of any hospital in New York State. Our outcomes reflect surgical excellence and patient safety, as well as success in caring for children with severe forms of heart disease. “We were coincidentally at one of the best places, probably anywhere in the world, for a person with this particular condition,” Eric observed.

To make an appointment, visit the Pediatric Congenital Heart Program.

Pediatric cardiologist Achiau Ludomirsky, MD, explained the diagnosis to the new parents, even sketching Theo’s heart alongside what a normal heart should look like. Normally, blood moves from the heart’s right ventricle to the lungs, where it picks up oxygen. The pulmonary veins then move that oxygen-rich blood from the lungs to the left atrium, which pumps it out to the rest of the body. In Theo’s case, his pulmonary veins connected to the wrong side of the heart. He would need surgery to restore normal blood flow and get that oxygenated blood pumped out to the rest of his body.

On the day of surgery, Theo was placed on a heart–lung machine that kept his blood oxygenated while his heart was stopped. Congenital heart surgeon T.K. Susheel Kumar, MD, began repairing a heart no bigger than a walnut. He used a piece of Theo’s pericardium, the covering around the heart, to reroute the pulmonary veins to the left side of the heart. He also repaired a hole in the wall separating the upper chambers of the heart.

New Baby, New Diagnosis

Just 14 months later, Theo’s little brother Finley entered the world with his own complicated set of heart issues. Finley had Shone’s complex, which means most of the left-sided structures of the heart were smallish, explained Dr. Kumar. A portion of the baby’s aorta, which is the artery that carries oxygen-rich blood to the rest of the body, was narrower than it should be. He also had a large hole in his heart, known as a ventricular septal defect, or VSD, among other anomalies.

As soon as Finley was born, the medical team whisked him to the hospital’s Congenital Cardiovascular Care Unit for care and monitoring. His first surgery took place about 10 days later. During the procedure, Finley’s heart and blood circulation were stopped, allowing Dr. Kumar to open the entire aorta and restore it to its normal size using donated tissue.

Repairing the hole in Finley’s heart during the same surgery would have been too risky. “It was a very big defect,” said Dr. Kumar. “The infant’s heart may not have been able to withstand such a long operation.” Instead, he placed a temporary band around the pulmonary artery to reduce the flow of blood to the lungs. During a second surgery in February 2023, when Finley was 21 months old, Dr. Kumar removed the band and closed the hole with a synthetic patch.

A Team Effort

Theo, age 3, and Finley, who will be 2 in September, are now happy and thriving thanks to the care they received from a multidisciplinary team that includes pediatric cardiologists and cardiac surgeons, imaging experts, anesthesiologists, perfusionists, and nurse practitioners.

Because of his complex condition, Finley required additional services, including home monitoring to keep tabs on his weight, oxygen level, and heart rate. At 4 months of age, he had a feeding tube, called a gastrostomy tube, inserted in his abdomen to help him gain weight. He now gets most of his nutrition by mouth, although he still uses the feeding tube overnight for extra calories.

Finley continues to see Dr. Henry every two to three weeks. Despite many obstacles, including hospitalizations for respiratory syncytial virus and COVID-19, the toddler is climbing and racing around everywhere to keep up with his older brother. Theo isn’t expected to need any additional surgery.

“In the end, we have two kids with normal, healthy hearts who will lead normal, healthy lives, which is incredible,” said Eric, whose sons like to run around in superhero capes.

Three major surgeries later, and on the other side of the COVID pandemic, the family can finally relax a little. They’re planning their first trip to England this summer so the boys can meet their extended family. “Having the right hospital and medical team partnering with us really made all the difference,” Charlotte added. “What they can do is incredible.”

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