Michele Wenhold waved goodbye to her son in 2004, watched him ride his bike off to school like every other day and about an hour later, she got a call that her perfectly healthy son had suddenly stopped breathing.
Eight days later, Jonathan Wenhold was dead at age 9.
At the hospital, Wenhold learned her son had an undetected heart condition called Long QT syndrome, which can cause the heart to elongate in between beating just long enough to stop the heart if it is not shocked back into a rhythm. Emergency responders did get Jonathan’s heart beating again, but unfortunately too much time had passed and Jonathan’s brain suffered an injury in that time that eventually led to his death.
“That was my first experience to learn that kids can have undetected heart syndromes and can have sudden cardiac arrest,” said Wenhold, an Ahwatukee resident. “I had no idea. We didn’t have a family history. The symptoms, only in hindsight, were spread out over his entire life. Even though I addressed them with pediatricians, because they are so vague like dizziness … he never actually had fainted or anything like that. On occasion, he shrugged his shoulders and said he felt a little light-headed.”
To process her own grief, Wenhold has become an advocate for awareness of sudden cardiac arrest in youth. Testing that might have diagnosed her son’s condition early on is costly, even today, and not recommended by most doctors. Even if testing was done regularly, there aren’t enough pediatric cardiologists in the U.S. to address the problem, Wenhold said.
While prevention may not be entirely possible right now, Wenhold and the organizations she’s involved with are working to at least help the public be prepared with CPR training and access to an automated external defibrillator (AED) in public places.
“Your chances of surviving cardiac arrest can vary 500 percent depending on where you have it,” she said. “Casinos are a great place to have it. They have strong emergency response planning. Airports, because there’s an AED every 100 feet and also because of emergency response planning. What we’re hoping to do with Parent Heart Watch and the Anthony Bates Foundation is to make schools a safe place to have sudden cardiac arrest where your chance for survival is more like 60 percent opposed to 18 percent or the national average, which is 5 percent.”
The Anthony Bates Foundation holds free heart screenings for people across the Valley in large volunteer-driven events. This year, the organization is doing eight heart-screening events, the most it has ever done before.
Parent Heart Watch is working with schools, partnering with the Arizona Interscholastic Association to create a simple-to-read emergency plan for all schools, especially sports teams, since an athlete is three times more likely to suffer sudden cardiac arrest. The program is called Anyone Can Save a Life.
The main message Wenhold is working to get out to the public is just awareness of symptoms and what can be done. Studies have shown bystanders with even minimal CPR training are more likely to step in and can save a life.
“As a parent, I want folks to know we really don’t screen our children’s heart very well, so we really have to be our own advocate and have those conversations with our pediatrician,” she said. “We should educate ourselves on the signs and symptoms of a heart issue. We need to be mature and take responsibility about knowing our family’s heart history.”
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