It was two days before Christmas 2019, when she felt it.
Kiersten Rock-Torcivia was used to the nerves before her synchronized skating competitions. But this day on the ice at Morristown’s Mennen Arena, the feeling was different, frightening.
Her heart was racing. Black spots clouded her vision. The teenager from Rockaway Township glided off the ice and was rushed to the emergency room.
“When we got there, my heart rate was over 283,” Rock-Torcivia, now 16, recalled. “They were shocked I was still conscious. It was chaotic all around me. They didn’t know what to do.”
It would take months of testing, but the junior from Morris Knolls High School was eventually diagnosed with ARVD/C, a rare heart disorder that can cause a sudden, deadly shutdown of the electrical system that runs the heart. Doctors sometimes call it a “silent disability,” given its propensity to cut short the careers of young, outwardly healthy athletes.
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ARVD/C affects fewer than 1 in 1,000 Americans but is responsible for a fifth of all sudden cardiac deaths among people under 35 years old. For Rock-Torcivia, its effects have been drastic: After years of competing in the rink, she’s been told to avoid anything more strenuous than yoga. She was forced to walk around school toting a portable defibrillator, hoping her friends wouldn’t have to use it.
Yet the struggles have also inspired her to give back. Rock-Torcivia founded a charity to provide automated external defibrillators (AEDs) to local communities. On Sunday, she will host an auction in Rockaway Township to buy another one of the $1,200 devices for a Paterson nonprofit. Other donations have gone to pediatric hospitals.
When she arrived at Morristown Medical Center on Dec. 23, 2019, Rock-Torcivia said, the doctors were stumped.
After her heart rate stabilized, she was hooked up to monitors and put through a battery of tests – EKGs, stress tests, MRIs and CT scans. But physicians still couldn’t explain what was happening. They told her to keep her adrenaline levels low and advised her to rent an AED and take it with her wherever she went.
“I had to carry one of those around with me whether I was in the house or going out to see friends,” Rock-Torcivia said. “I was really worried that something would happen, [that] I would be unconscious and my friends would not know how to use it.”
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Doctors at New York-Presbyterian Hospital later diagnosed her with ventricular tachycardia, an abnormal heart rhythm, and scheduled surgery for the first week of March 2020. The family was excited. The procedure has a high success rate, said Kiersten’s mom, Deirdre Rock, and her daughter wanted her life back.
Instead, they hit another bump in the road. Surgeons were expecting to find “an extra electrical pathway” in the girl’s heart that they could surgically close. Instead, they found one problem spot after another that triggered more arrhythmias.
What was supposed to be a one-hour surgery stretched to four hours. On the way home from the hospital, her parents explained things hadn’t gone as planned. Each time doctors had closed down one malfunctioning pathway, another was discovered.
“They got to the point where they realized there were so many popping up, it was not going to help,” Rock-Torcivia said. “That’s when they realized it was something even more serious.”
The Morris teen skated with a private club, Team Image, based in Westchester County, New York. The squad was getting ready to attend the national championships.
After the operation, reality set in: She would not be returning to the fray.
“I really wanted to skate at Nationals, which is the big competition,” she said. “We would drive up to New York for practices and I would sit on the side, on the bench and watch all of my friends skate.”
Doctors at New York-Presbyterian referred the family to Boston Children’s Hospital for genetic testing. They finally came up with a diagnosis: Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy, or ARVD/C.
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ARVD/C is an inherited condition in which portions of the heart muscle are replaced by fatty tissue, disrupting electrical signals, according to Brigham and Women’s Hospital in Boston, which says the disorder affects from one in 1,000 to one in 5,000 people. A 2013 study by researchers at Johns Hopkins University found frequent, vigorous exercise significantly raises the risk of developing symptoms.
The family had an answer just as the coronavirus pandemic was shutting down the world around them. Rock-Torcivia said she felt isolated as the pandemic raged on, cut off from her teammates and no longer able to do the exercises and physical activity that filled her days for so many years. Blood pressure medication slowed her down as well, leaving her fatigued.
Still, she went to cheer for her teammates when she could. Before competitions, she would do one warmup lap with them and head back to the bench.
“I stepped off the ice and watched them. That was heartbreaking. But I wanted to support them, so I drove all the way up there to sit and watch,” she said. “It was a dream of mine to be on that ice. I worked hard for it.”
Rock-Torcivia’s condition has altered her plans for college and beyond. She’d been considering schools in Boston or upstate New York, to be near major ice-sporting centers.
Now, she knows she’ll need to study near a major hospital, one staffed with a medical team familiar with ARVD/C.
ARVD/C is also shaping her career plans. Rock-Torcivia is thinking more about the medical field, perhaps becoming a doctor or nurse. She said the revelation came to her as she bounced from one hospital and doctor’s office to another: She wants to help people.
She started a charity, Heartfelt Harmonies, to help children dealing with serious illnesses. It provides pediatric hospitals with little bags containing earbuds and a code to access the relaxing Spotify playlist that helped her get through medical visits.
“When I was in the hospital, there was a lot of beeping and people walking around and talking,” she said. “It was very stressful to hear all of that, so I would put in my earbuds and listen to music to block it all out.”
She raises money for the kits through donations and through sales of pictures taken by her grandfather Bob Rock, an award-winning photographer, in his native Ireland. Her last fundraiser generated enough to donate an AED to the Boys & Girls Club of Newark.
She will have more photos available for sale between 1 and 6 p.m. on Sunday at the White Meadow Lake clubhouse in Rockaway Township. She’s hoping to raise enough this time to donate an AED to the nonprofit Oasis Haven For Women and Children in Paterson.
In September 2020, doctors implanted an internal cardioverter-defibrillator in Rock-Torcivia, a device designed to shock her heart back into rhythm if it goes haywire again. It’ll need to be replaced every eight years, Deirdre Rock said.
It’s a part of her life now, her daughter said, and she’s determined to work with it.
“Being an invisible condition a lot of people don’t understand that it is something I deal with every day,” she said.
Gene Myers is a reporter for NorthJersey.com. For unlimited access to the most important news from your local community, please subscribe or activate your digital account today.
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It was two days before Christmas 2019, when she felt it.