Kaveri didn’t have any indication that something was wrong with her son’s heart – until he experienced Sudden Cardiac Arrest (SCA) during a band gig in 2024. Kaveri learned that her son has an extremely rare cardiac condition called Short QT Syndrome (SQTS). She’s sharing her story to help spread awareness of this ultra-rare condition – and let other families with a SQTS diagnosis know that they’re not alone.
In June of 2024, Kaveri’s son was playing guitar as part of a rock band at a restaurant. While Kaveri was in the back of the restaurant grabbing food, her son collapsed as he was performing. His little sister, who was taking a video of him, came back to get her mom, telling her mom that her brother “wasn’t on the stage anymore.”
“Before that moment, there had never been an indication that something could be wrong with him, so I wasn’t concerned,” she says. “I saw someone on the floor of the stage. I still didn’t register it was my son till I saw what he was wearing.”
Her son was unconscious; his eyes were droopy. Someone told Kaveri that her son was having a seizure; they called 911, and a nurse who happened to be in the audience started performing CPR. When the ambulance came, they shocked her son with an AED.
“Nothing made sense to me,” said Kaveri. “He’s my healthy boy, and then he’s on the ground, and all the sudden his heart is being shocked. It was like a nightmare. Everything moved so fast.”
After Kaveri’s son stabilized in the hospital, she and her husband visited him; but he started to seize again. The doctors moved him to a bigger hospital center after noticing his heart rate was irregular. “He was in sustained ventricular fibrillation, and getting worse,” says Kaveri. “They had to shock him so many times that my husband and I didn’t know if we would survive the night.”
Because her son had been shocked so many times, he was put on ECMO – a machine that takes over the heart and lungs to give them a chance to rest and heal. After stabilizing, he was moved New York University’s hospital. That’s when he was assigned a pediatric electrophysiologist, who informed his family that he has Short QT Syndrome. The “seizure activity” that had been occurring was actually Sudden Cardiac Arrest.
Her son’s SQTS treatment includes the medications Quinidine and Sotalol as well as an ICD. Kaveri’s son has also developed a dropped foot condition due to being on ECMO, and is currently in physical therapy and a brace in hopes of correcting the issue.
“My son has showed tremendous strength,” says Kaveri. “He has moments of ‘why did this happen to me,’ especially since his condition is so rare, and we don’t really have an answer to that. But we were lucky for the help and medical care we’ve received, and that people around us jumped into action when he had his SCA. We’re learning his new limits, and as parents, trying to balance letting him do what he loves against the risk of those activities.”