When two high-profile athletes, Damar Hamlin and Bronny James, suffered unexpected, life-threatening sudden cardiac events it called attention to heart health in younger people. And while both survived, it doesn’t always work out that way.
This fall there are new initiatives to help save lives. Some of those efforts are driving by parents who have lost their own children to sudden cardiac death.
“I can remember it like it was yesterday,” Susan Canning said before taking a deep breath. “I received the call that a parent never, ever wants to receive.”
Monday, July 11, 2011. Nineteen-year-old Kevin Major was on a pontoon boat at the lake with friends. A strong swimmer and trained lifeguard, Major went down to grab the anchor.
“According to his friends he came up, had a funny look, didn’t say anything, and then just went back down. And then that was it,” Canning said. “He was a stellar athlete. He was in great shape,” she added.
It took a full three months to get an autopsy report. Major had hypertrophic cardiomyopathy – an inherited genetic disease that often goes undetected.
“His left ventricle was, in fact, three times the size of a normal 19-year-old. And that’s what led us down to the road of sudden cardiac arrest.”
Cardiologist Mark Alexander and his team at Boston Children’s Hospital see hundreds of patients with heart concerns and conditions. “If you have a frightening symptom, then start with an EKG, because that will triage things,” Alexander said.
These days, a diagnosis usually doesn’t mean the end of athletics. “It’s really important to let your kid play sports if that’s what they like to do,” Alexander said. “That’s been a real shift in the last decade. we’ve become more refined on who’s at high risk, who’s at lower risk.”
This fall, pediatricians affiliated with Children’s are rolling out a new questionnaire for kids focused on family history and symptoms, aimed at identifying potential heart risk.
Critical to the fight against sudden cardiac death: AEDs, or automated external defibrillators. “You push a button and turn it on and it will tell you exactly what you want to do,” Alexander said.
“We are one of seven states in this country that require automatic external defibrillators in every school building. They are also required to be at school-sponsored events. That’s a great win,” Canning explained.
However, she adds that 42 states in the country require CPR training in high school – and Massachusetts is not one of them. Canning is working on a bill that would change that. She also set up the Kevs Foundation to offer free cardiac testing and AEDs.
“It’s unbelievable how much public access to fibrillation has changed the world,” Alexander said. It’s technology that’s proven to save lives, like in the case of Meghan Smith, when she was a child. “When I was 8, I was in the airport,” she said. “I apparently told my mom I was feeling really tired. And then a few seconds later, I, like completely just went down.” “Somebody in the airport saved her. What more, what can you say?” Alexander said.
Canning said after her loss, she found a mission. “I realize education and awareness was powerful and in fact could actually save a child and save a family from the grief that we carry,” she said.
The new pediatric cardiac screening questionnaire will be launched at six pediatric practices around Massachusetts and is aimed at identifying potential heart risk. The hope is to expand this screening to the entire BCH network of 80 pediatric practices across the Commonwealth before the end of the year.
The KEVS Foundation, set up by Susan Canning, uses the dragonfly as its symbol because of a significant experience she had after the death of her son, Kevin Major. A dragonfly circled her before she was informed of the recovery of her son’s body. The foundation offers free cardiac testing and AEDs.