Sunday marks the start of the nationwide @Heart campaign Scars For Fighters. HINERANGI VAIMOSO talks to one West Auckland family working to raise funds and awareness.
Tracey Ashton's pregnancy went well until she had an emergency caesarean five weeks before her son's due date.
They were both home in Laingholm a week later with Daniel's dad Steven Booth. Everything was going fine until the baby's weight started to plateau.
"He didn't put on weight for about two weeks which is very worrying at that age," Ms Ashton says.
Tests run by their GP showed Daniel's heart was only receiving 50 per cent of the oxygen needed to fuel the rest of his body.
He was rushed to Starship Hospital where an echocardiogram showed he had a transposition of the arteries.
The two main arteries coming from the heart were the wrong way around and there was a hole in his heart.
Ms Ashton was told he would have died within a few weeks had it not been picked up.
Seven hours of open heart surgery followed.
"That was tough. The doctors explained what was to happen but nothing can prepare you for that," she says.
"He pulled through though and we lived at Ronald McDonald House at the hospital for about a month."
Ms Ashton and Mr Booth discovered @Heart, a foundation caring for families with children who have heart conditions.
"They were amazing. There wasn't a day when someone from @Heart didn't stop in to see if we were okay."
A volunteer known as nana Marie was a standout for the family.
"Whether I needed her to get something for me, or just needed a cry, she was there for us."
Both sets of Daniel's grandparents live in the United Kingdom so Ms Asthon says finding support was key to their family's recovery.
"Even when something minor would go wrong with Daniel, we'd be worried sick until I'd talk to other mums through @Heart who would reassure me that all would be okay."
Daniel's now three, full of energy and laughs.
"He's certainly doing well now.
"You wouldn't know anything was ever wrong unless you saw the scar on his chest that he now calls his zipper," she says.
Ms Ashton now belongs to a group of West Auckland mums brought together by @Heart.
She and four others will undergo the Heart Stopper challenge in Takapuna next Thursday. They will sit in an icy pool of water for five minutes to raise funds and awareness for the organisation.
"We're so lucky to still have Daniel and so thankful to @Heart for the support," Ms Ashton says.
"This is my way of giving back to an amazing organisation."
Chief executive of @Heart Lorraine Warshaw says 12 babies are born in New Zealand with a heart defect every week.
"Congenital heart disease is often spoken of as a hidden disability. It's not until you see the long scar on the chest that you know there is something wrong," she says.
"It affects all aspects of the lives of the child and the family and they need our support to help them fight their battle with congenital heart disease."
Its services are free of charge. Largely because of the national annual street appeal set to be held on August 10.
Ms Ashton encourages all people to donate through either the street appeal or the Heart Stopper Challenge.
Go to heartstopper.org.nz westie-mums to donate.
- © Fairfax NZ News
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