Parent Heart Watch from
36,000 Feet: Perspectives from the Annual Leadership Conference

Sharon Bates, Parent Heart Watch (PHW) co-Founder and affiliate member, and Founder of the Anthony Bates Foundation (ABF)
Sharon Bates, Parent Heart Watch (PHW) co-Founder and affiliate member, and Founder of the Anthony Bates Foundation (ABF)
Looking back on the weekend of January 18-21, I was struck with jubilation, grief, laughter, and sadness, all wrapped up into one ball of emotion. These events are hard to organize, but even harder to stay away from when there are so many amazing people from PHW providing wonderful support and education. Each new PHW member initially feels raw and wounded, and needs what I did not find right away at the beginning of my own grief journey, which is support from others that completely understand and believe things could be different. From this view at 36,000 miles above the earth, in an airplane on my way back home to Phoenix, Arizona, I realized my contributions, love, prayers, support and heart screening programs with Parent Heart Watch still matter to many. Over the past seven years there were many times when the wall of defeat stared me in the face. It was just then that another door of opportunity would open, another parent would need to hear my compassionate story of hope, and so I continued on this journey. One step at a time, we can all make a difference in our own way, through our own healing and with our own compassionate story of loss, and then continue to share additional chapters of life full of victories and celebration. We have to keep on making a difference in our own way. We all matter, just as our children s lives all mattered to us and to the world. The membership of Parent Heart Watch is of great importance to me, and just as important to the parent membership are the new survivor members. We need to hear and share in their victories, too. As hard as that might be for both sides, each survivor is a celebration of the children that are represented by PHW. I would also like to give a special thanks to Matt Nader for sharing his story of survival, inspiring us to believe that if things are done properly, more young lives will be rescued and saved. Meeting Overview Parent Heart Watch reached new heights, new connections, larger exposure and a greater audience at the 3rd Annual Leadership Conference. On January 17, 2008, the first day of heart health advocacy was launched with a heart screening event hosted by the local area high school (Bishop Blanchet High School in Seattle). Parent Heart Watch, the Anthony Bates Foundation, Nick Of Time (NOT) Foundation, and event sponsors offered heart screenings to almost 300 young people. Local area cardiologists, medical professionals, local parents and people from around the globe came together to support this effort and share in the knowledge that lives will be saved through preventative cardiac screening programs. In attendance was a special guest, PHW member and friend Mary Vesseghi of the Irish Heart Fund in Ireland. She was gracious with her attendance and assistance, and absorbed the process of this heart screening event to take back to her homeland and advocate for a better screening program for the young people of Ireland. During this heart healthy program, 26 young people were given the life-saving news that they needed further heart evaluations. For example, one young girl was found to have patent ductus arteriosus PDA (a serious hole in her heart) and was scheduled for immediate heart surgery to correct the problem. Also found at the screening event were three people with bicuspid aortic valves, three people with left ventricular hypertrophy (LVH) that could be later diagnosed as hypertrophic cardiomyopathy (HCM), and the remaining were noted as having mitral valve prolapse, other leaky valves or high blood pressure. Like the Seattle event, previous heart screenings organized by membership across the nation have resulted in the detection of heart abnormalities in nearly 10% of young people screened. These young people will all need follow-up as well as our prayers. Bright and early the following day, the CME Conference Prevention of Sudden Cardiac Death in Young Athletes, hosted by the University of Washington and Parent Heart Watch, commenced with more than 125 cardiologists, sports medicine doctors, athletic trainers and other medical professionals, and 60 PHW members in attendance. The Course Chair was Dr. Jonathan Drezner, Associate Professor of the Department of Family Medicine at the University of Washington School of Medicine, who put together and all-star team of physicians. The dialogue and presentations made the event a success. The keynote speakers included: Domenica Corrado, MD, Professor of Cardiology, Electrophysiology, University of Padua, Padua, Italy; Stuart Berger, MD, Professor of Pediatric Cardiology at the University of Wisconsin and Chair of Project ADAM; Victoria Vetter, MD, Professor of Pediatric Cardiology at Children s Hospital in Philadelphia, Pennsylvania; Robert Campbell, MD, Professor and Division Director of Cardiology at Emory University and Sibley Heart Center Children s Healthcare of Atlanta; Mark Link, MD, Associate Professor, Department of Medicine at Tufts University School of Medicine; Alan Maisel, MD, Professor, Department of Medicine, and Director of the Coronary Care Unit at the University of California-San Diego School of Medicine; Jeffrey Towbin, MD, Professor, Department of Pediatrics, Cardiovascular Medicine at Baylor College of Medicine and Chief of Pediatric Cardiology at Texas Children s Hospital; Jack Salerno, MD, Assistant Professor, Department of Pediatrics, Director of Electrophysiology, Children s Hospital in Seattle; Mark Lewin, Associate Professor, Department of Pediatrics, Co-Director of Cardiac Ultrasound Children s Hospital in Seattle; Kimberly Harmon, MD, Clinical Associate Professor, Department of Family Medicine, Director of Sports Medicine, University of Washington; Richard Page, MD, Professor and Division Head of the Department of Medicine, Division of Cardiology, University of Washington; as well as many dignitaries from the medical profession. Topic sessions began with an overview of sudden cardiac death (SCD) incidence, HCM, arrhythmogenic right ventricular cardiomyopathy (ARVC), channelopathies, and commotio cordis. The Cardiovascular Screening in Athletes session began with the presentation ECG Screenings through the Italian Experience and also included topics such as PPE history and physical exams, ECG screenings in the United States (pros and cons), and echocardiography. The afternoon sessions included information on athletic heart syndrome, genetic testing, natriuretic peptides, pediatric and age-specific ECG differences, and race- and gender-specific differences. The final sessions provided oversight on AED programs and emergency planning in athletics, CPR updates, rapid cooling after sudden cardiac arrest (SCA) and the prevention of commotio cordis. The PHW Annual Leadership conference also started Friday afternoon with a new member orientation. In a more intimate setting, many of the first-time attendees were able to connect by sharing their stories with some of the PHW board members and other leaders. A touching tribute dinner was held that night at the Benaroya Symphony Hall for the CME physicians and PHW members. The event included displays of PHW children on poster-size cards featuring their pictures and stories; the room was silent as attendees read the posters, wiping away tears at the thought of children taken too young. A video tribute concluded the evening, first with pictures of each of the young lives lost to SCA, then on to tributes to our SCA survivors, which ended the evening on an uplifting note. The blessings of their lives are the catalyst of our efforts combined. On Saturday morning, the PHW Leadership Symposium was in full swing. There were over 100 attendees representing 26 states; 46 of these attendees had never before attended a PHW meeting. Educational programs, breakout sessions dealing with SCA research, statistics, PAD programs, heart screenings, advocacy, and stories from the heart were the topics of the sessions presented. Throughout the meeting there was laughter, tears, healing and shared compassion; it is our shared aim to continue our efforts for all the people that still need us to represent the national voice. On Saturday morning, we were fortunate to also host a physician panel consisting of Drs. Berger, Campbell, and Drezner, who all support the PHW s membership in our quest to stamp out SCA in young people. More direct questions were asked by the audience, and we were able to share our desire to be more involved and offer continued support by PHW to the medical communities nationwide. Later in the day, Parent Heart Watch s PSA Committee shared the Rewind public service announcement video, and asked each one of us to take this back to our communities and request viewing time by our local television and cable networks. All of these programs within the leadership seminar were invaluable to the first-time members, and added more encouragement and support to the returning membership. About PHW Parent Heart Watch calls on the talents and passion of parents whose children have suffered from SCA, as well as with others who support our cause. Its mission has been brought to life through many programs. Since the group s inception in 2005, Parent Heart Watch members have trained thousands in CPR/AED response. They have placed thousands of defibrillators across the country, screened children across the country, spoken at or attended local, state and national venues addressing SCA in youth and introduced or passed laws in several states. Advocates from across the country have also gathered together to work towards education and prevention of one of the leading causes of childhood death. Collectively, these efforts will significantly reduce the deaths caused by SCA, the leading cause of death in the United States. Thank you to everyone for your continued contributions, efforts and support to prevent these tragedies and raise awareness in your local areas. Above all we are here for you, to shoulder this effort, assist in your struggles and celebrate with you the victories of saving young lives in honor of your child, my child and all the children that have passed too young. Keep up the good work! We are all making a difference together. Many families, one cause: the national voice! For more information, please visit: www.parentheartwatch.org www.anthonybates.org www.nickoftimefoundation.org