Charlotte's story: Surviving heart defects

“I had to say goodbye to my baby girl as she was wheeled into an operating theatre where surgeons would cut a huge hole in her tiny chest. It was the most tormenting moment in my life.”

“On the day she was born,” says Charlotte’s mum Saasha, “they could tell her heart wasn’t beating normally”. Her precious little baby needed open-heart surgery. Charlotte had two holes in her heart and two faulty valves.

Watch the video below to learn more about Charlotte's story and her heart defect.

Why are babies born with heart defects?

Charlotte 5th Birthday

Charlotte is not alone. 1 in 100 babies are born with a heart defect.

Sometimes the causes are genetic. Sometimes the causes are a result of something else happening that affects the way the cells develop.

Our focus is on the genes and identifying mutations that may be associated with birth defects and how to prevent them.

We already have some answers. In fact, Professor Sally Dunwoodie’s team has already identified 12 specific genetic mutations that cause heart defects in children, out of around 130 known around the world.

But there is still a long way to go. We need to raise funds to map and analyse the genomes of 50 more people who have evidence of mutations relating to heart defects.

Why is medical research so important for affected families?

Charlotte and her parents in the hospital

“It’s imperative, especially for families like us, if they could find a cure or some way to stop this from happening,” says Saasha.

“What if something had happened to Charlotte? The thought of this is unbearable. Life is very precious”.

“There are families out there who have lost their children, so I am very aware of how lucky we are to have Charlotte. The work that the Institute is doing brings hope to families just like us.”

Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.

Victor Chang Cardiac Research Institute - The Home of Heart Research for 30 Years