Caroline Shea Kyle attended Norwood Fontbonne Academy grade school in Chestnut Hill and was a 2021 graduate of Mount Saint Joseph's Academy in Flourtown. At "The Mount," she was an avid rower with three varsity letters. Her Lightweight 8 boat was the 2019 Stotesbury Regatta champion as well as the Scholastic Rowing Association of America National Champion. She was also a highly skilled surfer.
So it was a sudden and terrible shock to all those who loved her when 19-year-old Caroline died in her sleep at home on July 9, 2022.
"She was our sunshine," said her mother, Beth Kyle, "and heaven is a brighter place with her there. She was not depressed, not a big drinker, and had zero ailments. It was such a shock. This could happen to anybody. She just never woke up."
No one could blame parents who suffered through such a tragedy for retreating into a family cocoon and not coming out. But Beth and her husband, Robert, did just the opposite. After "coming out of our fog," the Kyles learned about a nonprofit called Simon's Heart, started two decades ago by Phyllis and Darren Sudman, of Plymouth Meeting, whose son, Simon, died at just over three months of age on Oct. 21, 2004, despite initially seeming to be a healthy baby.
At first, Simon's cause of death was believed to be Sudden Infant Death Syndrome (SIDS), a typical conclusion when a baby dies suddenly and unexpectedly. However, Simon's pediatrician advised Phyllis and Darren to have their hearts checked, as unknown causes can be passed from parents to children.
They wanted to know if Simon's death could have been heart-related, and they were worried about their other child, two-year-old Sally. Phyllis was eventually diagnosed with Long QT Syndrome (LQTS), an arrhythmia that can cause fainting and sudden death. This condition has been linked to up to 15% of all SIDS deaths.
"We had no idea about this condition until we heard from the Sudmans," said Beth. "And it's not just infants who have this. We had an autopsy for Caroline and found that she did have the gene for LQTS. The coroner said we and our children should get genetically tested, so we did."
According to Rob, "We found out that my wife does not have the gene, but I tested positive, and I am 56. Grace, our daughter, does have the gene, but our son, Rory, does not have it. My sister did not have it. My brother did have it, and three of his five kids tested positive. My mom, 82, also had it."
Amidst all of this challenging news, the Kyles also discovered some wonderful information. It turns out that once someone has a positive LQTS diagnosis, there is a relatively simple fix: a beta blocker prescription medication called Nadolol, which is normally used to treat high blood pressure and reduce the risk of stroke and heart attack.
According to the Mayo Clinic website, "Beta-blockers used to treat long QT syndrome include Nadolol and Propranolol … Taking this heart rhythm drug might help shorten the QT interval and reduce the risk of fainting, seizure or sudden death."
"Nadolol calms the heart and reduces the rhythm," said Beth, "but you may have to have a pacemaker installed. So we have family members who have a heart condition, but it is now controlled. If we had known about Nadolol a few years ago, we believe Caroline would be alive today."
The Kyles considered starting a nonprofit to spread the word about LQTS testing and beta-blocker medications, but they did not want to compete with Simon's Heart. Instead, they partnered with them to put on fundraising and heart detection events.
For example, one event tested 170 people from Gwynedd Mercy Academy, finding four who had the gene. Another event tested 140 people from Mount St. Joseph Academy, finding two to four who had it, possibly saving their lives. These events are free of charge, and aided by volunteer nurses and cardiologists.
According to the American Heart Association, more than 23,000 cardiac arrests happen every year to children under 18 in the U.S. This medical emergency causes 75 percent of all young athlete deaths. The Kyles testified last fall in Harrisburg on behalf of Senate Bill 375, a law that would require every high school in the state to have automated external defibrillators (AEDs), which can start a heart beating again in a person who has suffered sudden cardiac arrest. The bill is currently in legislative limbo.
"Schools like Springside, the Mount and Springfield Township High School have hospitals nearby," said Rob, "but many small schools in rural areas are far from a hospital. We can't bring Caroline back, but we can save other lives. That's why we are doing this."
"Losing a child is a pain you cannot describe, and we are still going through it," Beth added. "If we had only known, we would have taken all three kids for testing. Long QT is a silent killer. Never in a million years did we expect our healthy young daughter to have a heart attack. And it is so easy to prevent with just a blood test or swab."
For more information, visit simonsheart.org.
Len Lear can be reached at lenlear@chestnuthilllocal.com
