Incredible Medical Research

When I was a little boy, I remember watching the show, That’s Incredible.  It featured all kinds of unbelieveable or freakish things.  I has very low expectations about the show’s credibility.  I just wanted to be entertained.

Today, I am attending the Parent Heart Watch conference.  I sitting with about 30 other families that have lost children to sudden cardiac arrest.  We are listening to doctors talk about the incidence of sudden cardiac arrest and death in children.  Unlike the content of That’s Incredible, I expect that the facts and findings from the medical community will be credible and based on scientific research.

There is a pretty vigorous debate about the need for ECG exams on our young athletes.  There is the issue of cost, liability, false positives, and quite frankly, the number of children affected.  This is a healthy debate, and as a parent who has lost a child, I recognize the validity of the economic argument – “there just aren’t enough kids dying to spend the money.”  However, this argument, when offered by a world renowned medical expert, must be based on scientific data that is credible and reliable.

Barry Maron, M.D., Director of the Hypertrophic Cardiomyopathy Center at the Minneapolis Heart Institute Foundation, issued a recent report that found that the incidence of sudden cardiac arrest in young athletes is “relatively low.”  His report determined that only 1,866 young athletes died from 1980 – 2006.  His findings are based on data found in a national registry.  That means that about 66 student athletes die every year from sudden cardiac arrest.  Hmmm . . . world renowned expert . . . national registry . . . findings, data, studies, reports . . . case closed, right?  Unless, you stop to ask yourself, “what is this finding based on?”

There is no national registry.  The registry is based on data that was gleaned from newspaper articles and internet searches.  If a newspaper didn’t carry the story, or the story did not show up in the search engines, the death was not reported and it did not end up in the “national registry.”  Furthermore, the athletes did not include children engaged in recreational sports, like Little League or intramurals.

This is the kind of research that I expect from 10th graders in my U.S. History class.  I couldn’t get them to stop using Google or Wikipedia.  I have different much higher expectations of medical experts that influence public policy.  Dr. Maron’s finding should have been the basis of a hypothesis that “incidence of sudden cardiac arrest in the youth is relatively low.”  He should have used that hypothesis to conduct a scienfic study to support his hypothesis.  Instead, he took advantage of his clout and reputation, and offered the world something much less, and now the truth will be that much harder to find.

Jake Berman

“I attended a heart screening at Colonial Middle School when I was ten. I was in the marching band and liked to hike and rock climb. I was diagnosed with Wolff Parkinson White Syndrome. After my procedure, I kept doing the same things.”

Whitney Jones

Whitney’s commitment to heart health advocacy began at 10 years old when she and her mother, Rayna, were diagnosed with Long QT Syndrome during a Simon’s Heart screening at Downingtown West High School. Despite the diagnosis, Whitney pursued her passion for cheerleading and continued to thrive in the sport through her college years at St. Joseph’s University. After graduating, Whitney joined Stryker Instruments as the Senior Specialist for Off-Site Meeting and Events, where she skillfully orchestrates events that promote health and medical innovation. Further extending her impact, Whitney is an active member of the Simon’s Heart Young Professionals Committee, while her mother Rayna contributes her expertise on the Board of Directors.

Katie Asper

“I attended a heart screening at Upper Dublin High School when I was ten. I played soccer. I was diagnosed with Wolff Parkinson White Syndrome and had an ablation to fix the problem. I attend Temple University.”

Matthew Green

“I attended a heart screening in Mason, Ohio, when I was ten. I participated in baseball, basketball, and diving. I was diagnosed with an atrial septal defect. I had surgery to repair the hole and started wearing a protective shirt during activity. I am graduating from Miami University.”

Valerie Krawitz

“I attended a heart screening at Colonial Middle School when I was ten. I played baseball, soccer, and track. I was diagnosed with Long QT Syndrome and an atrial septal defect. I had heart surgery to repair the hole and I take medicine for the Long QT. I can’t play competitive sports like I once did, but found other activities. Next year, I’m attending Penn State University.”

Drew Harrington

“I attended a heart screening at Radnor High School when I was ten. I played lacrosse, tennis, and basketball. I was diagnosed with Wolff Parkinson White Syndrome. I used to feel my heart beat really fast, but just assumed it was fine. Coincidentally, on Simon’s 7th birthday, I had a procedure called an ablation. Today, my heart is fine and I attend the University of Richmond.”

Alaysia Keeley

“I attended a heart screening at Norristown High School when I was ten. I played softball and enjoyed going to the mall with my friends. I was diagnosed with Long QT Syndrome. I had to stop playing sports and drinking soda. Now, I take medication and live a normal life.”

Kyle McCabe

“I attended a heart screening at Norristown High School when I was ten. I played baseball, basketball, and football. I was diagnosed with Long QT Syndrome. I stopped playing sports to protect my heart, but I still manage to have fun.”

Melissa Fair

“I attended a heart screening at Colonial Middle School when I was ten. I loved dancing and hanging out with my friends. I was diagnosed with Partial Anomolous Pulmonary Venous Return and Atrial Septal Defect. The doctor told me that my life would have been cut short if I hadn’t found out. I’m graduating from Penn State University this year.”

Zach Steffens

“I attended a heart screening at Stillman Elementary School in Tenafly, N.J., when I was fourteen years old. I love running, Tae Kwon Do, and Armenian cultural dancing. I was diagnosed with a rare congenital defect called ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery). I had open-heart surgery and recovered well. One month later, I suffered a cardiac arrest and an automated external defibrillator (AED) saved my life. I now have an implantable cardioverter defibrillator (ICD) and am healthier than ever. I will be attending The College of New Jersey and majoring in biomedical engineering.”

Annie FitzPatrick

“I went into sudden cardiac arrest at a local convenience store when I was 19 years old. My heart stopped and the only reason I am alive today is because an AED was readily available. I was diagnosed with Long QT Syndrome shortly after and was introduced to Darren and Phyllis with Simon’s Heart. I have been an active volunteer ever since. I went on to graduate Cum Laude from Drexel University with a double major in Business Analytics and Marketing and now work at a leading chemical company.”

Maeve Quinn

"I had a sudden cardiac arrest during softball tryouts at my high school. I was 15 years old. Thanks to the quick thinking of my coach and athletic trainer, they started doing CPR and using an AED immediately. This helped save my life. I had an implantable defibrillator surgically placed in case this happens again. I volunteer to educate people on the importance of screenings, learning CPR and the use of AEDs. Anyone can save a life like mine! I am planning on going to college for nursing."