Lots of love for half-a-heart tot
Four-month-old Charlie Ryall looks like any other bouncing baby boy. But the rosy-cheeked cutie has a hidden problem - he was born with just half a heart.
"Put a T-shirt on him and he looks fine," says his dad, Alan, referring to the scar on Charlie's chest from the open heart surgery he had two days after he was born and at 12 weeks old.
Charlie's big eyes beaming, bouncing on his dad's knee back home in Dunedin after months of gruelling medical treatment, appears to be wondering what all the fuss is about.
"No one knows there's anything wrong," Alan says.
"But for the rest of his life he is going to have a heart condition. Instead of a heart that looks like two grapes , he's got a grape and a raisin - only half his heart works and they've had to plumb the heart in a different way."
Alan and wife Mel have been on an emotional rollercoaster since their 20-week pregnancy scan at Dunedin Hospital.
Instead of being told the sex of their new baby as expected, they learned he had a severe congenital heart defect (CHD), in Charlie's case hypoplastic left heart syndrome.
It was severe and probably fatal. Twelve Kiwi kids born are born with a CHD each week.
But Charlie surprised everyone and lived.
That was mainly thanks to amazing medical care by teams at Christchurch Hospital and Auckland's Starship Hospital.
And anyone who meets the Ryalls - Alan 36, Mel, 34, Jordan 17, Dylan, 14, Leiha 5 - can clearly define their collective positivity and determination.
They say what's helped them through the shock, trauma, worry, constant travelling, family separation, and financial strain is the little-known national charity called @Heart. The charity is the only one in New Zealand helping affected families.
"They do as much as we want from them - they just do so much," says Mel. Christchurch Hospital staff connected them to @Heart's support workers days after the Dunedin scan, answering questions and visiting regularly.
And even though the organisation doesn't get any Government funding and depends heavily on sponsorship and donations, it has supported the family financially, paying for flights and meals, and activity packs for Leiha.
Alan says @Heart arranged for them to meet other families with CHD children. "I wanted to hear from a kid that's actually living through it. So they brought this 14-year-old boy around and talked to us about it," he said.
For Mel, they were "there when you just need a shoulder to cry on. It's getting a coffee and a cuddle."
@Heart Awareness Week, August 3 to 10, will raise funds for the only NZ charity for families affected by congenital heart disease.
Sunday Star Times