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As you may know, every 3 hours in Australia, a baby is born with Childhood onset Heart Disease (CoHD), that means 8 families are impacted every day and the lasting impact of this diagnosis can leave them feeling so alone.  

In May of 2022, Georgie was one of those precious newborns.  

At 36 weeks’ gestation, Georgie’s heart rate dipped dangerously low, and she was delivered via C-section.  

On Georgie’s very first night of life, she was placed on a CPAP machine for over 3 hours to support her breathing and to speed up her heart rate.

“I spent a lot of long and lonely days in the special care nursery with Georgie. I was forced to face the grim reality that our family may never have the chance to meet her.”  Rachael said.

Finally, when Georgie was 3 months old, she became the first baby in Australasia to be diagnosed with Type II Short QT Syndrome – a rare genetic heart condition that increases the risk of dangerous heart rhythms and sudden cardiac arrest. There are only 250 cases of this condition worldwide.  

It is unclear how best to treat the condition and given the lack of data, Georgie is now part of the research, paving the way forward.

Since Georgie’s diagnosis, her medical journey has been arduous. She’s had a pacemaker inserted, experienced multiple cardioversions*, and took part in a drug trial, all within her first year of life.

“Despite all these challenges, a significant moment for our family was celebrating Georgie’s first birthday because there was a time, we feared she would never reach this milestone.”  said Matt. 

HeartKids supports families impacted by CoHD like Georgie’s by providing emotional and practical support during times of hardship.  Rachael learned about HeartKids while in hospital and was grateful for the invaluable support given to families like hers. 

“I’ve seen HeartKids supports families like ours at some of the lowest and most challenging times of our lives. Our world is a better place because of them.”  

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