New heart register is a hole lot of help

IT’S the biggest killer of babies in Australia. And Natalie Reeves knows she is lucky to have survived well past her teens.

At 18, she learnt she had a hole in her heart the size of a 50c coin that required lifesaving surgery and would leave her with little chance of having a normal life.

“In my case the hole was so large that it did indeed require surgery to correct it as soon as possible, as it was placing far too much strain on my heart,” the Sydney mother (pictured) said.

“The last thing I expected at 18 was to prepare for open heart surgery.”

Ms Reeves, 42, is one of thousands with congenital heart disease (CHD) now living a healthy life who would once have been lucky to reach their teens.

These “pioneering survivors” have led doctors to create the first Australian

New Zealand Congenital

Heart Disease Registry.

Twelve hospitals treating people with CHD across Australia will take part in the national registry, which will help medical experts understand the disease better, track its prevalence and the outcomes of people living with the condition.

Clinical director of the Heart Research Institute Professor David Celermajer said the registry would monitor a patient’s medical needs as well as other areas, including if they finished school or suffer mental health issues.

Prof Celermajer said the information would be critical in planning support services for patients, including organising psychologists and finding NDIS places.

Eight babies are born with CHD each day and an estimated 2400 babies are affected in Australia each year.

Prof Celermajer said recent advancements in treatment meant there were now more adults living with CHD than children.