Max Gettinger is a typical toddler. Chubby cheeks, endlessly curious, always on the go. But his heart is unique. Unique in spirit, yes, but also unique in medical history.
Max was born with a cardiac defect so rare that the condition has no name. Only six cases have been documented worldwide since the first was reported in 1981. Max’s mother, Ellen Gettinger, 35, describes her pregnancy in 2019 as uneventful until a routine ultrasound during her third trimester detected an abnormal heart. She was referred to NYU Langone Health’s Fetal Heart Disease Program and maternal–fetal medicine service for an evaluation.
Tests confirmed the troubling news—a tunnel-shaped hole, or fistula, between the left and right chambers of Max’s heart. The breach caused blood to recirculate, enlarging his heart and depriving other organs of oxygen. Without an urgent intervention at birth, the condition would cause heart failure. Ellen and her husband, Jonathan, were devastated by the news.
Congenital heart conditions, the most common type of birth defect, affect about 1 percent of the babies born annually in the United States—some 40,000 infants. Doctors at the Pediatric Congenital Heart Program, part of Hassenfeld Children’s Hospital at NYU Langone, treat about 250 patients each year. Hassenfeld Children’s Hospital has the highest risk-adjusted survival rate of any hospital in New York State for pediatric patients who require congenital heart surgery, but Max’s case was unusually complex. He was also diagnosed with a cardiac condition known as Wolff-Parkinson-White syndrome, an arrhythmia which causes a rapid heartbeat. “Max had a lethal combination of defects,” explains Frank Cecchin, MD, the Andrall E. Pearson Professor of Pediatric Cardiology at NYU Grossman School of Medicine and director of the Division of Pediatric Cardiology.
The Gettingers needed an urgent postnatal medical plan to save Max’s life. About 20 members of the Pediatric Congenital Heart Program team convened to strategize ways to close the hole in Max’s heart once he was born. Pediatric cardiac surgeons determined that sealing it surgically would be too risky because the defect was located on the back wall of the heart, making it difficult to access if postoperative bleeding occurred.
Interventional cardiologist Michael Argilla, MD, director of the Pediatric Catheterization Laboratory, suggested closing the hole with a vascular plug made of a pliable nickel–titanium alloy delivered through a catheter. The only catch: it was designed for adults. The procedure would be extremely delicate and unpredictable, the team agreed, but without it, Max would die.
Ellen began 30 hours of labor on September 25, 2019, and Max made his debut the following evening. She was able to hold him for just a few minutes before he was whisked away to Hassenfeld Children’s Hospital’s Congenital Cardiovascular Care Unit, where Max was later placed on a ventilator. With Max in heart failure, the device enabled his heart and lungs to meet his body’s need for oxygen and nutrients.
After 12 days, when Max weighed just 6 pounds, Dr. Argilla and his partner, pediatric interventional cardiologist Sunil Saharan, MD, began the process of threading a tiny catheter into his heart through veins and arteries no wider than a strand of spaghetti. Just in case the plug didn’t stay in place and emergency surgery became necessary, a pediatric cardiac surgeon was on standby.
For the next seven hours, without a break, Dr. Argilla and Dr. Saharan tried multiple pathways to get to the fistula, using the baby’s groin, navel, and femoral artery as entry points and trying different approaches to seal the hole. For visualization, they relied on real-time X-rays with a contrast dye injected to highlight blood vessels. “We needed four hands working with all these catheters,” explains Dr. Argilla. “You can’t be aggressive and fast inside a heart the size of a plum.”
Each step presented daunting challenges. The pathway in Max’s heart had sharp turns, making it difficult to negotiate. The first mesh plug, designed for adults, didn’t fit. Just as the doctors were starting to lose hope after hours of painstaking effort, they tried one more time, using a different wire through the umbilical vein to deploy a larger plug. “We got the plug in position in 10 minutes,” recalls Dr. Saharan, “and we could tell that it fit.” The doctors felt a wave of relief as Max’s heart function improved immediately. “I’m a parent as well,” says Dr. Argilla, “so it chokes me up to think of a parent putting their child’s life in someone else’s hands. Ellen and Jonathan are phenomenal people.”
For Ellen, the intervention’s success was “the best news we ever received.” At last, they held their baby, and within days, Max was weaned off the ventilator, and then most medications. Tissue began growing over the device, securing it in place. After learning how to give a daily injection into Max’s thigh to treat his heart’s electrical problem, the Gettingers took him home to their apartment in Astoria, Queens.
Max showed no signs of an irregular heart rate over the following months, as the pandemic descended upon the world. That fall, after celebrating his first birthday, Max returned to Hassenfeld Children’s Hospital, and Dr. Cecchin normalized his heart rate by ablating cardiac tissue with a heating device to create tiny scars that block abnormal electrical signals. With both critical heart defects resolved, Max buzzed with energy.
Now a high-spirited 2-year-old as stubborn as any other, Max ran nonstop around the hospital courtyard recently as Dr. Argilla and Dr. Saharan looked on with bemused awe. “He’s a unique baby, with a unique heart,” says Dr. Saharan, clinical assistant professor of pediatrics. “He was in the right place at the right time. It doesn’t get any better than that.”