The scream that Jonathan Negron heard on a commercial airline flight five years ago ultimately signaled his pathway to a career with NYU Langone Health, one inspired by the quick diagnosis of his daughter’s exceedingly rare condition.

It all started on a trip to Florida and Disney World, when his wife, Jennifer, elbowed the FDNY paramedic awake after hearing that scream at the front of the cabin. “Go check it out,” she said. Jonathan, who was also a U.S. Navy corpsman veteran with three tours in Iraq, made his way there, where he found a passenger not breathing. A doctor, a flight attendant, and a Nassau County police officer joined him, and together they performed CPR and used a defibrillator to restore the passenger’s pulse.

Then, suddenly, with adrenaline still coursing through his veins, Jonathan again heard screams, this time from the back of the plane. Kaitlyn, his 8-year-old daughter, was having a seizure. He ran back to his family, where a nurse in the next row had already jumped into action to help his wife with his daughter.

The flight returned to JFK, and an ambulance rushed Kaitlyn to the closest hospital. There, doctors ran neurological tests and found nothing, suggesting she might grow out of it.

But a year later, Kaitlyn had three seizures in one day. This time, the East Meadow family went to NYU Langone Hospital—Long Island, where the emergency team took a different approach, connecting Kaitlyn to a heart monitor. “Every 30 or 40 seconds, her heart rate slowed for about 10 seconds,” Jonathan said. “The bradycardic alarm goes off. Then it returns to normal as if nothing happened.”

This led to an immediate cardiology consult and a monitoring vest for Kaitlyn, which detected an unusual rhythm. A further referral to pediatric cardiology specialists, including Frank Cecchin, MD, at Hassenfeld Children’s Hospital at NYU Langone discovered a rare arrhythmia called paroxysmal heart block that can mimic epileptic seizures. This condition, which causes ventricular standstill, is so rare that Dr. Cecchin had seen only a handful of cases in three decades. “They called me ‘the unicorn,’” Kaitlyn remembered.

“In paroxysmal heart block, typically there is nothing wrong with the anatomy of the heart,” said Dr. Cecchin. “We don’t know why, but the brain signals for the heart to stop beating for a short period of time.”

Dr. Cecchin recommended implanting a pacemaker, a surgery that took about three hours to complete and was expected to return her heart to normal function for the foreseeable future.

“The speed of diagnosis—from initial heart monitoring to surgical solution—demonstrated how quickly specialized expertise could be mobilized for even the rarest conditions,” Jonathan said.

Kaitlyn approached the news of needing a pacemaker with understanding. “The doctor called it a magic box like a credit card,” she remembers. “I just thought, ‘If I’m going to feel better, that’s okay.’”

Now 13, Kaitlyn runs track, competes on a swim team, and plays field hockey and lacrosse. Recently, she outpaced her father in the Tunnel to Towers run. “She barely breathed heavy,” Jonathan says. “She was dragging me along, smiling the whole way.”

They made it to a Disney cruise the following year. “I was so happy we could finally go,” Kaitlyn says. “My whole family came with me. The AquaDuck water slide was my favorite part.”

For Jonathan, watching his daughter’s recovery shaped his next chapter. After retiring as an New York City Fire Department emergency medical services (EMS) captain, he joined NYU Langone’s EMS team as a paramedic. “The quality of care here is high,” he said. “When you’re the medic, you can put all your focus on taking care of patients. I think I appreciate it more now.”

Kaitlyn speaks to other kids facing medical challenges with the same directness she showed at 8: “You just have to keep going day by day. You have to know that you got this and that you’re strong. People are fighting for you—you’re not alone.”

The monitoring station in their home still transmits Kaitlyn’s heart data daily. Although her parents worried about her joining the lacrosse team, Dr. Cecchin overruled their concerns. “No problem,” he said. “Go ahead and do it.”

Media Inquiries

Arielle Sklar
Phone: 646-960-2696
Arielle.Sklar@NYULangone.org