Millions for HeartKids and medical research into congenital heart disease

Fate was dealt a double blow for the Baglin family of Miranda following the diagnosis of two different yet both life-threatening illnesses.

First, little Eva, now two years of age, was as a newborn being treated for an incurable heart condition, then her father, Luke, was struck down with a rare form of meningitis.

Aimee Baglin was between hospital rooms caring for her husband and daughter, while they were in intensive care at the same time. 

It was during Mrs Baglin's pregnancy scan that picked up Eva's defect. 

"She needed surgery on Christmas Eve as soon as she was born - I didn't even get to hold her straight away," she said.

"It's like operating on something the size of a walnut. She had her second open heart surgery at five months old and will have her third one soon."

Not long after Eva's first operation, Mr Baglin was diagnosed with crytococcus meningitis and encephalitis, an extremely rare condition caused by inhaling spores from gum trees that can carry a deadly fungus. 

But life goes on for the family, and Mrs Baglin says while times are tough, their spirits are lifted by Eva's vivacious nature.

"Eva knows she has a scar and is limited in some things, but she loves swimming and playing with other kids," Mrs Baglin said.

The shape of love: Luke and Aimee Baglin with their daughters Aria, and Eva, who was born with a rare heart disease. Picture: John Veage

The shape of love: Luke and Aimee Baglin with their daughters Aria, and Eva, who was born with a rare heart disease. Picture: John Veage

Eight babies in Australia are born each day with congenital heart disease. It is a lifelong condition and is one of the leading causes of death and hospitalisation in infants, affecting one in every 100 births according to the Australian Institute of Health and Welfare.

But hope for families has been lifted, with the federal government announcing it is providing $20 million for medical research.

This funding from the Medical Research Future Fund will work towards better diagnosis, treatment and prevention of the condition. It is aimed at better understanding the disease’s genetic causes.

One million dollars across six years will help implement the recommendations of the National Strategic Action Plan for Childhood Heart Disease by supporting HeartKids. It will coordinate policy action, and drive collaboration in management, care and support, research and community awareness.

The financial support is a long time coming, says Mrs Baglin.

"Not much about the condition is talked about, so this is exciting," she said. "Treatment is a series of surgeries and that hasn't changed in about 40 years. It's been stagnant.

"I would like my daughter to get to 40 and not have a heart transplant. We've been given the gift of time with surgery but I'm greedy, I want more time. More research will find a better way to treat and support kids."