Six-year-old Jonathon George battles hypoplastic left heart syndrome

A Queensland mother has shared the devastation and trauma of watching her beautiful baby boy turn blue and nearly die in her arms before he was rushed in for emergency surgery on his walnut-sized heart.

Jonathan George. Picture - contributed.

A Queensland mother has shared the devastation and trauma of watching her beautiful baby boy turn blue and nearly die in her arms before he was rushed in for emergency surgery on his walnut-sized heart.

Diagnosed at just three days old with hypoplastic left heart syndrome, a rare heart condition where the left side of the heart is critically underdeveloped, making it unable to pump blood around the body correctly, Jonathan’s journey has been anything but easy.

His mother, Jess George, said the time between first holding her baby boy at the Sunshine Coast University Hospital and watching his tiny blue body be taken away for surgery at Mater Hospital in Brisbane was a whirlwind.

“We had normal skin to skin after his birth and it was beautiful … we didn’t think anything was wrong,” Mrs George said.

“But then he stopped feeding and his oxygen saturation dropped rapidly.

“He went blue. Under his eyes was very dark and his lips were so white and pale. It was like nothing I’d seen before.

“His oxygen saturation was at 75 per cent. A normal person is at 99 per cent.”

Glenn, Liesel, Jonathan, and Jess George. Picture – contributed.

Jess and Glenn George, of Wamuran, were rushed to Brisbane for a series of scans and tests.

Mrs George said she was sitting in the clinical hospital room with her husband at 2am when the cardiologist delivered a devastating diagnosis.

“He explained how severe the condition was and how half of his heart, the left side, hadn’t developed properly,” she said.

“If he didn’t go in for surgery it would kill him.

“But also the surgery had a 20 per cent mortality rate and nothing was certain. The other option was palliative care.

“Making that really important decision right then and there was hard but for us we wanted to give him a chance. There is nothing we wouldn’t do for him to live.”

The first open heart surgery was successful, despite a sepsis scare, and another followed when Jonathan was about six months old.

“After his second surgery he had so much more colour and energy like a normal baby,” Mrs George said.

In September 2019, the George family were finally able to return home.

“It was a big journey for us. I had suffered PTSD and post natal depression from it all combined with having a newborn baby at home and trying to give him from getting sick again,” Mrs George said.

“Thankfully we had a lot of medical help and support so he didn’t fall behind in development.”

In February this year, five-year-old Jonathan had his third open heart surgery.

Liesel and Jonathan George Picture – contributed.

“We kept him back from starting prep for it. He’s recovered really well and most people wouldn’t even notice he had a problem with his heart,” Mrs George said.

“He’s such a smart, cheeky, and energetic kid.

“He loves paw patrol, running around, playing outside, climbing and jumping on things, and superheroes. He’s just your typical little boy.”

But underneath his invasive surgery scar little Jonathan is harbouring an indefinite, but inevitable, heart failure.

“His last heart surgery will eventually fail and he will one day need a heart transplant,” his mother said.

“Sometimes it’s in a few years sometimes it’s when they’re well into their 30s. At this point we just don’t know.

“Day to day he might get a little bit puffed but he knows about his condition and he know his limitations.

“We’ve told him he has that big scar because behind it he has a special and very brave heart.

“It’s important for him to understand he’s different. We try to teach him to embrace how brave he is and how much he’s already overcome.”

Now, the George family is asking Queenslanders to help other sick kids like Jonathan by supporting the Children’s Hospital Foundation’s Small Change Appeal, supported by Woolworths.

From 18 September to 8 October, Woolworths customers across Queensland and northern New South Wales can make a difference by purchasing a $2 wall token at serviced check-outs.

Originally published as Six-year-old Jonathon George battles hypoplastic left heart syndrome