Glenorchy’s Filisetti family shares their story of grief, anxiety and hope ahead of HeartKids Two Feet and A Heartbeat charity walk

Little Haddie was only five weeks old when she was diagnosed with having a rare heart condition. Now her parents have shared their grief while doing what they can to promote awareness. READ HADDIE’S STORY >>

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BECOMING a parent for the first time is daunting enough, but throw in a baby with a congenital heart disease and a global pandemic and it’s like nothing most people have ever had to go through.

But that was the reality for Glenorchy parents Brooke and Andrew Filisetti earlier this year.

Their daughter Haddie was born on May 12 at the Royal Women’s Hospital in Melbourne and just three days later, she had her first heart surgery before another at five weeks old where she was diagnosed as having Shones syndrome.

Andrew and Brooke Filisetti with their almost five-month-old daughter Haddie.
Haddie has a heart condition and the family will participate in the annual HeartKids' Two Feet and a Heartbeat walk. Picture: LUKE BOWDEN

“It means everything in her left ventricle is working, but not enough to sustain her,” Mrs Filisetti said.

“At some point she’ll either need repairs on everything on the left side of her heart or it will have to be replaced.”

The family were in Melbourne for three months after Haddie’s birth, with no family support and Andrew’s mum also passing away.

“That added a whole new element of grief, uncertainty and anxiety,” Mrs Filisetti said.

“I’m just glad we’re not there now because COVID has made something that is already so hard and unbearable even more so.

“It’s so good to be back home and getting back into a new normal, but it has triggered the trauma of all we’ve been through from seeing our baby’s little chest open with a ventilator.

“During that time of going through it, you just do whatever you have to do to make sure your baby is alright. You don’t really think about anything else and you live in this bubble of focusing on what will make her better.”

Haddie, now almost five months old, is happy and well, but will face ongoing surgeries and medication.

Eight babies are born with congenital heart disease each day in Australia.

The annual HeartKids Two Feet and A Heartbeat charity walk will take place virtually this year on October 18 in support of kids with congenital heart disease and their families.

“We’ll be going for a family walk and will celebrate Haddie and her achievements and will think about those families whose little ones haven’t made it,” Mrs Filisetti said.

For more details on the event visit the HeartKids website.