Brevard duo spreads awareness of sudden cardiac arrest
- Sudden Cardiac Arrest warning signs%3A fainting%2C extreme shortness of breath%2C chest pain.
Life detoured for Evan Ernst and Zane Schultz three years ago in room 114 of the Phi Kappa Tau house at Florida State University in Tallahassee. A group of students who had taken up the cause of spreading awareness of sudden cardiac arrest around campus and at home decided it was time for something bigger.
"We asked a simple question," Ernst recalled. "Can we do more? We decided to start a national movement."
Play for Rafe became Who We Play For, and for the second time, the lives of the two Brevard natives, both 24, had changed course.
Today, Ernst is executive director of Who We Play For of Florida, though the cause does not stop at the Sunshine State's borders. Schultz serves as heart screening director, and that is at the focus of what Who We Play For does. It is now affiliated with groups in Louisiana, Texas and Washington.
Sudden cardiac arrest is the leading killer of young athletes, and early detection is the best weapon against it. Before late 2007, none of them knew either of those facts. Then, 15-year-old soccer player Rafe Maccarone involuntarily introduced his Cocoa Beach soccer team and the rest of Brevard County to reality before a late November practice.
Zane can still picture the day's events in his mind. Members of the team took their usual two laps around the practice field as a warm-up.
"Rafe was lagging behind, which was very uncharacteristic of Rafe," he said. As the group watched their teammate from across the field, he collapsed. On Dec. 1, he was dead.
Life had changed. Death had invited itself in and made it personal.
Now, their cause has become national. What once was a localized organization dedicated to remembering one young man by purchasing automated external defibrillators and providing scholarships has become a coast-to-coast drive for early screening.
"Play for Rafe was for Rafe," Schultz said. "Who We Play For is from Rafe."
The fact is that AEDs, even when present, do not guarantee survival from sudden cardiac arrest, the stoppage of the heart. Not all of those stricken recover, even when the life-saving device is present.
In contrast, via EKG, or electrocardiagram, nearly nine out of 10 cases of heart disease can be detected. In the history of its four affiliates, Who We Play For has screened 50,000 young people and found 60 life-threatening heart conditions.
VIDEO: Hear from Ernst and Schultz
The road from room 114 has been a long one.
"We had zero idea what to do," Ernst said. "Literally, zero idea."
They found their calling by zeroing in on an important question.
"I really think the first step was deciding that it was more than just Play for Rafe. Should we be working on prevention instead of the response?" Schultz remembered. "We decided we could be more effective if we devoted our resources on the front end."
The group had already placed eight AEDs — which deliver what can be a life-giving electrical shock – at Brevard locations where young athletes play. It also has provided 15 scholarships in Maccarone's memory.
The next challenge is to make heart screening universal among young athletes in the United States.
"When you get a physical, you get a stethoscope and a questionnaire," Ernst said, "but that's less than one percent effective" at detecting heart issues. Instead, Who We Play For works to bring EKGs to student-athletes before they suit up to compete.
This month, the Texas legislature began the process of making EKGs a mandatory part of high school sports physicals, and Who We Play For wants that to spread. Though they have been offering screening sessions across four states, both young men believe the key is to actually offer them in schools.
The Florida High School Athletic Association, which in recent years has mandated concussion training for coaches, may be adding heart awareness to the list of subjects coaches must study.
The association's Sports Medicine Advisory Committee has been developing a policy on sudden cardiac arrest education, and action could be taken at the FHSAA's April 26-27 board meeting. Coaches would be required to participate in online training and "strongly encouraged" to learn CPR and AED use.
The impact of sudden cardiac arrest in athletes may be catching on. As awareness of the dangers of concussion swells in the mind of the public, Ernst and Schultz point out that deaths from sudden cardiac arrest dwarf those from brain injuries.
Brian Hainline, appointed by the NCAA to be its chief medical officer in the wake of the concussion uproar, made news by pointing the national discussion in a different direction, toward the heart: "Concussions have overshadowed everything," he was quoted widely as saying. "Why aren't we talking about death?"
According to the Mayo Foundation for Medical Education and Research, sudden cardiac arrest causes 360,000 deaths in this country annually across the whole population. Estimates of the number of sudden cardiac deaths in young American athletes are as low as about a hundred per year. That is considered rare, but it is still many times the rate of concussion deaths. Estimates on the high end are that as many as 2,000 young adults die from sudden cardiac death each year.
Warning signs are not always present, but they include fainting, which is the most common; extreme shortness of breath and chest pain.
Ernst and Schultz have made inquiries for cooperation with the American Heart Association, which has expressed caution about possible false positives from EKG screening, but they haven't gotten much of a response.
An EKG in a hospital could cost $150, but through its fundraising efforts and cooperation with doctors, Who We Play For has been able to provide them for $15.
"I think we just got past the start-up phase," Ernst said. "As far as delivering heart screening, we're incredible at it."
Locally, the Play for Rafe movement remains alive. The annual Rafe 5K is expected to be held within the next few months. Who We Play For has lined up five Saturday sports physical sessions during the summer in Brevard in cooperation with 3D Sports Medicine and Orthopaedic Center. Those screenings will include EKGs.
Day-to-day, the job is spreading awareness and growing the cause.
"We want to share our story," Ernst said. "We want people to know what Rafe created. We want to make an impact."
Contact McCallum at 321-242-3698 or bmccallum@floridatoday.com. Follow him at www.facebook.com/FLtoday.brianmccallum and on Twitter @Brian_McCallum.