When two prominent athletes, Dumar Hamlin and Bronnie James, suffered an unexpected and life-threatening sudden cardiac event, attention was raised to heart health among young people. Even though they both survived, it doesn’t always go well. This fall, a new effort to save lives will begin. Some of these efforts are being promoted by parents who have lost their children to sudden cardiac death.
”I remember it like it was yesterday,” Susan Canning said before taking a deep breath.
“I I got a call that my parents never wanted to receive. ”
Monday, July 11, 2011. Nineteen-year-old Kevin Major was on a flatboat on a lake with his friends. A good swimmer and a trained lifeguard, the Major dismounted to grab the anchor.
“My friends said he came up, looked weird, didn’t say anything, just went back down and that was it,” Canning said.
“He was a great athlete. He was in great shape,” she added.
It took a full three months to get the autopsy report. Major had hypertrophic cardiomyopathy. This is a hereditary hereditary disease that often goes undetected.
“In fact, his left ventricle was three times the size of a normal 19-year-old, and that’s what put us down the road to sudden cardiac arrest.”
Boston Children’s Hospital cardiologist Mark Alexander and his team see hundreds of patients with heart concerns and conditions.
“If you have scary symptoms, start with an ECG, because that way you can triage things,” says Alexander.
These days, getting a diagnosis doesn’t usually mean you’re done with athletics.
“If kids want to play sports, it’s very important to get them to do sports,” says Alexander.
“There’s been a big shift in the last decade. We’re getting a better picture of who’s at high risk and who’s at low risk.”
This fall, pediatricians at Children’s are rolling out a new questionnaire for children that focuses on family history and symptoms, aimed at identifying potential heart risks.
Critical to the fight against sudden cardiac death is an AED (automated external defibrillator).
“You press a button to turn it on and it tells you exactly what you want it to do,” Alexander said.
“We are one of seven states in the country that require all school buildings to have automated external defibrillators. installation is mandatory, which is a big win,” explained Canning.
But 42 states in the US have mandated CPR training in high schools, and Massachusetts is not among them, she added. Canning is working on a bill to change that. She also founded the Kebbs Foundation, which provides free heart testing and her AED.
“It’s incredible how public access to fibrillation has changed the world,” said Alexander.
This is technology that has been proven to save lives, like Megan Smith did when she was a kid.
“When I was eight, I was at the airport,” she said. “I told her mother that I was really tired, and after a few seconds I almost collapsed.”
”Someone saved her at the airport. What more can I say? ‘ said Alexander.
Ms. Canning said she found her calling after the loss.
“I recognize that education and enlightenment have power and can actually save children and save families from the grief we all have,” she said.
New Questions for Pediatric Cardiac Screening
Below is a list of new screening questions. It will begin at six pediatric clinics around Massachusetts. After a short trial period, the team makes the necessary adjustments to wording the questions and building an electronic medical record that supports patient questionnaires and facilitates referral and follow-up to pediatricians. He expects to expand this critical cardiac screening across his BCH network of 80 pediatric clinics across the federal state by the end of the year.
1. The patient relates to anyone with hereditary or hereditary heart disease (see example below) or who required a pacemaker or implantable cardioverter-defibrillator before age 50 Yes/No
- If yes, what relationship did this person have with the patient? (siblings, parents, aunts, uncles or grandparents), (other relatives), (unknown)
2. Has anyone in the patient’s family died of heart disease before the age of 50 or experienced a sudden and unexpected death? Including accidental car accidents, SIDS, etc.Yes, No
- If yes, what relationship did this person have with the patient? (siblings, parents, aunts, uncles or grandparents), (other relatives), (unknown)
3. Has the patient fainted or passed out suddenly and without warning during exercise or in response to loud noises such as doorbells, alarms, or phone rings? Yes No
Examples of hereditary and hereditary heart diseases 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 heart disease. Polymorphic ventricular tachycardia (CPVT).
This screening will begin first at the following clinics that are part of the Children’s Hospital Pediatrician Organization:
- Bridgewater Pediatrics
- Hyde Park Pediatrics
- Pediatric Medical Associate
- Pediatrics and Adolescent Medicine
- Northampton Area Pediatrics
- Briar Patch Pediatrics
The story of the KEVS Foundation and why the dragonfly is a symbol
Kevin Major’s mother, Susan Canning, shared this powerful story with us.
“Our symbol for Kevin is a dragonfly. It was like drawing three circles around, and the baby flew off, and when it started, the state police came and said, “I’ve found your son.”
Learn more about the Kebbs Foundation here.