After Xavier made it through open-heart surgery with flying colours, his family counted their blessings and took him home. But three weeks later, Xavier was rushed back to The Royal Children’s Hospital, where he went into cardiac arrest on the operating table on his sixth birthday. Now the Warrnambool family share their heart-wrenching story.

Xavier was five months old when he was diagnosed with Kawasaki disease, which led  to two dangerously large aneurysms forming on his left coronary artery.

Rodney and Hayley Grant spent the next 5½ years living on edge, fearing any big knock or fall could cause a fatal ­ruptured aneurysm.

“Normally, your artery measures 4mm in diameter, and the large aneurysm was 13mm in size,” Mr Grant said.

Simple childhood pleasures became a minefield – trips to the local playground, play dates with friends, starting kinder.

In late January, Xavier had to have open-heart surgery of a type that his cardiac surgeon, Stephanie Perrier, said was rare in children.

“He had a blocked coronary artery, and I had to perform coronary artery bypass grafting, which is quite unusual for a six-year-old boy,” Dr Perrier said.

“Usually we do this operation for smoking adults or adults with cardiovascular risk. It was very straightforward and he was doing super well, and just after a few days, he could be discharged. He was super strong and had a quite fast recovery.”

After returning home to Warrnambool, the superhero fanatic and his family were preparing for his first day of prep on February 12 with much excitement.

His school uniform was out ready.

The Grants had met with Xavier’s teachers.

Big sister Sienna, 9, was looking forward to having her little brother at school, Mrs Grant said.

“He was ready and raring to go!” she said. “He was just so excited, every plan was in place, the school had just gone above and beyond for Xavier.”

But just one day before, Xavier fell ill and his parents took him to emergency.

Xavier had to be flown to the RCH, as the Grants tried to keep their emotions in check. The next day, in what turned out to be the calm before the storm, doctors decided to drain the fluid off Xavier’s left lung.

“It was going to be an easy 40-minute procedure and maybe three days on the ward, and hopefully we’d be back home again,” Mr Grant said.

“We thought, ‘He’s just had open heart surgery three weeks ago. This will be a breeze, this little procedure’.”

Mr and Mrs Grant had a coffee in the hospital while waiting for Xavier to have his procedure, when Mrs Grant’s mobile phone rang.

“It was the surgeon, Stephanie, and she sounded very distressed, and she said, ‘Where are you? I need to see you straight away’,” Mr Grant said.

“We’re like, ‘OK’, and she says, ‘Now!’”

The couple ran through the hospital to meet the surgeon just outside the operating theatre on the third floor, as Xavier lay metres away still under anaesthetic.

“I remember just seeing her very stressed and pacing, and the fellow (another doctor) looked like a deer caught in the headlights, like he’d seen a ghost,” Mr Grant said.

What came next was every parent’s worst nightmare.

“Stephanie said, ‘We’ve just had a little bit of a minor complication; once I made the ­incision to put the drain in, he actually went into cardiac ­arrest,’” Mr Grant said.

“She said, ‘Once I made the incision there was that much fluid that came out of him, his pressure dropped instantly and we had to perform CPR for 30 seconds.’”

Mrs Grant said she could not believe what she was hearing. “He’s just had open-heart surgery, he’s just done the biggest thing of his life, eight hours, and he’s not cardiac ­arrested,” she said.

“How could his heart stop with something so minor, we thought at the time, compared to open-heart surgery?

“We never in a million years thought she would have told us that.”

There was one more frightening piece of bad news – ­Xavier had developed a dangerous build-up of fluid around the heart that needed urgent ­removal.

“We just said, ‘Do what you’ve got to do – you’re the expert,” Mr Grant said.

Mrs Grant remembers sobbing and hyperventilating as she begged the surgeon to do whatever it took to save her boy’s life.

“I just said, ‘Bring back my cheeky boy. I don’t care what you have to do. Just bring him back to us’,” she said.

The next hour and a half was the “longest of our lives”, Mr Grant said.

But the surgery was a success and Xavier is now on the mend.

The family has since learned Xavier suffered a rare complication after his open-heart surgery, which led to the terrifying experience..

Dr Perrier said while Xavier’s cardiac arrest was unexpected, it was a situation doctors were very experienced in handling.

She said the anaesthetist needed to perform a few compressions.

“But it was very quick and he recovered very quickly,” she said. “There was fluid around his heart that was impairing the good functioning of his heart. That’s why he arrested.

“So I had to insert a little tube in the pericardium, the space between the heart and the pocket that contains the heart, to drain that fluid, and once that was drained it was much better.”

“Superboy” Xavier finally arrived for his delayed first day of prep this week, and has quite the showstopper for show-and-tell should he ever need it.

Meanwhile, his parents are happy to put the heart-stopping episode behind them.

“What kid can say that on their birthday they were in ICU and cardiac arrested?” Mrs Grant said.

Xavier is one of the tens of thousands of Victorian kids who will benefit from this year’s expansion of the Good Friday Appeal’s funding to hospitals in the regions, including Warrnambool, so sick children can get world-class care close to home.

The Grants sometimes leave home in Warrnambool at 4.30am for an RCH appointment. “For kids to have access to brilliant services like we have here at the RCH down home would be amazing,” Mrs Grant said.

The family will be forever grateful to the RCH for saving Xavier’s life.

“Xave wouldn’t be here if not for the quality of doctors like (cardiologist) Lucas (Eastaugh) and Stephanie,” she said. “Until you’re there, you don’t realise how amazing that place is. For the Good Friday ­Appeal, that money is going to the best of the best.”

Dr Perrier said she was “completely amazed” by Xavier’s courage in facing up to his challenges. “I think the future is bright for him,” she said.