FOR the Cooper and Hollinworth families, February 14 is not Valentine’s Day but Sweetheart Day – a day to raise awareness of congenital heart disease.
Rather than splashing cash on tokens of love, they chose to spend today hosting a stall raising money for medical research and help for families.
It’s a topic close to their hearts, because both families have been through the ordeal of their children being diagnosed with, and operated on for, heart defects.
They raised $350 by selling merchandise in Centrepoint Shopping Centre today.
Sweetheart Day is a national HeartKids event that coincides with International Awareness Day for Congenital Heart Disease.
Amy Cooper’s daughter Isabella, 11, was not quite 18 months old when she had an episode of vomiting and turning blue.
She was diagnosed with Tetralogy of Fallot, a condition made up of four different heart defects.
A couple of months later, Isabella had open-heart surgery at The Children’s Hospital at Westmead.
It was fourth time lucky after having travelled to Sydney three times, only to have more urgent cases bump hers back.
Mrs Cooper said it was the longest five hours of their lives as parents.
“You just panic the whole time, because it wasn’t a 100 per cent chance that she was going to make it – it 60-40 or something like that,” she said.
“We sat at the hospital the whole time and we had a little buzzer … when it went off, we ran up there.
“It was just heartbreaking seeing all the wires and everything else.”
The hole in Isabella’s heart was patched and a valve had to be removed.
It will eventually have to be replaced, but she’s been told that’s not urgent as long as she stays fit and healthy.
There are a few ongoing worries: dental problems that can be associated with some heart conditions, and even some more “blue episodes” a couple of years ago.
However, Mrs Cooper said her family was “one of the lucky ones”.
“We were in ICU for two days and we were on a ward for a week, so within two weeks ... operation, recovery, home.
“But there’s a lot people down there that aren’t like that; they’re down there for months and even as the years go by, it’s back and forth, back and forth.
“We’re lucky, just 12-monthly check-ups.”
Mrs Cooper said the statistics of heart defects at birth were “massive”.
“Eight babies are born every day with a heart defect and four die every week, and I don’t think a lot of people know – I myself didn’t know until I had a heart baby,” Mrs Cooper said.
“Valentine’s Day is so commercial, so every year we celebrate this, we don’t celebrate Valentine’s Day.
“Me and my husband don’t give each other anything, it’s just like: ‘Let’s do this’.
“A couple of years ago, we did the Sweethearts Walk.”
Isabella said she didn’t give much thought to the fact she’d had doctors tinkering with her heart and it didn’t slow her down.
“I play touch football, OzTag and netball,” she said.
“I don’t think about it much.”
Mrs Cooper said she and her husband had always tried to not handle Isabella with kid gloves.
“But in saying that, too, there’s stuff that we won’t let her do – like she wanted to start playing tackle football, and I said, Hell, no’.”
Cathy Hollinworth’s daughter Claire, now almost 23, was found in utero to have essentially only half a heart.
Mrs Hollinworth was induced with a team of doctors at the ready, and Claire was operated on through her back at not much more than 12 hours of age and six pounds.
She had her first open-heart surgery at nine months and her last at four-and-a-half years.
While the details are very technical, Mrs Hollinworth said Claire’s heart was now able to pump the blood out to the body but the blood returned passively to the lungs.
“Her heart doesn’t beat twice, it beats once: she’s only got one pump.”
Mrs Hollinworth said HeartKids had helped her family and, through Claire, continued to help more.
“I see what HeartKids do and that’s why I continue to support HeartKids even though my daughter is 23 years old,” she said.
“They have teen camps, nationwide, and Claire has been able to met kids who are like her from all around Australia …
“Research is another thing that they’re doing; Claire and quite a few other kids are now ‘guinea pigs’.
“They will go back, and although they’re perfectly healthy, they’ll give her MRIs, they’ll do stress tests, they’ll do everything, to see how her body’s coping after having … the operation.”
- To donate to HeartKids, go to www.heartkids.org.au and look for the Donate button