Almost a decade ago, four mothers who each lost a child to sudden cardiac arrest (SCA) came together and founded Parent Heart Watch (PHW), a grassroots network of parents turning their tragedy into positive actions to save young lives. 

In the beginning, this small but committed group of advocates had a tough task. For starters, the overall perception was that SCA happened to the elderly, not young people. Automated external defibrillators (AEDs) were not widely available, and most people didn’t know what an AED looked like. For this group of laypeople, the idea of early detection through EKG heart screening was a foreign concept. Plus, there was no way to tell how many kids died from sudden cardiac arrest because there was no mandatory and systematic registry. 

In response, PHW leadership began tracking cases of death and survival through membership profiles and media reports. A Medical Advisory Board of physicians from across the country was assembled, bringing diverse expertise and experience to the table. This Board has helped guide the activities of PHW throughout the years.

Parent Heart Watch ultimately grew to become the national voice solely dedicated to protecting youth from sudden cardiac arrest and preventable sudden cardiac death. The organization has evolved to include not only parents who have lost a child to SCA, but also parents who have a child that survived SCA or is living with a heart condition, young survivors, medical and allied health professionals, and other advocates. What do all PHW members have in common? They are action-oriented people who implement programs in their communities and beyond to prevent this tragedy from happening to other families.

Approaching a Decade of Action and Change…Thousands Impacted

PHW advocates for primary and secondary prevention to save lives. Primary prevention involves heart screenings with an EKG and/or echocardiogram. Secondary prevention includes being prepared in case of a cardiac emergency. With an average reporting rate of just 20%, PHW members have placed over 2,800 automated external defibrillators, conducted heart screenings on over 124,000 kids, and trained 62,900 people in CPR and AED use, and affected CPR/AED Emergency Response Planning and/or SCA legislation in more than 20 states.

Through the years, Parent Heart Watch has worked diligently to shift the nation’s consciousness in this arena. Targeting schools, sports leagues, and other youth-serving organizations, PHW had a clearly defined focus. Through the free distribution of educational materials such as posters, brochures, fact sheets, and public service announcements, the organization has helped raise awareness on topics such as the warning signs and symptoms of a heart condition in youth, and what to do in case of a cardiac emergency.

Each January, PHW hosts an annual conference, bringing together parent advocates, medical and allied health professionals, researchers, and industry professionals to share the latest research and technology advances on heart screenings, emergency preparedness, and rapid response efforts. 

At a national level, PHW leadership collaborates with organizations such as the National Athletic Trainers’ Association, National Parent Teachers Association, National Child Death Review, and the National Institutes of Health (NIH) to develop initiatives that support each organization’s broader mission.

In 2015, Parent Heart Watch will celebrate its tenth anniversary, recognizing the progress that has been made, and charting the course for challenges to come. The 10th Annual National Conference is being held in Scottsdale, Arizona on January 16-18, 2015. 

What will PHW members see as we commemorate the past? They will see a small group of dedicated people that grew into a small but powerful army. They will recognize accomplishments in research showing that AEDs are now much more recognizable by the public. They will see that 41 PHW members conduct free or low-cost heart screenings in 25 states. Lifesaving laws have been passed across the country that call for AEDs in schools and for CPR/AED training to be a requirement for high school graduation. 

Most importantly, they will witness how their collective efforts served as a catalyst in establishing the incidence of sudden death in the young. In 2013, NIH and the Centers for Disease Control and Prevention (CDC) announced their collaboration to create a pilot program — Sudden Death in the Young Registry. This collaboration by the NIH and the CDC is essential for the collection of comprehensive data, estimating the incidence of sudden death in infants, children, and young adults, improved death investigations, as well as expanding research and prevention strategies. Ten grantees have been awarded funding; six are current or former grantees from the Sudden Unexpected Infant Death (SUID) Registry: Georgia, Michigan, Minnesota, New Hampshire, New Jersey, and Wisconsin. Four are new grantees: Delaware, Tennessee, the city of San Francisco, and the Tidewater region of Virginia. Data collection will begin in early 2015.

What does Parent Heart Watch hope that the next decade will bring? People will recognize SCA in youth and immediately begin the cardiac chain of survival. Early detection through cardiac screenings will become a standard of care. Every school and youth-serving organization will be equipped with an AED and have a written and well-practiced emergency action plan in place. Teachers, coaches, parents, and students will be trained in CPR and AED use. 

Ultimately, the vision is that the number of young SCA survivors will increase, and the number of deaths will decrease. As one PHW member who lost her daughter so eloquently said about the young SCA survivors that attend the annual conference, “We look at these beautiful young people standing in front of us, and we wish it was our children, but are just happy it’s someone’s child.”

For more information, visit www.parentheartwatch.org.