The worst moment in the lives of Charlie’s parents was seeing their three-month-old baby go into cardiac arrest in front of their eyes.

Kate had an uneventful pregnancy and birth with Charlie. The only difference, compared to her other two children, was that Charlie was smaller than his brother and sister.

He ate little and didn’t grow much. So after three months he was admitted to Canberra Hospital to be, as his mum put it, “fattened up”.

As it turned out, Kate says, “If we’d waited another week, Charlie wouldn’t have survived”.

Charlie’s heart had swollen to four times its normal size. He was suffering from end-stage heart failure.

Charlie was rushed to The Children’s Hospital at Westmead in Sydney by helicopter. He was found to have various congenital heart diseases including hypoplastic aortic arch and multiple large holes between the two lower chambers in the heart, called ventricular septal defects (VSDs).

For 10 hours the surgeons operated. And for 10 hours his heartbroken parents waited anxiously for news.

As their baby was wheeled out of surgery, all the alarms went off. Charlie was having a cardiac arrest.

“The scariest thing was watching them do CPR on our tiny baby. Then they wheeled in the heart-lung machine. Then suddenly, his tiny heart started beating again,” says Kate.

In Australia, 1 in 100 babies are born with congenital heart disease (CHD). In most cases, a genetic diagnosis is not made.

That’s why – with your help – scientists at the Victor Chang Cardiac Research Institute are trying to understand the full genomics of CHD to work out its causes and the risk of recurrence.

In cases where a mutated gene causes more than just heart defects, knowing exactly what the gene mutation is helps clinicians manage those other conditions. This is especially important in those cases where some of the effects of the mutation can only be seen later in life.

Charlie is now two and a half. His parents try to treat him just as they treat their other children, but they – understandably – can’t help but be a little protective.

The more we know about congenital heart disease, the more we can do about it. That’s why your support is so important. The work you help fund at the Victor Chang Cardiac Research Institute aims to deepen our knowledge of congenital heart disease, because it is only then that treatments, cures and ways of preventing it can be found.