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Melbourne mum's fight to raise awareness of deadly childhood disease

One of the biggest killers of Australian babies is congenital heart disease (CHD) and one Melbourne mother is determined to boost awareness for the "severely underfunded" condition.

Evie Thomassen, 2, was born with pulmonary atresia with VSD MAPCAS, a rare congenital heart condition.

Since birth, she has undergone four surgeries and multiple procedures, which has led to the toddler developing post-traumatic stress disorder (PTSD), sometimes referred to as continual stress disorder (CTSD).

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Raising a young child with a rare heart condition as well as PTSD is a battle that is exhausting, terrifying and devastating all in one.

Evie's mother, Lisa Thomassen, is calling for more funding into medical research of CHD to improve the chances of survival and increase the surgical options available.

Evie had her first surgery at just 28-days-old after spending a week in the newborn intensive care unit ward, and then another after her first birthday.

The mental health effects of CHD were almost more damaging than her physical debilitations.

"She didn't develop any physical complications, but mentally I have never seen anything like it," Ms Thomassen told 9News.com.au

"She stopped talking, she stopped eye contact, she stopped even moving her body at all in the hospital. It was like she was just blank."

Shortly after, a psychologist came to look at Evie because, as Ms Thomassen said, "she had not stopped screaming".

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"As soon as she woke up in ICU she screamed nonstop for about five days," Ms Thomassen said.

"And the only time I could get her to stop screaming was to put her in the hospital's pram and walk around the ward.

"I actually wore holes in my socks for trying to get her to stop crying. It was awful.

"But then she just went quiet and it actually made it even more scary."

Evie screamed every night for a year at home after being discharged from hospital.

Sometimes she would not even recognise her own mum.

"It was so bad that she wouldn't sleep for longer than an hour at night for about a year after it," Ms Thomassen said.

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"I was just exhausted and she was having extreme night terrors – not recognising me at all, scratching at me. I couldn't even calm her.

"She didn't want me to leave as well. It was horrific.

"The mental effect has been almost as bad as the physical. It's just clear that for a while there she learned not to trust us."

CHD is the most common birth defect in Australia and affects about 1 in 100 babies. From approximately 300,000 registered births per year in Australia, between 2400 and 3000 babies are born with a form of CHD.

It is also one of the largest killers of newborns – perinatal and congenital conditions cause 80 per cent of infant deaths, according to the Australian Institute of Health and Welfare.

Ms Thomassen said part of the problem was awareness for CHD is not as high as other illnesses, including childhood cancers.

"You hear so much about childhood cancer and a lot of other diseases, but before we had Evie we didn't know anything about CHD," she said.

"It's not spoken about and it's severely under-funded."

HeartKids is the leading research funding body in Australia for research into the causes, treatment and management of childhood CHD.

The organisation says further study is critical in improving the outlook for children with heart disease.

"Research has the power to change the outlook for those with congenital/childhood heart disease, but sadly investigations in this area remain significantly underfunded," HeartKids states on its website.

Evie had to do physiotherapy to learn how to walk again and she finally did get to a "good place mentally".

But the toddler still shows signs of trauma to this day.

"She will still not let me wash her face if she has a dirty face, because of the taping that was taping her tube down," Ms Thomassen said.

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Evie's family is raising money for a therapy dog to help her stay calm and feel safe.

She may live to be a teenager or a young adult if she is lucky, but her family has been told her condition is palliative.

"They found her lung arteries on her left side have narrowed, so there is not much else they can do for her," she said.

"Hearing that … you grieve for everything you thought your life would be."