Lleyton's Life-Saving Luggage
While most 7 year old children carry their lunch box to school, Lleyton Barrow carries something even more important, a machine that could save his life. The out-going Christchurch youngster was born with Tetralogy of Fallot, a combination of four heart defects, along with Long QT syndrome, a heart condition that could cause him to go into cardiac arrest at any stage.
While he has had multiple heart surgeries for Tetralogy of Fallot, Long QT syndrome means he has to carry around a portable defibrillator wherever he goes.
Lleyton’s mum Claire says it does have its challenges. “We always have to make sure whoever he is with knows how to work the defib. School is not a problem because he has a teacher aid who is constantly with him, but it can get pretty scary for new friends who invite Lleyton for play dates. We just reassure them that we’ve never had to use it yet, it is more a safeguard, but it’s still pretty daunting for them.”
Lleyton’s heart journey began when he was in utero at just 20 weeks. Claire received the news that her first born would be a heart child but also have a club foot. “I was petrified. It was the fear of the unknown,” she explains. She was able to give birth in Christchurch and Lleyton was able to stay in the Neo Natal Unit. “We were told that he’d probably need an operation in 6-8 months, but at just 10 days old he took a turn for the worst. Lleyton ended up having a full repair for Tetralogy of Fallot at just 6 weeks. We came home on Christmas eve.”
Since then this brave little battler has undergone multiple cardiac catheter procedures, a stent implant and the replacement of a valve. As he grows he’ll need further surgeries.
While he tires more quickly than other children Lleyton does his best to keep up. Claire says he loves his scooter and has just this year finished his first season playing cricket. “He used to struggle with confidence but after meeting a few of the Black Caps over summer, he’s really found a new passion.”
New Zealand Cricket are big supporters of Heart Kids and during the summer many heart children had the opportunity to meet with and be the flag bearers for the team during their summer fixtures. Lleyton was one of those lucky kids.
Claire says another thing he’s looking forward to is the Heart Kids annual camp. “Lleyton will be 8 years old by the time the next camp rolls around in January and he’s really excited.” He’s heard all about the camp from Claire, who herself attended when she was a teenager.
Claire was also born with Long QT syndrome, but it wasn’t discovered until she suffered two cardiac arrests, the first when she was 10yrs and then another at 13yrs. She now has an internal defibrillator. Just over two years ago, following the birth her second baby, geneticists discovered she carried a rare gene, only found in one other family in the world. It’s called the Long QT Type 8 gene (CACNA1C), and not only does Lleyton and sister Lilian have it, but so do Claire’s two brothers, father and a number of other family members. Doctors now believe it also goes a way to explaining a number of unsolved deaths in the wider family.
But while the specialists work on solving genes … for Claire, it’s all about taking one day at a time. Since Lleyton’s diagnosis Heart Kids has been beside her. “They’ve always been there, providing emotional, practical and financial support. The hardest part about being a heart parent is the unknown, so to have the family support workers on call is extremely comforting. They’ve also introduced us to other heart families.”
Claire is now a family support worker herself in Christchurch and it’s her mission to help other heart families like hers.