Rare Heart Surgery Helps Control Life-Threatening Arrhythmia in Young Boy

The signs were anything but obvious. Jaymes’ mother Christine Morra had fainting episodes, and his older sister Julia Morra had seizures, but no one suspected genetic heart disease until Jaymes’ older brother Joey Morra passed out during gym class at school. Doctors noticed something abnormal on Joey’s echocardiogram (an ultrasound of the heart). More testing showed catecholaminergic polymorphic ventricular tachycardia (CPVT). “Joey started the cascade,” Christine Morra said. “Then Julia was tested, and then myself and Jaymes. It rooted back to a spontaneous mutation in me.”

Julia, Christina, and Jaymes Morra

CPVT has a reputation for being deadly, with fatality rates as high as 50% before the age of 30 without proper treatment.¹ The condition is triggered when adrenaline floods the heart during physical activity or emotional distress. CPVT can lie dormant for years or even decades and cause virtually no symptoms until it’s too late. “The hardest pill to swallow was Jaymes being diagnosed when he was three years old,” Christine Morra said.

When the Morra family moved from Connecticut to North Carolina in 2020, Duke Health’s robust Pediatric Cardiovascular Genetics Program, which is part of a larger pediatric and adult cardiovascular genetics collaboration, made it the obvious choice for their care. “Our doctors knew exactly who we should see at Duke, so we were able to get set up there rather quickly,” Christine Morra said. The Morra kids were seen by Duke Children’s Director of Cardiovascular Genetics Andrew Landstrom, MD, a pediatric cardiologist and electrophysiologist who specializes in treating rare genetic or “heritable” pediatric arrhythmias like CPVT.

"CPVT is the most life-threatening arrhythmia syndrome that's known," Dr. Landstrom said. "Even with appropriate therapies, sudden cardiac arrests can still happen. A specialty center like ours offers all the different options to treat this disease, plus we know the correct time to start therapies, we know what therapies to use, and we use personalized medication strategies that other cardiologists might not."

In 2021, Duke doctors inserted a cardiac monitor to continuously record Jaymes' heart rhythm. It transmits the data to his Duke care team so they can quickly identify suspicious activity, notify the family, and adjust his treatment plan accordingly.

In early 2023, Jaymes had a breakthrough arrhythmia during a taekwondo test. He had been visibly nervous, bouncing his legs up and down. When Christine Morra got the call from Duke, she knew exactly when it happened. "Rather than increase or change Jaymes' meds, we bumped up the date for his surgery because we knew adrenaline had caused the episode."

Sympathetic denervation is a minimally invasive surgery that reduces dangerous breakthrough arrhythmias by removing part of the left sympathetic nerve, which releases adrenaline into the heart. Less adrenaline to the heart means fewer arrhythmia episodes. Duke pediatric surgeon Ryan Antiel, MD, is one of only a handful of pediatric-specialized surgeons in the nation who routinely performs sympathetic denervation surgery in children with these high-risk arrhythmias.

"It was nice to have Jaymes undergo surgery close to home and to have Dr. Landstrom with us," Christine Morra said. "The surgery has given us some comfort in knowing that adrenaline doesn't get to the heart as much as before."

Since Jaymes' surgery, he has had a few minor arrhythmia episodes, but they haven't stopped him from playing baseball and volleyball, just like other kids his age. Dr. Landstrom stressed how important it is for individuals and families with CPVT to seek care at a center that is equipped to treat these rare heart conditions.

"If you're a family with CPVT, you can live a normal life", he said. "Our goal is to not only alleviate that sudden death risk, but to get you back to doing what you love."