BETHEL, Conn. — A fairly simple test could have helped to prevent the death two years ago of Bethel teenager Michael Shanley.
His mother, Maria Shanley, is working with Wimbledon Health Partners of Florida to raise awareness of sudden cardiac arrest. It is the top medical cause of death in young athletes, according to the American Heart Association, with one death every three days.
- Who : Maria Shanley, Bethel
- What : Raising awareness for sudden cardiac arrest, which claimed her 17-year-old son, Michael, in 2015
- Did you know? Tests that take about 90 minutes can determine if a child is at risk of sudden cardiac arrest
Michael, 17, died on May 11, 2015, at his home of sudden cardiac arrest. Maria has since learned that Wimbledon Health Partners and other businesses provide noninvasive testing that could have helped prevent her son’s death.
Wimbledon Health Partners’ testing program includes an EKG, echocardiogram and vascular ultrasound to identify conditions such as blood clots and asymptomatic cardiac abnormalities that can lead to sudden cardiac death. The combined time to take the tests is about 90 minutes.
“Why is heart testing not part of routine checkups?” Maria said. “Women get preventative mammograms. People get routine colonoscopies starting at 50. Why don’t our kids get preventative heart testing at the time they need it, when they are in high school?”
Michael, the youngest of six children, enjoyed typical teenage activities. He was active in Boy Scouts, and played lacrosse and football in middle school and high school. He was also a member of the school’s highly decorated Navy Junior Reserve Officer Training Corps as a freshman and worked part-time at a local restaurant.
He worked at the restaurant on Mother's Day, the day before he died.
His life was cut short due to hypertrophic cardiomyopathy and mitral valve prolapse, heart conditions that can be detected through cardiac testing.
Maria said in retrospect, there were some signs Mike had some cardiovascular issues. She noticed a few hours after his birth that he was breathing funny. In T-ball, Michael preferred to stay put on the field rather than running the bases when it came time to bat. He frequently stopped on Boy Scout hikes to catch his breath.
Yet he passed his yearly school physicals, and he pushed himself to become faster, stronger, more fit. Neither he nor his family suspected his heart was not functioning properly.
““Looking back, there were signs that something wasn’t quite right with Mike, but not for a second did we associate it with a heart problem that could take his life,’’ Maria said.
Hypertrophic cardiomyopathy causes the heart walls to thicken and in Mike's case, his left ventricle was 90 percent thickened above normal, Maria said.
"Mike's heart was working so hard to keep him alive and he had no idea that his heart wasn't normal. It was so ineffective. He only complained of being tired and I just thought it was normal for the active teenager life he was keeping,'' Maria said.
The cause of Michael's death is not uncommon. Cynda Perun, director of marketing for Wimbledon, said deaths due to cardiac arrest are underreported.
“It’s well-known in the industry that a lot of times deaths due to cardiac arrest are reported as natural causes,’’ she said. “A lot of times, when an an athlete collapses, there is never a follow-up on a heart condition. Families don’t necessarily want to make the information public.”
Wimbledon offers its testing program to high schools, colleges and other facilities. Perun said it’s essential that both the EKG and echocardiogram tests are completed. The EKGs look for electrical heart conditions that can cause sudden cardiac arrest. Echocardiograms are ultrasounds that create pictures of a heart’s chambers, valves, walls and blood vessels to help physicians identify abnormalities that can cause sudden cardiac arrest. Most insurance companies will also cover costs associated with the tests.
“We’ll offer a hardship waiver for people who qualify in order to eliminate any balance due,’’ Perun said. “Most of the time, parents are leery about what it may cost instead of calling to verify. A lot of parents feel it won’t happen to their child. A lot of times the athletes are completely healthy and have no symptoms.”
Texas has a bill on the table to mandate testing for high school athletes -- only an EKG is be required -- and some others are considering it, Perun said.
“A lot of states mandate CPR training and AEDs,’’ she added. “That’s reactive. We need preventative testing so that we can pick up these heart conditions. Forty percent of young athletes suffer cardiac arrest outside of physical activity, like in Mike’s case, so AEDs at a sporting event won’t help in these situations.”
The key is raising awareness. And that’s where Maria Shanley feels can make an impact.She is part of a movement of parents and organizations speaking out about the need for heart testing in schools. She wants to save others from the grief she and her family have experienced.
“Why am I doing this? Life is why. Mike is why,” she said.