Today, My Heart is in Michigan

I grew up in Ohio. I graduated from Ohio State. I met my wife there.  I love the Buckeyes.  However, today, as they hold the funeral service for Ryan Fischer, my heart is in Michigan.  Ryan was Grandville’s hockey team captain and he died from an enlarged heart on the eve of the state championship.

Michigan is no stranger to losing students to heart conditions.  In 2013, it was track runner, Mario Campbell.  In 2012, it was a kindergartner at Field Day.  In 2011, it was high school basketball standout, Wes Leonard, who collapsed and died after making the winning shot.

Leonard’s death received a lot of media attention and Fischer’s is too.  That’s what happens when our most gifted athletes, our children, collapse and die for no apparent reason, from conditions that are detectable and treatable.

Following Wes’ death, this headline read, “Study finds student athlete sudden cardiac deaths like Fennville star Wes Leonard are as rare a deaths from lightening.”  The headline was based on a paper appearing in Circulation, an American Heart Association publication, and was titled Sudden Death in Young Competitive Athletes – Analysis of 1866 deaths in the United States, 1980 – 2006.

According to a cursory Google search, at least four Michigan students have died from sudden cardiac arrest in the last two years.  It is probably more accurate to say that four deaths have been picked up by the media.  So, what is the real number?  How many children die from sudden cardiac arrest?

This lightning analogy appeared in Circulation, a publication of the American Heart Association in 2009.  The death count was rooted in the US National Registry on Sudden Death in Athletes, a creation of the Minneapolis Heart Institute Foundation.  This “registry” is based on LexisNexis, Burrelle’s Information Services, Internet searches, reports from various governmental agencies and independent organizations.

I am shocked (no pun intended) that this resource can be identified and accepted as a registry in the medical world.  The term registry connotes official, legitimate, scientific and comprehensive.  At best, these sources offer an unscientific and incomplete glimpse of the picture.  They are better suited for students completing research papers.  To use this “registry” as the basis to influence healthcare policy and debate a standard of care is misleading and reckless.

Case in point.  Nicholas Bennett, a student athlete from Ionia Middle School (also Michigan), died September 25, 2013.  At the time, his obituary was the only record of his passing, and it did not reference sudden cardiac arrest.  It wasn’t until the passing of Ryan Fischer, six months later, that we learned more about Nicholas from this article.  How many more Nicholases are not being counted?

This “registry” suggests that approximately 72 student athletes die nationwide every year.  So, how many student athletes are dying from lightning strikes?

According to the National Oceanic and Atmospheric Administration, seven people died from lightning in the State of Michigan between 2003 – 2012.  To put another way, 0.7 people died each year from lightning.  By the way, all seven were adults.

This debate isn’t about Michigan though.  It is about the United States and this number doesn’t take into account states like Florida and Texas that have many more lightning deaths.

The American Academy of Pediatrics estimates that 2,000 children die in the U.S. every year from sudden cardiac arrest.  When extrapolated over a fifty-three year period, this number is 106,000.

During this same period (1959 – 2012), the NOAA recorded 4,002 deaths from lightning strikes, and the overwhelming majority of the deaths were adults.

The conditions that cause our children to drop dead are detectable and treatable.  We have a cure . . . it’s called prevention.  While it is tragic to read about the deaths of Wes, Nicholas, Ryan and Mario, the real tragedy lies within a very well respected segment of the medical community that confuses and misguides the public about the incidents of sudden cardiac arrest and death in children.  If we can’t rely on them to help us define the scope of the problem, we’ll never solve the problem, and we’ll continue to bury children like Ryan.

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."