Jennifer Schwab Yanowitz of Tenafly knew she had to do something when she saw a terrifying drama unfolding on Facebook.
“In July, a friend of mine from high school in suburban Philadelphia found his 9-year-old son at the bottom of a swimming pool. They were on vacation, and he’d been watching him the whole time. They got him out and gave him CPR for 23 minutes; they called the EMTs, had to get him to the nearest hospital by helicopter, and he was on life support for a week.
“He’s okay now, but they didn’t know if he would live or die, or if there would be permanent damage.”
As it turned out, the child, one of a set of triplets, had an undiagnosed heart condition.
The odds are that 99 percent of children in such a situation would have died, Ms. Yanowitz continued. Her friend’s son was very lucky; after the initial disaster, everything else broke exactly right for him.
“He has a condition called Long QT Syndrome,” she said. “It’s a form of sudden cardiac arrest. There are a lot of undetected heart conditions. It’s not so uncommon, and it can come out when you’re swimming, trying to hold your breath.
“It felt like it could have been anyone’s kid,” she said. “I felt sick over it.”
Ms. Yanowitz was able to see the unfolding drama through a parent’s lens because she is a mother. She and her husband, Keith Yanowitz, have three children. Alexandra, 10, and Jordan, 8, are in school in Tenafly; Jake, 4, goes to nursery school at the Kaplen JCC on the Palisades in Tenafly.
Ms. Yanowitz decided to use the energy fueled by the unease created by the situation to help, using the tools naturally at her disposal
“I should add that I am the daughter of a cardiologist, Dr. Robert H. Schwab,” who retired from the Thomas Jefferson Hospital in Philadelphia as an associate professor of cardiology. She also spent 15 years in advertising and marketing and now is finishing up a master’s degree in social work, where she is interested in both individual psychotherapy and advocacy. It all came together.
She is spearheading a free screening for cardiac problems for high school students, run by the Tenafly Home/School Association and staffed by doctors and medical personnel from Englewood Hospital and Medical Center and Hackensack University Medical Center, on March 12. (See box for more information.)
The screening grew out of information she gathered as she researched the subject of children, teens, and sudden death.
“I started to investigate why we are not screening our children’s hearts,” she said. “They do it in Israel and Italy and Japan; the standard of care there is not the standard here. It’s a whole political quagmire.
“I also started to look at the deaths of children, first in New Jersey and then on the national level, and I learned that one student athlete dies every three days in this country from an undiagnosed heart condition.
“We also have seen the rise of competitive sports at earlier and earlier ages. My 10-year-old plays sports six days a week, and her friends are doing the same thing.”
As she researched, Ms. Yanowitz encountered Simon’s Fund, a Philadelphia-based foundation that provides heart screening and works for legislation that mandates screening. She worked with the fund to help set up the screening in Tenafly.
“Simon’s Fund has done more than 12,000 screenings across the country since 2005, and for every 100 or so kids they screen, about one child will have an undetected heart condition,” Ms. Yanowitz said.
“We all think that our own children are fine, and statistically they probably are, but there is a difference between thinking your child is fine and knowing it. The point is that you want to know about it, so your child can be protected.”
Ms. Yanowitz started planning the screening in August. “It’s a pretty massive project,” she said. “I started with the school system. I went to the local Home/School Association at my children’s school, met with the president, and explained why it’s important. I said that I would love to see the school give us the space and communications infrastructure.”
Tenafly has six schools, and Ms. Yanowitz met with the HSA heads at each one. “I went to several cardiologists I know, and I went to the CEO of Englewood Hospital, Warren Geller, to ask for their support.” They got it. Englewood is supplying cardiologists for the older teens, and pediatric cardiologists are coming from Hackensack, which specializes in treating children. All the doctors and staff members are donating their time.
The plan is that about 400 preregistered children, ranging from 8 to 18, will be screened. They will have filled out family histories, they will undergo a basic physical exam, and they will have an EKG. If it is indicated, they will be given an echocardiogram exam as well.
Ms. Yanowitz said that the politics involved in the issue of screening young children and student athletes for cardiac problems are maddening — they involve questions of cost/benefit analysis and a more basic we-don’t-do-this-because-we-don’t-do-this approach — and the fact that Israel, among other countries, demands such screening is telling.
“My perspective is just because something is done a certain way doesn’t mean that it is necessarily the right way,” she said. “I really believe that we have the power to do something. We are likely to identify four kids with heart problems, and in my mind that means that we are saving their lives. For the rest of them, we are giving parents peace of mind.”
Darren Sudman of suburban Philadelphia started Simon’s Fund out of grief and hope. “We started it about 11 years ago, after our son Simon passed away,” he said. “Simon was three months old. Initially we were told that his death was SIDS” — Sudden Infant Death Syndrome, the name given to the unpredicted, inexplicable deaths of seemingly healthy babies. “That didn’t mean anything to us.
“We felt like what they were really saying was we don’t know why your baby died, and we will put it in a bucket. And we would have been stuck there, just not knowing, but fortunately our pediatrician and the coroner were wiser. They said, independently, ‘You guys should go get your hearts checked. Babies don’t just die.’ As a result, my wife, Phyllis, was diagnosed with arrhythmia. We did some more research, and discovered that the syndrome has been linked to up to 15 percent of all SIDS deaths.
“We were surprised and disappointed. Having a child two years earlier, and then getting ready for our second one, we thought we knew all about SIDS. Everyone does, they think. It’s like the bogeyman. We thought it was from things like too-fluffy crib bumpers, or babies sleeping on their stomachs. But nowhere was the message that science has proven that 15 percent could have died of a heart condition.”
There are ways to treat the heart condition, he continued, including medication and having a defibrillator in the room.
“But they’re not even looking for it in Pennsylvania,” he said. “They test newborns for 38 conditions at birth, but not for congenital heart problems.”
New Jersey does perform that test — Governor Chris Christie signed the bill mandating such testing into law in 2014.
The Sudmans — Darren and Phyllis have two surviving children — are members of Or Ami Synagogue in Lafayette Hill, Pa. Mr. Sudman thinks of the work of Simon’s Fund as very much part of the demand to perform tikkun olam — to help perfect the world.
Dr. Robert Tozzi is the chief of pediatric cardiology at Hackensack. He is volunteering his services at the Tenafly screening because working to save children from heart disease is not only his job but also his passion.
“I have been doing this for 30 years, taking care of children who could die suddenly of hypertrophic cardiomyopathy,” he said. (The syndrome commonly is known as HCM.) “My oldest patient, who has been with me since birth, is 33. And I have families where I take care of parents until they are 80. This is an inherited disease; if you identify one member of the family, there is a good chance statistically that 50 percent of the family will have it.”
It is possible to have the condition — one of the conditions that the Tenafly screening could find — and not know it, Dr. Tozzi added. “The disease ranges from very insignificant to horrific. It was discovered in 1957; in the 1960s an operation to deal with it was developed but it had a horrible post-course. If you were diagnosed with this disease, it was not a good thing.
“Now, we can treat it medically, with pacemakers, with defibrillators, or surgically. It changed the life expectancy of people who have it to exactly the same as the life expectancy of the average U.S. citizen. It is a crazy story.
“In the ’80s, the development of the internal cardiac defibrillator also improved survival dramatically. Now we are doing genetic testing, so once we find a child who has it, we can do genetic sequencing, and we just have to get swabs from the mouths of other people in the family.
The Tenafly screening will be looking for more heart problems than just HCM, Dr. Tozzi said, including Long QT and Wolff–Parkinson–White syndromes. Neither is common, but both are detectable and easily treatable.
“I have worked with the families of parents who have lost children, and they always ask if it could be prevented,” Dr. Tozzi said. “In the majority of cases, yes, it could be prevented. We could identify people at risk and intervene.”
Phyllis Brown-Edwards is Englewood Hospital and Medical Center’s director of community affairs. “We are supporting the Protect the Heart Committee,” she said. “It aligns with our outreach initiative to supply support and medical services that are meaningful to our community.
“We are providing some of the physicians, the EKG tests, the echocardiogram tests, and we will have our EMT squad out to show children how to perform basic CPR and other lifesaving skills and techniques.
“Because I am a parent, I understand parents wanting to have peace of mind,” she continued. “Screenings like these emphasize the importance of early intervention.”