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Call for more research to help mend babies’ broken hearts

Lucas recovers from heart surgery when he was 11 weeks' old.

Lucas recovers from heart surgery when he was 11 weeks’ old.

“It was a hard pill to swallow that he would be born with a heart defect, but we just had to reassure ourselves that everything would be fine and the doctors could fix it.”

It turned out Lucas did not need surgery immediately, but he did have a procedure when he was 11 weeks’ old to repair his heart.

Ms Everson said it was a difficult time for the whole family.

“My mother died a few years ago so my sister had to come down from Townsville to look after my daughter, who started her first day of Prep on the same day as Lucas’s surgery,” she said.

“It was difficult, in and out of hospital all the time. My partner works full time and there was really no direct support that could help us out.”

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Eight babies are born with a heart defect every day in Australia, while four die each week from complications related to their condition or the surgery to correct it.

CHD charity HeartKids is calling for more research into the causes and treatments for congenital heart disease to prevent children and their families having to endure the ordeal of dealing with the condition.

Holly Williams from HeartKids said so far it had contributed $3.4 million towards research into the underlying causes of CHDs, as well as improved treatments.

“Currently there are over 65,000 children and adults with congenital heart disease in Australia, and there are many more parents and carers involved as well,” Ms Williams said.

“So when you look at statistics like that, that is why we’re supporting research into the condition.”

Lucas with sister Abigail, who also had a heart scare, though hers didn't result in any problems.

Lucas with sister Abigail, who also had a heart scare, though hers didn’t result in any problems.

HeartKids is supporting a study through Australian Genomics that is looking into the genetic causes of CHDs.

It also offers counselling and support while families are in hospital, as well as financial and other support when they leave hospital, including a hotline – 1800 432 785.

Ms Everson said despite ongoing monitoring, Lucas is doing well, but she hoped that in the future, families would not have to go through what hers has endured.

“He’s smashed it, he’s been really good. You wouldn’t know he’d had heart surgery, he’s just a crazy little kid,” she said.

“I think if you have the knowledge prior, you can prepare for it practically, but then prepare for it emotionally as well.”

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