You say goodnight to your child, you expect them to wake up. They are active, athletic, they feel and look good. Maybe you send your 16 year old to school only to get the call that they have collapsed during a routine one-mile run on the track. The problem is, more often than many of us realize, teens’ hearts stop working. I have met recently with several Seattle-area families living with the loss of their children, sudden, unexpected losses, and I am moved to share what one local group, the Nick of Time Foundation, named in honor of 16 year Mill Creek student Nick Varrenti is doing to screen teens for potential cardiac problems, catching abnormalities before being potentially fatal.
Sudden cardiac arrest kills kids who on the outside seem perfectly healthy – on average, every three days in this country a young athlete dies during training or play from SCA. Underlying causes can be congenital or they can be acquired, perhaps a structural problem or maybe electrical but most of the time parents don’t know have any inkling their child has a problem.
This week on Wednesday, December 5th, by signing up here, Mercer Island, Washington high school students have the opportunity for cardiac screenings in their school gymnasium thanks to NoTF. This is a volunteer-run effort with medical professionals and others giving a day of their time to perform comprehensive physicals, EKG’s and if necessary, echocardiograms on students. The $25 suggested donation is a “pay-it-forward” so that the Foundation can go to Meadowdale High School in Lynnwood, WA in February. This type of exam can normally run into the hundreds of dollars.
I interviewed NoTF Medical Director Dr. Jonathan Drezner recently for an upcoming ParentMap article on this topic and he described those pre-participation physicals we all scramble to obtain as an exercise that merely, “Builds out paperwork and shares liability risk without doing a good job looking under the hood.” Drezner says even a good, thorough physical will only catch 10%-20% of the conditions that may lead to SCA, an EKG will identify about 60%.
Drezner, a University of Washington family physician who specializes in sports medicine is also a team physician for the UW Huskies and Seattle Seahawks. We compared the public’s awareness of sudden cardiac arrest to concussions, which seem to be in the news daily. “The microscope is on concussions”, Drezner says. “They are part of everyday conversation, but the reality is that the number of deaths from head trauma are one-sixth of the number of deaths from heart injuries.”
Nick Varrenti loved football, and he was good. The Mill Creek, WA 16 year old played varsity and JV games one weekend before going to bed Sunday night. When his dad tried to wake him up for school Monday morning, Nick was already gone having suffered sudden cardiac arrest in his sleep.
Since her youngest son’s death in 2004, Darla Varrenti and NoTF her family’s foundation have worked tirelessly to prevent their tragedy from happening to others. Since 2010, the foundation volunteers have screened more than 9,000 students and more than 300 have needed some sort of medical follow up, at least 30 were in the high-risk category.
Dr. Jordan Prutkin, one of the volunteers at a recent NoTF screening explains that testing is usually best started around the onset of puberty. “Some of the structural changes may not develop or be seen until a child goes through puberty.”
The February cardiac screening at Meadowdale HS will be in honor of Matthew Truax, an active soccer-playing, snowboard-loving student who died this fall five days shy of his 17th birthday. Jerry and Melinda Truax had never heard of the myriad of medical terms that now haunts them after Matthew’s unexpected death. He had always seemed healthy and checked out well during physicals, but unbeknownst to his family, Matthew had an underlying condition called hypertrophic cardiomyopathy (HCM), an abnormal thickening of the heart muscle. Matthew had a soccer practice Thursday night, but during a pacer run in PE at school the next day, he complained of leg cramps before collapsing and dying.
At the NoTF screenings at high schools, students learn about the signs of of SCA, how to begin CPR and then how to use the AED’s which, if no heartbeat is detected in a person, will administer a powerful electric shock. NoTF’s Director of Operations (and Nick’s aunt) Suzanne Apodaca believes teaching the kids is critical to their efforts. “Adults think about things like liability, or they think a kid is having a seizure and they don’t do anything. Kids are willing to jump in and help. Give them the tools, they are going to change the world.”
NoTF’s activism in Olympia contributed to passage last May of House Bill 1556: It is now mandatory for Washington state students to have CPR and AED training before high school graduation. Schools must also have Emergency Action Plans in place should a cardiac emergency take place on campus.
But the screenings are trying to catch cardiac problems before they happen. “The first child we found with a hole in her heart, it was bittersweet”, says Darla Varrenti. “It was sad but we knew she could be fixed.”
Drezner says it takes special expertise to analyze the EKG of a young athlete – abnormalities look different than how they might look on an EKG of a 50 year old sedentary adult. For this reason, UW Medicine recently opened its Sports Cardiology Program. For those not able to attend a screening at their local high school (NoTF’s waiting list for high schools is three years) UW’s center at Husky Stadium will screen adolescents 12 and older for $50.
Following their own family’s loss, NoTF knows that their work is saving lives. As T-shirts worn by their volunteers read, “A picture is worth a thousand hearts.”