In December 2024, my daughter was diagnosed with a rare heart condition, CPVT. What was an earth-shattering, terrifying moment also brought us comfort and answers that we had been searching for so long.
Evie was 5 when she unexpectedly had her first seizure, there seemed to be no reason, no previous episodes or concerns around her heart. But in that moment, she went down while at home safe with me. She recovered quickly and seemed almost perfectly normal following the episode, but that opened a door to so many unanswered questions. We were told ‘every child can have one seizure’, even though she was usually fit and well, there was no temperature, no other explaining factors, all tests came back normal, it was deemed okay.
When she was 6, it happened again, but this time during exercise. We were referred back, and the consultant was adamant it wasn’t anything brain-related and referred us to a heart specialist, but the wait list was long, and the path was scary. More seizures and unexplained episodes, constant worry and eyes on her, keeping her calm, avoiding overstimulation, overwhelm, and over excitement.
She’s always been cautious, needed extra reassurance, wanted to join in with activities or hobbies, but something was always holding her back. She’s become more and more anxious the older she gets to a point where everyday tasks like going to school needed a lot of reassurance.
There was never 1 answer, but I always knew something wasn’t right, I knew she needed my full attention, I couldn’t let her run off and play in a soft play or play park, I’d be there by her side, knowing something could go wrong. My gut was saying to push forward and get answers.
14 months after the first seizure we managed to get an appointment with a consultant who had a keen interest in hearts, he spotted that something wasn’t adding up and had heard of CPVT and how discreet the symptoms can be. Fainting or seizures during exercise for no explained reason, anxiety around physical activity or in overwhelming situations, anxious traits but all test coming back clear, including what appeared to be a perfectly healthy-looking heart. He acted quickly by putting a 48-hour heart monitor on Evie so he could track her daily activity, this monitor showed irregular heart rhythms during a normal day at school.
We were referred to the heart unit in Newcastle, where they shared the same concerns. They rigged her up to a heart monitor and asked her to run up and down a corridor. This exercise test showed her heart going into runs of ventricular tachycardia (VT) during physical activity which when increased as her body wanted to slow down and the emotion set in. The combination of physical exertion and emotional toll causes a surge of adrenaline and the CPVT shows its self.
Evie has had the condition her whole life, and other than a gut feel and the onset of seizures, we would have never suspected her to have a rare heart condition. It’s laid silent and crept up in the most subtle way.
We’re so grateful we had the warnings that we did, the knowledge and expertise of a consultant who agreed with us as parents that something wasn’t quite right, the persistence to follow our gut and get answers to unexplained questions and now the support to of Evie’s incredible cardiac team at the Freeman Hospital.
I remember one day, I’d researched potential cardiac conditions and CPVT came up, I didn’t know the severity of the condition at the time but I knew the symptoms seemed to fit the way Evie was presenting like a glove. Once we had the diagnosis and left the hospital, I was reviewing my notes and saw that I’d typed ‘ask about CPVT’. I hadn’t actually ever had to mention it, as once we were in front of the right people, things moved quickly, and we got a diagnosis. But I do believe that no one knows their child better than a parent.
Written by: Lisa Stewart
Photo © by Vlad Fratila’s Images.