Emily was born with a unique heart, bringing with it rare challenges.

Shortly after birth, Emily was diagnosed with a congenital heart defect (tetralogy of Fallot with absent pulmonary valve), which impacts the flow of blood between the heart and lungs.

Doctors had prepared the family for a serious heart condition diagnosis, as prenatal scans had detected something was amiss.

But the full extent of Emily’s condition only became clear after she was born at almost 42 weeks’ gestation.

Mum Jessica said Emily was expected to be born premature and with many complications.

“We were told that Emily would most likely be born early, have significant developmental delays, behavioural issues and poor quality of life,” she said. “Instead, she was born over her due date and bright pink, not blue as other babies with heart conditions often are.”

Despite this outwardly healthy appearance, Emily underwent open-heart surgery within five hours of being born and was fitted with a temporary shunt to provide her lungs with blood.

Image: Emily as a baby, recovering in hospital

Emily had another surgery at five months old, with her shunt successfully replaced with a new valve. Jessica said, hopefully, Emily won’t require another major procedure again until the teenage years, when she may need a replacement valve to match her adult-sized heart.

Jessica said, over the course of the medical care, Emily’s doctors also discovered her heart was positioned in an usual way, a shock to Emily’s cardiologist.

“Emily has an exceptionally rare combination of heart defects, but she has thrived in spite of it,” Jessica said.

Image: Emily, 6, is now thriving

“Emily achieved her early milestones and started prep this year. She loves being outdoors, playing with her school friends and painting and drawing, which she puts her whole heart into. With the help of the cardiologist team, we have so much optimism for her future.”

Jessica said Emily had also helped other children by taking part in medical research.

“Emily contributed to a study at Murdoch Children’s Research Institute (MCRI), partly due to the rarity of her heart condition, she said.

“As a family, we were proud we could participate and help make the future brighter for children just like Emily, who might not have recovered quite as well or might need new treatments we don’t know about yet.”

MCRI’s Heart Group, led by Professor Michael Cheung, is dedicated to better understanding childhood heart conditions. The group uses innovative techniques including CRISPR gene editing, advanced artificial intelligence (AI) and other tools to investigate new therapy options.

Image: Emily (left) with MCRI Professor Michael Cheung

MCRI’s Dr Holly Voges leads another research project, using cutting-edge stem cell technology to grow heart valves in a dish from a patient’s own stem cells.

Dr Voges’ research could help children like Emily in the future, who are born with damaged or absent heart valves.

Emily and her family recently visited MCRI to see this research up close. They toured the stem cell facilities and a specialised biobank, where her donated heart tissue is kept frozen for future research projects.

Image: Emily (right) with MCRI Dr Holly Voges

Emily’s gift for art can be seen across Big W stores nationally, which is raising money for MCRI’s childhood heart research. The colourful Heart Tokens featuring her design can be bought for $2 and hung on Christmas trees throughout the holiday season.

Image: Emily (front) with her dad Tristan and mum Jessica with her Big W heart designs

Emily’s design, alongside others from young heart patients, has also appeared on a public mural in the Melbourne CBD.

Image: Emily at the Big W store mural in Melbourne, which features her bright design

Read more about MCRI’s Heart Regeneration research.