Testimony for Maryland Ways & Means

Chairwoman Hixson and Committee Members:

Thank you for giving me the privilege to testify in support of HB 427: The Sudden Cardiac Arrest Prevention Act.

My name is Darren Sudman. I am a co-founder and the Executive Director of Simon’s Fund. I am also Simon’s dad. I live outside of Philadelphia now. The last time I was at a formal ceremony in Annapolis, I was being sworn in to the Maryland State Bar. It’s been a while.

Nine years ago, my three-month old son passed away. Initially, we were told that it was SIDS, but SIDS really means, “sorry, we don’t know why your baby died.” The medical community was unaware. We were VERY unaware.

Fortunately, we had a curious pediatrician. She told us to get our hearts checked because “babies don’t just die.” Through this process, my wife, Phyllis, was diagnosed with Long QT Syndrome, an arrhythmia.

We learned from the Mayo Clinic that Long QT is responsible for up to 15% of all SIDS deaths. We learned from the American Academy of Pediatrics that about 2,000 children die every year from sudden cardiac arrest. We read stories in the paper about children like Tekau Rasayon from PG County, Santiago Vesperoni from Montgomery County and Jonathan Nolon from Bowie. Like so many other children, they collapsed and died while doing something they loved – playing sports.

We learned that SCA is the #1 cause of death of student athletes.

You see, like most of the residents in Maryland, and every other state in this country, we thought that sudden cardiac arrest was just an adult thing. Unfortunately, we had to pay the highest price to pique our curiosity. We were slowly becoming aware.

Do we really want other families to take the same road to enlightenment, or is there a more effective and humane way to share what we’ve learned.

There are a few ways that we can prevent sudden cardiac arrest from taking the lives of our children.

We can try to detect the conditions before they strike by providing heart screenings. That’s what Simon’s Fund does. We’ve screened over 8,000 students; helping 60 plus discover heart conditions.

Or, we can be prepared when it does by knowing CPR and having AED devices available.

Hopefully, one day, we’ll do all of these things, but the reality is that few people will avail themselves of the screenings, and not many people will reach for the AED device, until they know that SCA is a threat to their child.

On May 28, 2012, very few parents, coaches and players in PA knew about this threat. However, the following day, after the passage of Act 59, sudden cardiac arrest became a household term. Every parent and coach of a student knew that SCA wasn’t just an adult thing. They learned that Gatorade may not be the remedy when a player passes out. They learned that a racing heart isn’t necessarily caused by drinking too much soda.

Pennsylvania didn’t have to spend any money to provide this information, and the parents and coaches didn’t have to lose a child or student to learn this lesson.

Last year, the Journal of the American Board of Family Medicine released a study that found that 72% of all students that experienced sudden cardiac arrest exhibited symptoms.

Don’t we want to share this information with parents and coaches in Maryland? If the answer is yes, then HB 427 is a great vehicle.

Thanks for your time.

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."