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A push for heart health awareness in young people

This fall, pediatricians affiliated with Boston Children’s Hospital are rolling out a new questionnaire for kids focused on family history and symptoms, aimed at identifying potential heart risk

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.


Below you will find the list of the new screening questions.  At first it will launch at six pediatric practices around Massachusetts. After a brief pilot period, the team will make any necessary adjustments to question wording or the electronic health record build which supports the patient questionnaire and prompts the pediatrician for referrals and tracking. The hope is to expand this important cardiac screening to the entire BCH network of 80 pediatric practices across the Commonwealth before the end of the year

1. Is the patient related to anyone with an inherited or genetic heart disease (see examples below) or to anyone who needed a pacemaker or implantable defibrillator before 50 years old? Yes/No

  1. If yes, how was this person related to the patient? (Sibling, Parent, Aunt, Uncle or Grandparent), (Other relative), (Unsure) 

2. Has anyone in the patient’s family under the age of 50 died of heart problems or had a sudden, unexpected death? This would include unexplained drownings, unexpected car crashes in which the relative was driving, or SIDS. Yes/No

  1. If yes, how was this person related to the patient? (Sibling, Parent, Aunt, Uncle or Grandparent), (Other relative), (Unsure)

3.Has the patient ever fainted or passed out suddenly and without warning during exercise or in response to loud noises such as doorbells, alarms, or ringing telephones? Yes/No

Examples of inherited and genetic heart disease include: HCM or hypertrophic obstructive cardiomyopathy, Marfan syndrome, arrhythmogenic cardiomyopathy (ACM) or arrhythmogenic RV cardiomyopathy (ARVC), long QT syndrome (LQTS), short QT syndrome, Brugada syndrome (BrS), or catecholaminergic polymorphic ventricular tachycardia (CPVT).

The screening will launch first at the following practices that are a part of the Pediatrics Physicians’ Organization at Children’s Hospital

  • Bridgewater Pediatrics
  • Hyde Park Pediatrics
  • Pediatric Health Care Associates
  • Pediatrics and Adolescent Medicine
  • Northampton Area Pediatrics
  • Briarpatch Pediatrics


Kevin Major’s mom, Susan Canning shared this powerful story with us.

“Our symbol for Kevin is a dragonfly. Right before the state police came to say they recovered him, a rather large dragonfly came and made a circle. Then it had a baby dragonfly on her tail.  It did like three circles around us. And then the baby took off.  And as it took off, the state police came and said, “We’ve found your son.’”

Learn more about the Kevs Foundation here.

A push for heart health awareness in young people
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