Meet the heart kids who show true grit
Chloe Green, 9, bristled when asked if it was comforting to be surrounded by so many kids at camp with a congenital heart condition like hers.
“It doesn’t really mean anything, it feels the same because we’re just normal people,” Chloe said defiantly from Auckland Heart Kids Camp in Henderson Valley this week.
“We just talk about what you would normally talk about with your friends: like your personality, and what you like.”
But Chloe and the other kids also share a rather remarkable scar, which they compare with pride at mealtimes.
The “zipper” scar, descending down each chest, is a mark of open-heart surgery at some point in their young lives.
She is one of three kids from a small Canterbury school who live with a congenital heart condition.
Maddie Gascoyne, 12, Lleyton Barrow, 9, and Chloe all travelled up from the 11,000 strong town of Kaiapoi just outside Christchurch for the camp this week.
Kaiapoi North principal Jason Miles called them as “remarkable”.
“They are very resilient, very courageous children, and they certainly do their best not to make their condition known to people. They just want to try to get involved with everything in the school,” Miles said.
While the teachers didn’t emphasise the trio’s condition to fellow students, other kids were aware.
“The other students know if they are changing colour, they need to let an adult know, but the teachers have some special sessions with the health nurses, and there is a teacher aid that is assigned to Lleyton — they monitor him constantly throughout the day. But the other students don’t treat them differently. Maddie is one of our top sports students.
“I think the fact they have the challenges makes them more keen to get involved in life.”
Lleyton exudes the same spirit as Chloe. The grade 5 pupil has tetralogy of fallot and long QT syndrome — a heart condition that could cause him to go into cardiac arrest at any stage.
He has to carry a portable defibrillator with him in a backpack constantly, before he is old enough to have a pacemaker.
“We have my defibrillator just in case I faint, then we use it to get my heart going again. I have to carry it all the time, everywhere,” Lleyton says matter-of-factly.
His indifference to the gravity of the lifesaving device suggests it has always been a routine accessory of his life.
“Basically everyone in our group has a zipper. I do, Seth does, Chloe does, Aiden does. My Mum doesn’t,” Lleyton says.
Heart Kids Camp spokeswoman Anna Thomas said a doctor and four nurses were on site during the five-day camp.
“It’s the most amazing thing.
The comment from most of the parents, they all say ‘these kids used to be the different one in their group and here we are in this camp and we’re all the same,” Thomas says.
“So they’re taking off their shirts and really proud, and ‘oh, look at mine, mine’s bigger than yours’.”
Maddie, who is in year 8, said she only discovered her two Kaiapoi North schoolmates they also had heart conditions after seeing them at a Heart Kids gathering in Christchurch.
Maddie, like Chloe, was born with atrial septal defects (ASD), which is a birth defect that causes a hole in the wall between the heart’s upper chambers: the atria.
More so than her younger classmates, Maddie has appreciated the experience to mingle with kids who can relate to the medical trials she has experienced.
“It’s quite cool because you know you’ve been through what they have, and it’s cool to catch up with some of the friends you’ve met the year before,” Maddie says softly.
“I don’t often do stuff like this, meeting everyone. It’s nice.”
They are very resilient, very courageous children. Principal Jason Miles