Meet the Qld boy born with half a heart defying all the odds

Harley Rigby’s mum says he is a little heartbreaker. But the Brisbane four-year-old was himself born with a broken heart. But he’s nothing if not a fighter.

Harley Rigby’s mum says he is a little heartbreaker.

But the cute Brisbane four-year-old with the cheeky grin and blond hair was himself born with a broken heart.

At just five days old Harley was diagnosed with hypoblastic left heart syndrome, a rare and life-threatening heart condition where the left side of the heart is underdeveloped and struggles to pump enough blood to the body.

Harley has survived two open heart surgeries at the Queensland Children’s Hospital, 10 hospital admissions and countless medical emergencies.

Harley Rigby has had two open heart surgeries. Photo: Steve Pohlner.

His mum Lisa McColl was told that her newborn would likely never meet his milestones and life would be tough. But no one could have guessed that Harley actually had the heart of a lion and is a normal four-year-old boy who is active and funny.

The only signs of his tough health journey is the scar hidden under his shirt and how he struggles for breath when his energy levels soar.

“I am so proud of Harley, he has come through his treatment so well. I call him the ‘poster child’,” mum said.

Harley had his first open heart surgery at five days old and the second at four and a half months.

Harley Rigby with his mum Lisa. Picture: Steve Pohlner

“It may sound strange but I found the second surgery more traumatic. I was a first time mum at 26 so his first surgery in his first week of life was a whirlwind, a blur. By the second operation I had become so close with Harley I was so stressed. When he woke up from the anaesthesia he became so distressed by his intubation that I still have PTSD over that day.”

Harley faces another surgery in the near future.

“I really hope it is his last. Most children with this condition will go on to need a transplant but medical procedures are improving every day and it all depends on the child. But for right now Harley is doing great and we are very grateful for his medical teams,” Lisa said.

The family rented a home within 15 minutes of the QCH from when Harley was a newborn until he had his second surgery which allowed him to have “home monitoring”.

“I looked after him and took his obs and became very familiar with this medical needs. But for his next surgery we will not be living within the 15 minute distance criteria for home care so we will rely on the services of Ronald McDonald House. This is so invaluable. When a child is in intensive care you need to be close by,” Lisa said.

■ Critical funds for Ronald McDonald House will be raised with Queensland’s first overnight 42km walking marathon in October.

Originally published as Meet the Qld boy born with half a heart defying all the odds