Parents who care: the grassroots movement to place AEDs in schools.

It's been said that there is nothing more painful than losing a child. When a child dies suddenly from cardiac arrest, the loss can be particularly traumatic in light of the assumption that this doesn't happen to children ... and the fact that the cure for most cases, rapid defibrillation, is so well established. Perhaps it is this deep anguish, and the need to draw some good out of it, that has motivated a growing number of parents to become champions for AED placement in schools.

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In January, the National Center for Early Defibrillation hosted "AEDs in the Schools: An Issues Forum" with the purpose of bringing together the many parent advocacy groups from across the country to develop guidelines for establishing AED programs in schools. (The group will meet again October 22-24 at NCED's national conference in Washington, D.C.) All of the parents who attended the forum know firsthand the devastation that a child's sudden cardiac arrest can bring to a family. Here are some of their stories.

John and Rachel Moyer, from Shawnee on Delaware, Pennsylvania, lost their son, Gregory, a 15-year-old high school student, when he collapsed and died on December 2, 2000, during a basketball game. The couple established the Gregory W. Moyer Defibrillator Fund, which has raised more than $100,000 to place AEDs in area schools. In addition, they worked with state legislators to develop the first bill in the nation that provided state funding for AEDs in schools (General Assembly of Pennsylvania House Bill 996). The program, sponsored by Rep. Kelly Lewis and signed into law by Gov. Tom Ridge, provided $2.4 million in funding for eligible school districts. The program provided two defibrillators at no cost to any school district that requested them and allowed schools to purchase additional devices at a discounted rate secured through a bulk contract.

John and Karen Acompora of Suffolk County, Long Island, were inspired to create the Louis J. Acompora Memorial Foundation in memory of their son, Louis, who died suddenly on March 25, 2000, at the age of 14. Louis, a lacrosse goalie at Northport High School, had been struck in the chest during a game. Although he was wearing a chest plate and was in otherwise good health, the impact caused commotio cordis leading to cardiac arrest, and Louis could not be resuscitated. The Foundation developed a comprehensive educational package that includes a book, video and PowerPoint presentation on AEDs in the schools. More than 4,000 copies have been distributed free of charge throughout the U.S. in an effort to increase awareness among parents and coaches about commotio cordis, the need for improved screening of student athletes, and the need for access to defibrillation in schools and athletic fields.

Subsequently, the Acomporas, with the help of Rachel Moyer, who lives in Pennsylvania but teaches in New York, successfully lobbied for a law that made it mandatory for all schools in New York to have AEDs. "Louis's Law" was signed by Gov. George Pataki on May 7, 2002. So far, the Acompora Foundation has placed 150 AEDs in New York schools, and at least five lives have been saved as a result.

For Linette Derminer, tragedy struck on June 7, 2000, when her son Kenneth, 17, died suddenly during football practice. She has since created the KEN (Kids Endangered Now) Heart Foundation, dedicated to the prevention of sudden cardiac arrest and death in youth and athletes. The Foundation website honors young people who have lost their lives to sudden cardiac arrest and others who have been saved. Derminer also has been active in promoting legislation in Ohio that would provide funding for AEDs in schools.

Project ADAM, a Milwaukee, Wisconsin, initiative, was developed in memory of Adam Lemel, a 17-year-old student at Whitefish Bay High School who collapsed on January 22, 1999, during a basketball game. Adam, an avid athlete who enjoyed many sports, had a rare form of cardiomyopathy that had gone undetected. Shortly after Adam's death, his parents, Joe and Patty Lemel, and David Ellis, a close friend of Adam's, channeled grief into action and worked with Children's Hospital of Wisconsin to begin a crusade to get AEDs into all 12 schools in Adam's high school conference. The effort was dubbed Project ADAM (Automated Defibrillators in Adam's Memory). To date, Project ADAM has provided defibrillators and training to more than 100 Wisconsin high schools and distributed more than 1,000 Project ADAM program manuals and CDs nationwide. Project ADAM also has distributed $74,000 in training grants and is now working with people in Minnesota and other states interested in emulating the program.

The Lemels also worked with Sen. Russ Feingold, who introduced the ADAM Act, which was signed into federal law by President Bush on July 1, 2003. The law calls for establishing a national clearinghouse for information on AEDs in schools.

SUSAN AND RANDY GILLARY also had to face tragedy. Their sorrow began on April 1, 2000, when their daughter Kimberly went into sudden cardiac arrest during a water polo game at a Michigan high school. Although a cardiac nurse and a cardiologist attending the game performed CPR, by the time the EMS team arrived with a defibrillator, it was too late. Kim never regained consciouness and died two days later at the age of 15. Two days after her death, Randy, who is an attorney, signed the articles of incorporation for The Kimberly Anne Gillary Foundation. The Foundation has raised more than $460,000 and distributed more than 160 AEDs to Michigan high schools; its goal is to make sure every one of Michigan's 860 high schools has at least one AED.

Chris and Tammy Shipler's lives were thrown into chaos when their 14-year-old son, Sean, experienced sudden cardiac arrest while running on the track at Inglewood Junior High School in Sammamish, Washington, in November 2000. Sean received CPR during the 10 minutes he was in ventricular fibrillation before paramedics revived him with a defibrillator; the neurological deficit he now suffers might have been prevented had an AED been on site. Chris Shipler, working with a group of parents and students spearheaded by Scott Bulger and his daughter Shannon (see "A Student's Perspective," page 3), began a campaign to educate the community about the need for AEDs in local junior and senior high schools. Shipler's group coordinated its efforts with a public-awareness campaign sponsored by the Rotary Clubs of Issaquah and Redmond, along with Seattle Mariners pitcher Arthur Rhodes and his wife, Leah. Rhodes arranged an autograph-signing session in which players signed autographs for more than 1,000 supporters and raised more than $50,000 for local school AED programs.

In August 2001, many of these families, along with others whose children were affected by sudden cardiac arrest, traveled to Seattle to share their experiences and unite in the common cause to save lives. As the group watched from the stands at a Mariners game, Sean Morley--who, thanks to an AED, had survived commotio cordis, the same syndrome that took Louis Acompora's life--threw out the first pitch to Arthur Rhodes.

School Saves

The good news is that thanks to AED placements in schools and at school events, there are increasing reports of survivors. In October 2001, sixth-grade student Daniel Golden, 11, collapsed at the bottom of a staircase at Monsignor McHugh School in Cresco, Pennsylvania, and school nurse Theresa O'Malley and a crisis response team rushed to his side with the school's new AED. After several shocks, Daniel's heartbeat was restored, and he was taken to a nearby hospital to recuperate.... In December 2001, Mohammed Shah, 15, went into sudden cardiac arrest on school grounds and survived because Smithtown (N.Y.) High School had an AED on site.... In December 2002, 16-year-old Andrea LaFleur collapsed in class at the Career and Technical Education Center at Orange-Ulster in Goshen, New York, from a previously undetected heart condition. If it had not been for quick action and the school's new AED, she would not be alive today.

And it's not always young people who benefit from school AED programs. In November 2001, Terry Artman, 54, an assistant cross-country coach at Glenbard High School in Glen Ellyn, Illinois, was at a pep rally after the team won the state championship. He had just finished his congratulatory remarks when he slumped to the floor, to the horror of his wife, Mary, and the 1,600 students, teachers and parents in attendance. School nurse Jean Karris and security guard Jim Kolzow, who is a retired paramedic, along with Barbara MacTaggart, a parent, became the resuscitation team and shocked the coach with the school's AED. "Terry was awake and alert before EMS arrived," said Karris. The school had implemented its AED program 18 months earlier, thanks to the efforts of Principal William Leensvaart and district administrators who wanted to prepare for the possibility of athletes suffering complications from hypertrophic cardiomyopathy.... In May 2002, a 54-year-old man collapsed while playing tennis outside an elementary school in Sayre, Pennsylvania. Two teachers grabbed the school's new AED and put their recent training to use. The man had a pulse when paramedics arrived a few minutes later.... In November 2002, 61-year-old John Tierney was in the stands of the high school football playoff game between Locust Valley and Seaford, New York, when he suffered a heart attack leading to sudden cardiac arrest. He was revived by a defibrillator that was at the scene.

Why Wait?

While some researchers and authorities continue to study and debate the relative value of school AED programs, families who have been personally affected by loss are forging ahead. Just knowing they might be able to prevent others from feeling their pain is reason enough.

NCED Can Help NCED and the foundations mentioned this article can help you every of the way in researching, proposing, funding, winning approval for, and implementing a successful AED program in your district or school. For a list of contracts, call NCED toll free at 866-AED-NFO or visit us online at www.early-defib.org.