A solo mum has spent the last 15 months in and out of hospital with her baby daughter, who has already had three open heart operations.
Emily Burke, 39, had her first child, conceived through IVF, last year as a solo mother.
Minutes after being born at 36 weeks, hew newborn daughter Phoebe was found to have two rare conditions.
Tracheoesophageal fistula meant her oesophagus was not properly connected to her stomach, while duodenal atresia saw her pancreas growing around bowel.
Just hours later the premature baby was also diagnosed with tetralogy of fallout, a childhood-onset heart disease (CoHD) comprised of four heart defects.
The first few months, Ms Burke said, were a blur.
Phoebe bounced between high-risk operations and health woes as surgeons joined her oesophagus, put a stent into her heart, and managed blood clots and surgical complications.
CoHD is the number one killer of infants under one in Australia, with eight babies born with
CoHD daily.
Four die every week.
“She was covered in tubes,” Ms Burke said.
“I saw her nearly die so many times, but I still can’t imagine life without her.”
Phoebe Burke is slowly emerging from 15 months in and out of surgery, as she battles the number one killer of Aussie infants under one, CoHD.
Now Phoebe is nearly 15 months old, and has already undergone six operations, including three open heart procedures.
“She’s doing super well now, she’s just started crawling,” Ms Burke said.
“We still have a long road ahead, but I’m proud of how far she has come.
“She’s getting stronger.”
During the months of operations, Ms Burke said she came across HeartKids, a not-for-profit organisation supporting children impacted by CoHD.
Ms Burke said through HeartKids she met numerous other families struggling with cardiac diseases, and slowly she began to feel less alone.
“In the hospital world, HeartKids are my support system and there is a local HeartKids group,” she said.
“Down the track, they do things like teen camps, where my daughter will someday be able to go and not feel so alone or different.”
On Friday, an annual nationwide Hero for HeartKids fundraising day will invite supporters to channel their inner superhero and raise awareness and vital funds for CoHD, dressing up as superheroes and donating.
“I bought a cape and mask, and we’ll dress up,” Ms Burke said.
10-06-2024 Emily Burke with daughter Phoebe to go with heart kids story. Picture: Brad Fleet
HeartKids chief executive Marcus Sandmann said the 2024 fundraising goal was $350,000.
He said funds raised through the Hero for HeartKids campaign would enable HeartKids to provide crucial in-hospital and in-community support, as well as advance research efforts aimed at understanding CoHD, facilitating early intervention, with the hope of finding a cure.
“Our Heart Kids and their families are incredibly courageous in the face of CoHD,” he said.
“They are the real heroes who we wish to celebrate in this important campaign.”
Individuals and teams still have time to register online for Hero for HeartKids to kickstart their fundraising journey at hero4heartkids.org.au.
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