Bray from Billericay is just 12 years old but has already undergone surgery at Royal Brompton Hospital to cure his congenital heart disease. This World Heart Day, Mum, Kelly, shares the family’s story and how a faulty connection in Bray’s heart has led to the family creating a lasting connection with staff at Royal Brompton.
At 6 months old, Bray was diagnosed with a congenital heart condition, Wolf-Parkinson-White syndrome (WPW). This condition causes the heart to beat abnormally fast for periods (known as supraventricular tachycardia, SVT) of time due to an extra electrical connection in the heart. Bray was prescribed medication to lower his heart rate and help control his symptoms, but he was still being blue-lighted to hospital once a month with SVT.
“We used to say Bray was our little ticking time bomb,” says Kelly.
At eighteen months old, Bray was referred to Dr Jan Till, consultant paediatric electrophysiologist and divisional director of children's cardiac services at Royal Brompton Hospital. This was also when the family first met Catherine Renwick, consultant nurse in paediatric electrophysiology and inherited cardiac conditions.
“This changed our lives! There were far less ambulance trips to the hospital as his symptoms were better controlled. Bray began to thrive. We never looked back after meeting Dr Till and Catherine.”
Bray’s medicine dosage had to be adjusted every few years as he got older and bigger, and he continued to have two check-ups every year with Dr Till or Catherine Renwick. As the family lived in Billericay, Essex at the time, this meant Bray would have to take time of school so they could travel to London.
“It was frustrating for Bray as he loved school and hated having his blood taken. But thankfully we knew that Dr Till and Catherine were giving Bray the best possible care.
“We always tried to play down the condition to Bray and turn the negatives into positives, like the fact that he was diagnosed early, it was better knowing about his condition than not, and we were lucky with the excellent care he was receiving from Royal Brompton. After all, the only thing WPW would stop him doing was becoming an airline pilot or deep-sea diver.”
Luckily, instead, Bray developed a keen interest in ice hockey and when he was worried his WPW would prevent him from playing, Dr Till wrote a letter to Bray’s ice hockey club assuring them, and him, that it was safe for Bray to play.
When Bray turned 12, Dr Till suggested he was old enough to have an ablation to cure his WPW and prevent him having to take medication all his life. An ablation uses radio waves, emitted through a tiny tube inserted via the veins into the heart, to remove the extra electoral connection in the heart causing the abnormal rhythm.
“Bray never let his WPW stop him, but he did always feel different. So, although he was nervous about having an ablation, when the family had the opportunity to relocate to Canada through Bray’s dad’s work, Bray agreed to have it, knowing that he would be in safe hands at the Royal Brompton.”
In May 2021, on the day of the operation, aged exactly 12 and a half, Kelly texted Heart FM Radio to give a shout-out to the catheter ablation lab staff and wish Bray luck. After the successful operation, the first thing Bray said to his mum was, “There were so many people involved, how can we ever thank them all?”
Two months later and Bray’s ECGs are still normal with no signs of his WPW. The family are now living in Montreal, Canada and Bray is loving all the ice hockey.
“Saying goodbye to Catherine at Bray’s review before our move to Canada was very hard. She has been a huge part of our life for the past 11 years. We can never thank her and Dr Till enough, but they would always say, ‘We’re just doing our job’. I don’t think they realise how much they are changing people’s lives, giving them hope and really making a difference.
To all the families and children with recent diagnoses of heart disease, Bray says, ‘No matter what, you can’t let it stop you’.”
Royal Brompton and Harefield hospitals’ electrophysiology service provides care for patients with all kinds of arrhythmia, including WPW syndrome. Working closely with colleagues in paediatric cardiology, adult congenital heart disease and cardiac transplant, a high-quality specialist arrhythmia service is provided for both adult and paediatric patients.
Kelly says: "Eleven years apart, same ward, same hospital, same excellent care!"