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We’re shocked when we hear that another young person has died from sudden cardiac arrest after collapsing while involved in a sporting event. Weren’t these kids the picture of perfect health? It would seem so, yet each week sudden cardiac death claims the lives of more than 60 young adults in the U.S.
In the early 1990s, cardiologist Joseph Marek, MD and his partners at what was then Midwest Heart Specialists wanted to help save lives through early detection of heart problems. They started ultrasound heart screenings at the local high schools, but the cumbersome nature of the equipment made wide-scale screening impractical.
Dr. Marek, who practices with Advocate Medical Group and is on the medical staffs at Edward and Elmhurst Hospitals, pored over the research on youth screenings, determined to find a better way to help prevent these tragedies.
In 2006, he launched Young Hearts 4 Life (YH4L), an electrocardiogram (EKG)-based screening program similar to programs that were proven effective in Europe.
Dr. Marek says most of the problems that cause the sudden cardiac arrest in young adults are related to heart rhythm and are detectable by EKG, a non-invasive test of the heart’s electrical activity.
The portability of the equipment and ease of training parent volunteers to administer the tests made a broader scale screening program possible. The YH4L screenings are now open to any students at the screening site, not just sports team members.
“All these kids work out, take P.E. or play pick-up games,” says Dr. Marek. “We don’t define ‘athlete’ in the narrow sense.”
To date, YH4L has screened more than 160,000 students in more than 50 suburban Chicago high schools. About 2 percent of these young people are referred for further testing. Edward and Elmhurst Hospitals, part of Edward-Elmhurst Health, are financial sponsors of YH4L. Tens of thousands of students have been screened over the years in their respective service areas.
Chris Storm was a 15-year-old member of the Waubonsie Valley High School track team in March 2011 when he went for a YH4L screening. After the EKG he texted his mother, Rosemary Storm: “Mom, there is something wrong, they’re sending me for more testing.”
Neither Chris nor his mother expected this. She said, “Just two days before the testing he had placed in the district’s 400-meter indoor track meet.”
Additional tests showed that Chris has a hereditary condition called hypertrophic cardiomyopathy, which involves a thickening of the heart muscle. If it progresses, it can cause an obstruction that cuts off blood flow. Some other causes of sudden cardiac death in young people are coronary artery abnormalities and an inherited heart rhythm disorder called Long QT Syndrome.
Receiving his diagnosis was tough enough for Chris, but it came with another challenge – he had to drop competitive sports.
“He was upset. When you take away something a kid loves, it’s hard,” says Rosemary.
In June 2011, Chris was implanted with a combination defibrillator/pacemaker called an ICD (implantable cardioverter defibrillator). Should his condition worsen and cause a cardiac arrest, the ICD would shock his heart back to a normal rhythm.
Dr. Marek says Chris’ prognosis is very good now that his condition is being managed.
“Chris is an incredible young man,” says Dr. Marek. “He’s been rechanneling his energy into helping other people, including going to schools to encourage students to get screened.”
Chris is now a 21-year-old junior at Indiana State University where he’s pursuing a nursing degree. He wants to focus on pediatric cardiology and ultimately become a nurse practitioner, goals and milestones his mother is grateful he can set because of the YH4L screening.
“We believe it saved his life,” she says. “We think that had it not been found, there could’ve been some severe consequences, possibly death. We may not have been able to watch him grow and excel and do well and do what he wants to do in life.”
Dr. Marek, together with his three-person YH4L staff and a base of volunteers, are working on new goals too, including starting bereavement groups for people who have lost a young adult child.
They also have been getting students involved in volunteer and program leadership roles so they can motivate other young people to get screened. The Student Advisory Board, now in its third year, is already making its mark. The group staged a 5K run and walk in April 2017 that raised $30,000.
Learn more about YH4L and cardiac care at Edward-Elmhurst Health.
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