EMILY Monro (9 months) was almost two months old before being diagnosed with holes in her heart.
Her mother Kelly said she gave birth to twins Jack and Emily 34 weeks into her pregnancy, and initially their premature birth was attributed to Emily’s lack of growth.
“The first seven weeks, where Jack was gaining 200g a week, Emily was struggling to put on 30 to 50g,” she said.
When they realised Emily was not making the same milestones as Jack, she was diagnosed with childhood heart disease.
“She had a hole between the atriums and another hole between the ventricles. Instead of two valves, she had one single valve,” she said.
Mrs Monro said her daughter was put on a feeding pump for nine weeks “to fatten her up for surgery”. At 16 weeks, she had open-heart surgery. “Since then, she is like any other baby,” mum said.
The Bellevue resident said HeartKids WA provided the family with support in the lead-up to the surgery, and it helped being able to talk to other mothers who had been through similar experiences with their children. Mrs Monro said simple gestures such as bringing her and her husband Scott lunch and coffee helped make it easier.
“With Princess Margaret Hospital, when you’ve got kids in there, you don’t want to leave their side,” she said.
Mrs Monro said her husband’s employer BHP Billiton had donated proceeds from scrap metal for the past three months to the charity, and their club, Victoria Park Baseball Club, was also helping to raise funds.
HeartKids WA ran a fundraising initiative through August and September called Cuppa for HeartKids, where people could host events such as high teas or coffee dates with family, friends, school or workmates.
Money raised helps the charity support families with babies born with childhood heart disease, and fund continuing research.
HeartKids WA acting chief executive Cecilia Donovan said at the previous count six babies were born with childhood heart disease in Australia each day, with four lives lost each week.
However, according to the latest data, eight babies a day are now being born with CHD, with half surviving.
“There is still no known cause or cure for childhood heart disease because unlike coronary heart disease, it isn’t caused by lifestyle factors such as diet and exercise,” she said.
For more information, visit www.heartkids.org.au.