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 5th Birthday](https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=134&q=60&w=120 120w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=269&q=60&w=240 240w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=403&q=60&w=360 360w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=538&q=60&w=480 480w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=672&q=60&w=600 600w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=806&q=60&w=720 720w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=941&q=60&w=840 840w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1075&q=60&w=960 960w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1210&q=60&w=1080 1080w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1344&q=60&w=1200 1200w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1478&q=60&w=1320 1320w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1613&q=60&w=1440 1440w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1747&q=60&w=1560 1560w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1882&q=60&w=1680 1680w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=2016&q=60&w=1800 1800w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=2150&q=60&w=1920 1920w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-5th-Birthday-300px.jpg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=2218&q=60&w=1980 1980w)
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 Charlotte and her parents in the hospital](https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=81&q=60&w=120 120w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=162&q=60&w=240 240w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=243&q=60&w=360 360w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=324&q=60&w=480 480w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=405&q=60&w=600 600w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=487&q=60&w=720 720w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=568&q=60&w=840 840w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=649&q=60&w=960 960w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=730&q=60&w=1080 1080w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=811&q=60&w=1200 1200w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=892&q=60&w=1320 1320w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=973&q=60&w=1440 1440w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1054&q=60&w=1560 1560w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1135&q=60&w=1680 1680w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1216&q=60&w=1800 1800w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1297&q=60&w=1920 1920w, https://victorchang-cdn.imgix.net/assets/src/uploads/Charlotte-parents-hospital.jpeg?auto=compress%2Cformat&crop=focalpoint&fit=crop&fp-x=0.5&fp-y=0.5&h=1338&q=60&w=1980 1980w)
“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.