Chloe's story of Cardiomyopathy
I wish you could meet Chloe.
I’m sure you’d love her. In many ways she’s a typical three year old girl who adores her dolls, play dough, painting and changing her outfit at least seven times a day.
But there’s an important difference between Chloe and other kids her age. She’s smaller, and a lot slower.
She tires quickly and can’t really keep up, especially if it involves running around.
You see Chloe was born with a serious heart disease called cardiomyopathy. The muscle of her heart is huge, thick and stiff. It doesn’t work properly.
Her mum and dad are desperately afraid – with good reason – that Chloe might be one of the four Australian children who die of heart disease every week.
Chloe’s situation is heartbreaking for her parents Michelle and Dean.
“I’m afraid when I put her to bed at night. I can’t help but wonder each time whether she might not wake up in the morning.”
Michelle says that as Chloe is growing up, she is finding her inability to do things increasingly frustrating.
“Why can’t I jump for a long time like the other kids?”
“Why can’t I hop too?” she asks her mum.
“Why do my legs get so sore I can’t even walk around the supermarket?”
“But how do you tell an almost four year old she has a sick heart?” Michelle ponders.
Chloe was diagnosed at 18 months of age after a routine checkup.
She was immediately sent to a paediatric cardiologist, who after a week of testing declared that Chloe’s heart, “looked atrocious – like someone who had been taking steroids”, remembers mum Michelle.
“It was so bad he wouldn’t even let us go home – he sent us straight to the Emergency Department. We were still in our gym clothes.”
“We were in shock. It was utter disbelief! The doctor told us not to google it, but we did, and it was … terrifying.”
“Over time her heart will just get thicker and bigger. First she’ll have to have medication, then beta blockers, then inevitably a heart transplant.”
“It’s a waiting game. Every appointment I just hold my breath, hoping it hasn’t got too much worse.”
Chloe’s condition is closely monitored. She has an echocardiogram every couple of months to make sure her heart isn’t becoming obstructed. Her condition is genetic. It stems from a mitochondrial disorder that most likely both parents – unknowingly – carry.
Some forms of cardiomyopathy are not uncommon. They occur in one in 500 people and can affect people of any age. Currently in Australia there are 32,000 children living with ‘sick hearts’.
Unfortunately, because some people don’t experience any symptoms, the first sign can be sudden death.
In fact cardiomyopathy is the main cause of sudden cardiac death in children and young people.
Acknowledgement of Country
The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.
