Phi's story: Born with a hole in the heart
Phi wasn't even two years old when she was diagnosed with congenital heart disease. She needed open-heart surgery to live
When Phi was just a baby, her mum and dad noticed she wasn't eating much and was struggling to gain weight. Her parents Jackie and Darren searched for answers before doctors uncovered a terrifying diagnosis they would never have imagined.
Jackie remembers, “We went through a barrage of tests to figure out why she was so reluctant to eat. Eventually, we found out that there was a serious problem with her heart.”
Their baby girl had been born with a hole in her heart. A heart defect called Ventricular Septal Defect.
Worse still, doctors said they had to operate on Phi immediately before the hole damaged her heart even more. Can you imagine how frightening it would be for a parent to send their child into open-heart surgery?
Jackie and Darren knew it was the only way little Phi would have the best chance in life. But as the surgery approached, they couldn’t help but feel worried.
What if something went wrong?
The day of the surgery still stands out as such a clear memory for us both. It was so scary and incredibly upsetting. - Jackie
Facing every parent’s worst nightmare, Darren carried his little girl into the operating theatre where they’d cut open her chest to fix her heart.
“When I dropped her off in the operating room, there were so many doctors and nurses. It suddenly hit me,” says Darren.
Phi was crying as they placed the anaesthesia mask over her mouth. Darren kissed her forehead, and the doctors ushered him out.
Surgeons had to stop Phi’s heart during the operation. It would have only been the size of an egg.
Darren and Jackie were shocked to see their daughter when she came out of surgery, covered in wires and tubes, a huge bandage covering her chest. It's a painful memory still as Darren recalls.
We couldn’t even cuddle our baby girl. All I could do was stand by her bed and stroke her hair while Jackie held her hand. I find it hard to think about that moment.
But thankfully, Phi’s surgery was a success.
You would never guess she had such a traumatic start in life. Watch the day her heart was fixed
Now she gets to be a kid, run around with her two sisters, go to school and play games – the everyday things every child should enjoy but sadly not all do if they aren’t born with a healthy heart.
Unfortunately, she will probably need at least one more surgery, but hopefully not until she is much older.
Phi is sadly far from alone in what she went through.
Every day in Australia, eight babies are born with congenital heart disease. A gift from you today can support the latest breakthroughs in congenital heart disease research and help reduce the number of babies born with damaged hearts.
Many of them are not as lucky as Phi. Some will face medical issues long into adulthood. And tragically, four babies a week will die.
Research is the only way we can hope to prevent babies like Phi from enduring open-heart surgery before they even go to kindy.
We are closer than ever to potentially preventing congenital heart disease.
Stage One clinical studies are underway, we urgently need funding to progress to Stage Two, clinical trials. Your support can help us get one step closer to preventing congenital heart disease.
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.
