Project ADAM: Helping Schools Prevent SCA in Children

Tell us about Adam. When and how did he pass away? Active, competitive, and full of life! Adam was kind, thoughtful, active, and a serious student with a grade point average of over 4.0. The third of four brothers, Adam was a son that any parent would be proud of. As a multi-sport athlete, playing soccer, tennis, and basketball for his high school and ping-pong and home-run derby with the neighborhood kids, Adam was perfectly healthy or so we thought. Life didn t seem to slow down for Adam or his brothers. Then in January 1999, shortly after Adam s 17th birthday, the boys basketball team had an away game. Adam s father and I went to cheer the team on. Shortly after the start of the game, the coach called a time-out. Adam walked over to the huddle and then suddenly sank to the floor. His father and I were the first ones to reach his side. Then, two other mothers who were nurses came from the stands to help. It seems that when a young person collapses nobody thinks it s sudden cardiac arrest (SCA)! Eventually the rescuers did begin CPR on Adam. Was too much time wasted wondering what was wrong? I don t know…time stood still. There was no automated external defibrillator (AED) at the high school. How long did it take for the ambulance to arrive and the paramedics to find the gym? I don t know…time stood still. The paramedics found Adam in ventricular fibrillation and delivered two shocks to him while on the gym floor with no change in his condition. They tried unsuccessfully to revive him six more times in the ambulance on the way to the hospital. They tried in the hospital to revive him. On his death certificate it says he died on January 22, 1999 at 7:01 pm, but he died on the gym floor of the high school, never taking another breath. As part of a class assignment in eighth grade, Adam wrote: I want to live a life I can be proud of. And he did live a life he can be proud of. Now, even in death, he can be proud of the lives he saves through Project ADAM and the people he helps through awareness, education and advocacy. Were you at all familiar about what SCA was at the time? Where did you go to for information and support about SCA? I knew very little about SCA at the time, especially in the young population. Dr. Stuart Berger, Children s Hospital of Wisconsin medical director of Cardiology at Herma Heart Center and professor of Pediatrics (Cardiology) at the Medical College of Wisconsin, was our main resource after Adam s death. Although our regular pediatrician was helpful, he couldn t provide the details and information we were looking for to help us understand what happened and what this event meant for the rest of the family. Having three surviving sons, we needed to know if they also were at risk. When did you realize that other adolescents in the area were also experiencing SCA? Adam was the second young man to die in less than a month in the Milwaukee area. One month after Adam s death, another young man died. All three suffered SCA while playing basketball. This was shocking and revealing to know that adolescents were at risk! When did you create Project ADAM? Why was it important to start this organization? In addition, how did you become involved with the Children s Hospital of Wisconsin? Project ADAM s beginnings go back to a grade school friend of Adam s, David Ellis. A couple of months after Adam died, David decided to do something to help prevent similar tragedies. He heard about AEDs and decided to work to get one at his high school. David came up with the acronym A.D.A.M., which stands for Automated Defibrillators in Adam s Memory. David contacted me and told me about his desire, and I was very supportive of the idea. The Lemel family was on-board. Would Adam be alive today if an AED were available the day he collapsed? We ll never know for sure, but it would have given him a chance without it, he had none. David also contacted Children s Hospital to enlist their help. He was pleasantly surprised to discover that Children s Hospital had been working on developing a program to help high schools implement a public access defibrillation (PAD) program. It was a match made in heaven (thanks Adam!). Dr. Berger was committed to this program from the beginning and became the medical director of Project ADAM. Advanced technology makes the AED an important link in the chain of survival. Getting the device in the school building was not our only objective. We work to help schools create a complete program including training, education, awareness of signs and symptoms, and advocacy. What services does Project ADAM provide to schools? Project ADAM is a complete resource for schools in starting and continuing effective PAD programs. The Project ADAM manual, provided free to schools upon request, contains step-by-step instructions to effectively implement and sustain a PAD program. The manual includes templates, sample policies, legal considerations, as well as detailed information regarding the signs and symptoms of sudden cardiac arrest. A supplemental video/DVD offers a dramatic view of the importance of the program and provides clearly articulated medical information regarding sudden cardiac arrest. Grants are available to help schools offset the costs of CPR/AED training and training materials. Our staff and medical experts offer ongoing support for schools through our Web site, quarterly newsletter, email, phone consultation, and site visits. How many schools have you helped implement an AED program? How many people have you helped today through Project ADAM? Project ADAM is a national program with affiliate sites in Florida (Project ADAM Florida), Philadelphia (Youth Heart Watch, Children s Hospital of Philadelphia), and Atlanta (Project SAVE). We are currently working with other sites to establish new affiliates as well. We have helped well over 500 schools/school districts in Wisconsin implement a PAD program. We know of eight lives saved in Wisconsin as a direct result of the efforts of Project ADAM. A similar impact has been made throughout the country thanks to our affiliate programs. Project ADAM continues to grow as we consult and share information nationally and internationally in places such as Canada, England and Poland, to name a few. There is a much greater awareness of the benefit and need for this program today than we have seen in the past. What do you think all parents should know about diagnosis and prevention of heart conditions and SCA? Although rare, SCA in children and adolescents does happen! Knowing and recognizing the signs and symptoms of SCA will help identify at-risk youth. Symptoms may include: fainting during or after exercise, dizziness/lightheadedness, excessive fatigue associated with exercise, excessive shortness of breath associated with exercise, heart palpitations/abnormal heart rate or rhythm, high blood pressure, congenital heart abnormality, obesity, diabetes, family history of sudden death prior to age 50 or known heart abnormalities. Children and adolescents may not notify an adult about occurrences of the symptoms, especially if they fear it will affect their chances of continuing to participate in their desired sport. They may talk to a friend or a friend may notice something wrong. Therefore, educating kids about the signs and symptoms is important. Pre-sports screening is also important for prevention. Proper follow-up to diagnosis may include EKG, echocardiograph, and other tests deemed necessary. Yet, even with the best screening methods, some heart conditions will go undetected; that is why a PAD program is essential. Having a team of trained responders, including CPR training and AED use, can make the difference between lives saved and lives lost. Are you also involved in other statewide and nationwide advocacy projects for SCA awareness? We work closely with Parent Heart Watch, the American Heart Association, American Red Cross, John Hopkins ARVD Program, and the SCA Coalition. Likewise, we are working with the Department of Public Instruction on setting guidelines for graduating seniors on basic knowledge of the signs and symptoms of SCA and CPR/AED chain of survival. The ADAM Act, which was signed into law in 2003, will create a national clearinghouse to help schools implement a PAD program. Although there is currently no funding supporting this bill, Project ADAM has moved forward in a national effort to bring together affiliate sites (listed above) so we can share our resources and best practices, and coordinate our efforts to work efficiently across the nation to better serve the schools, staff and students. How can someone get involved with Project ADAM? Anyone can get involved with Project ADAM. If you are interested in starting an affiliate program at your hospital or beginning a PAD program at your child s school, we can help. Awareness and advocacy are key to saving lives! Is there anything else you d like to add? A child should never pass away before their parents. Help us save lives by supporting our PAD program. Project ADAM is a not-for-profit program. We rely on the generous donations of individuals and businesses to keep our impact thriving. Please contact us to make a contribution. To learn more about Project ADAM, please call them at 414-266-3889, send an email to projectadam@chw.org, or visit their Web site at: www.projectadam.com.