A Mission Borne Of The Heart

Darla Varrenti never imagined when saying goodbye on the phone to her teenage son, Nick, that it would be forever.

He’d been living with her in Mill Creek but had moved back to his native Pennsylvania 10 months prior to stay with his father, then divorced from his mother, mainly so he could play high school football with longtime buddies from his youth. That fateful Labor Day weekend in 2004, the 16-year-old starting nose guard played in a varsity football game on Friday night, filled in during a junior varsity contest on Saturday and then phoned Varrenti on Sunday before heading to bed in preparation for a holiday Monday practice.

But he never made it.

“His dad went to wake him, and he’d died in his sleep,” Varrenti said.

It was later discovered Nick had an undetected disease called hypertrophic myopathy, which resulted in an enlarged and thickened heart that restricted his blood flow and caused the cardiac arrest that killed him. On Saturday, Varrenti and her sister, Sue Apodaca, were at the Kraken Community Iceplex to stage the latest clinic by their two-decade-old Nick of Time Foundation, a nonprofit named after her late son and offering free heart screenings to thousands of young athletes ages 12-to-25 to prevent sudden cardiac arrest.

“Nick’s heart was 2 ½ times the size it should have been and if he’d have had a heart screening they would have found his heart was too big and that something was wrong,” said Varrenti, whose foundation gave screenings and additional CPR training to more than 250 young hockey players and other athletes at Saturday’s clinic hosted by the Kraken and Virginia Mason Franciscan Health, the team’s Medical Services Provider.

Such heart screening is typically not offered as part of routine sports physicals and can cost between $125 and $1,500.

But the foundation offsets that exclusively through donations and volunteer work by medical professionals. They suggest, but don’t mandate, that families receiving the screenings for their child make a $25 donation to the foundation, keeping their costs roughly in-line with a typical co-pay for a doctor’s visit.

Each participant at Saturday’s clinic received an electrocardiogram (EKG) test to analyze their heart’s electrical activity. If additional screening was warranted, often the case about 10%-to-20% of the time, they also underwent a limited heart sounds examination or echocardiogram for further cardiac imaging.

Varrenti said about 700 of some 32,000 youngsters screened by Nick of Time since inception have needed the additional testing.

Participating athletes attending Saturday’s clinic also learned “Hands-only CPR” and how to use an Automated External Defibrillator.

The foundation this fall will host a clinic the first Wednesday of every month at a different local high school. They’ve also now done three Saturday clinics, this time with the Kraken and two prior ones with the Seahawks at their Virginia Mason Athletic Center.

“Sudden cardiac arrest is the leading cause of death among young athletes,” said Virginia Mason Franciscan Health physician and Kraken Team Physician Dr. Henry Pelto, who is also a foundation advisory board member and one of the volunteers working Saturday’s clinic. “It’s an extremely rare thing but it happens. People have heard about these tragedies all over the news or from personal experiences. And people from the Nick of Time Foundation have used some of these unfortunate tragedies to say, ‘Hey, can we do better? Can we prevent these things from happening?’”

Pelto said the EKG screening, while not routinely given to many young athletes, helps detect up to three quarters of the conditions that can cause cardiac arrest.

“And then, we try to help people manage those conditions,” he said. “One of the downfalls of screenings in the past was people would say, ‘Oh, you’ve got this or that condition so you can’t play sports anymore.’ But we’ve moved well past that and really want to help people play sports even if they have these conditions.”

Pelto said one of the young female athletes tested Saturday was found to have a heart condition known as “Wolff-Parkinson-White” -- characterized by an extra electrical pathway in the heart that can cause rapid, pounding heartbeats -- that could have resulted in sudden cardiac arrest if left untreated. The condition impacts about one in every 1,000 people.

“It’s one of the most common ones that we find in our screenings,” he said. “And again, fortunately it’s one that we can find and treat and have people back doing all of their activities. So, we’ll treat her and get her taken care of and hopefully she’ll get back to doing everything she wants to do pretty soon.”

Varrenti’s son never had that option.

A lifelong Pittsburgh Steelers fan, Nick wore the No. 58 jersey of feared 1970s linebacker Jack Lambert and showed no signs his life was veering towards its end. He’d also been a high school wrestler and never seemed to tire from physical activity, even when playing in consecutive football games the weekend of his death.

“My sister and I were these moms that were always in the school volunteering as booster parents,” she said. “We’d never heard that this was something we had to check our kids for. We thought that taking them for a wellness check or sports physical and having them just check kids’ hearts with a stethoscope was enough. But it’s not because you have to need to take a picture of things that are electrical and structural in the heart.”

Varrenti has learned to accept that it’s too late to dwell on what she might have done differently. She only hopes that parents today with knowledge she didn’t have take the time to do something about it.

Having professional sports team partners such as the Kraken and Seahawks is something she also hopes her relatively small, Mill Creek-based foundation can use to spread the word even further.

“I don’t want anyone else living through what we did.”