Her father’s death at age 26 from sudden cardiac arrest automatically put Janel Simmers into a high-risk category that meant close surveillance by a cardiologist and yearly heart screenings.
At age 13, after a screening picked up a problem, she was diagnosed with hypertrophic cardiomyopathy — thickening of the walls of the heart — and not allowed to play sports anymore.
At age 20, after some symptoms that included nearly passing out, Simmers had surgery to place an implantable defibrillator in her chest. The device was a failsafe measure — it would restore normal rhythm if a life-threatening arrhythmia occurred.
“I’ve been good since then,” said the South Lebanon Twp. woman, now 32. “Screenings saved my life. I am completely in favor of them for kids.”
This fall, coaches, trainers, student athletes and their parents at school districts in Pennsylvania will be learning more about sudden cardiac arrest. A first-of-its-kind law signed by Gov. Tom Corbett in May requires that student athletes who exhibit warning signs of sudden cardiac arrest be pulled from play until they can be cleared by a doctor or nurse practitioner. The law also mandates that public school coaches undergo annual training on the condition and that information on a soon-to-be created Department of Health website be shared with families.
While the law does not require heart screenings for athletes, many hope that it raises more awareness and inspires parents to request the tests.
Susquehanna Twp. mother Rhonda Foster, 56, can only wish that her daughter Janna Becker would have had a screening. She died of sudden cardiac arrest at age 15.
“It’s hard living afterward and not feeling bad about choices you made or wishing you could do it over again,” said Foster, who thinks that a test called an EKG would have uncovered Janna’s heart rhythm disorder, long QT syndrome. Had it been identified, Janna could have been treated. Her daughter had a couple of fainting spells prior to her death, but her primary care doctor attributed them to dehydration and not eating enough.
Foster is on the board of directors of Parent Heart Watch, an organization dedicated to bringing awareness to sudden cardiac arrest, which kills an estimated 2,000 people under age 25 in the United States annually.
The group organizes free EKGs for children and youth because sudden cardiac arrest often strikes with no warning signs but is related to a number of heart conditions that could be picked up by a screening, she said.
The organization gets alerts when children and youth die of sudden cardiac arrest. “We get alerts every day and sometimes two and three times a day. Every day kids are growing up supposedly healthy but with heart conditions we don’t know anything about.
“Cardiac arrest is the one of the most common causes of death in adults,” she said. “Could it be that these were young people with these underlying conditions who made it to adulthood?”
In the nearly 10 years since her daughter’s death on New Year’s Eve 2002, Foster said she is discouraged that “we’re still not screening kids.”
“Athletics can be a trigger if a child has cardiomyopathy or another heart condition,” said Dr. Jeffrey Luck, a Lancaster cardiologist who agrees that children should have a baseline EKG between ages 10 and 15. “If you screen 100 kids and you pick up only one with a heart condition that’s life threatening, it’s a success story.”
Cris Over, a Carlisle resident whose son Nicholas died at age 20 of sudden cardiac arrest in 2001, said she tells parents to request their pediatrician order an EKG, even if parents have to pay for it out of pocket. “I know doctors usually don’t want to do it unless there’s a known heart condition, but I tell parents, request it,” Over, 55, said.
Luck, who formerly worked at Penn State Milton S. Hershey Medical Center and volunteered to do heart screenings in the midstate organized by Parent Heart Watch, said insurance companies should pay for a one-time EKG for every child. In the meantime, he said, parents won’t find the cost excessive.
“You can spend $90 on a pair of sneakers, but nobody wants to spend $50 on an EKG,” he said. “It’s a cheap test compared to a CAT scan, which costs $1,000, or an MRI, which costs $2,000.”
Over and her husband, George, whose son had a type of inherited cardiomyopathy called arrhythmogenic right ventricular dysplasia, channeled their grief into the Nicholas Ryan Over Foundation. They raise money for community heart screenings and to provide automated external defibrillators in local schools, churches and organizations.
Foster enlisted area cardiologists to do screenings at Susquehanna Twp. High School several years ago and said that the screenings did identify children who were at risk for sudden cardiac arrest.
“Parent Heart Watch does these screenings across the country, and 2 percent of the youths we screen with an EKG are found to have an abnormality and 1 percent have a life threatening condition,” Foster said. “Screening is absolutely saving lives.”
It has been hard to find doctors willing to volunteer to do screenings, and it’s expensive — about $10,000 — to hire a company to do them, Foster and Over said. They are looking for area cardiologists who would like to donate their time and EKG machines to the cause.
Dr. Michael Consevage, a pediatric cardiologist with Moffitt Heart and Vascular Group, PinnacleHealth Cardiovascular Institute, cautions that one-time screenings can give a false sense of security.
“Screenings can pick up a predisposition sitting there kind of like a time bomb and, by all means, you want to know that,” he said. “But there is a delayed age of onset in a lot of these inherited heart conditions, so a normal EKG at age 10 or 11 doesn’t mean you won’t develop a problem later in life.”
Some heart conditions that pose a risk for sudden cardiac arrest, such as abnormal origin of the coronary artery, likely will not show up on an EKG, he said.
Screening in large numbers may also show up nonspecific findings that might not mean anything but will send many children to a cardiologist just to be sure, he said. If that happens, he fears there won’t be enough cardiologists to see everyone who will get referred.
“The best law I’d like to see enacted is one that would require all trainers to know basic life support and how to use an AED,” Consevage said. “And require them to have the AED on the field at practice time, not locked away somewhere in the school.”
Warning signs and symptoms of a heart condition:
- Fainting or seizure during or after physical activity or resulting from emotional excitement, emotional distress or startle.
- Chest pain or discomfort/racing heart beat.
- Unexplained fainting or seizures.
- Unusual shortness of breath, fatigue.
- Dizziness or lightheadedness during or after physical activity.
- Family history of heart disease, unexpected sudden death during physical activity or during a seizure or any other sudden, unexplained death of a healthy family member under age 50.