'We were told we were more likely to be struck by lightning than have another 'heart baby'.'

“If someone could have reached into my chest and pulled out my heart, stepped on it, done everything to it, ripped it up into a million microscopic pieces – that’s what it felt like.”

Lisa Paisely, 38, has had to wave her babies goodbye as they’re wheeled into surgery eight times too many.

Lisa and her husband Aidan, 28, “drew the short straw.”

Despite being told they were more likely to be struck by lightning than have another ‘heart baby’…they got struck.

Xander, 28 months, and his little sister Scarlett, 15 months, were both born with congenital heart disease.

Eight babies are born in Australia every day with the disease. It’s the biggest childhood killer.

Jimmy Kimmel on his son’s heart disease. Post continues after video.

“I knew about heart disease, but I didn’t know it affected babies. I didn’t know any of this existed until I had to. It opened my eyes up to a whole new world of illness,” Mrs Paisley told Mamamia.

The Paisleys were told of Xander’s possible diagnosis when he was still in the womb.

“I had a 13 week scan and it looked like his heart wasn’t developing properly. They said by the 19 week scan it may very well correct itself. It wasn’t until our 19 week ultrasound that they confirmed, but we didn’t get an official diagnosis until he was born,” explained Mrs Paisley.

Lisa was told to “enjoy the rest of her pregnancy” but it was searingly difficult, knowing her baby was going to struggle with life from the moment he was born.

“It was life-shattering,” she said.

After Xander was born he was whisked away from Lisa after spending just 30 seconds on her chest, and taken away to the Neonatal Intensive Care Unit (NICU) for tests, and then the nearby Westmead Children’s Hospital for more tests.

She didn’t get to see him until the next day due to afterbirth complications. “I was dying to see him. It was the longest day of my life.”

Xander was only four months old, and two months away from major surgery when Lisa felt the familiar signs of pregnancy.

While Scarlett was a pleasant surprise, Lisa was beside herself.

“I didn’t know how to be pregnant while I was terrified for my [other] child’s life. I almost pushed being pregnant to the side to focus on Xander,” she admitted.

Besides, what did she have to worry about? She was pretty confident she’d have a happy healthy baby. She’d been told it was very, very unlikely she’d have another child like Xander.

“But we got thrown a curve ball and life changed again. We were floored,” said Lisa, of the moment they were given Scarlett’s diagnosis.

The cardiologist was forced to apologise to the family, but the Paisleys knew it wasn’t warranted. It was random selection.

Scarlett's condition is even more complex than her brother's. While he had his major surgery at one year old, she was already on the operating table at four days old.

Xander's condition is now manageable, apart from check ups for his pacemaker, but Scarlett is on four medications a day - and is restricted from doing a lot of things like swimming or flying because of her low oxygen levels.

The Paisley kids will have their disease forever, but they are more than their conditions.

"We need more gentle kind men in the world, and strong independent women. I have the best of both worlds," said Mrs Paisley of her two children's personalities.

There is no real life expectancy for her children's future, but that's because those who have had similar surgeries are only 40 years old now.

Promisingly, HeartKids just received $26 million dollars in government funding to go towards research and finding a cure, along with support for families living with heart kids.

"I look at what I have done in my 38 years and think 'I hope to god they get here'," said a hopeful Mrs Paisley.

The Paisley family are hosting a HeartKids fundraiser at a 'What Men Want' screening at Event Cinemas Top Ryde tonight, to join the 92 others already going, register here.