‘I tell her scars are beautiful’
Doctors told Aria Smith’s mum she might have to go home to die. Now, writes Annemarie Quill, the 4-year-old is an ambassador for Heart Kids NZ.
There were no mermaids or unicorns on Aria Smith’s first birthday cake. Instead, the three tiers were decorated with real life heroes who’d saved her life.
‘‘In her first year, we spent more time in hospital than at home, or travelling between Tauranga and Auckland in ambulances, helicopters, and both of the Starship planes. So I designed hospital scenes from icing,’’ says mum Falcon Smith, 24, a mother-of-two living in Te Puke.
Before she was 8 months old, Aria had four open-heart surgeries at Starship Hospital, with her first six-hour operation at just 12 days old. ‘‘Her heart would have stopped beating, as she only has one ventricle to power her body.’’
A typical heart has two ventricles – chambers which keep the heart pumping blood. Aria is also missing essential heart valves.
Now 4, Aria was scheduled for more big surgery this month, but it may be postponed until next year when she is stronger.
The happy, bubbly girl expertly swerves her bike to avoid the rabbit in the Pa¯ pa¯ moa daycare centre where her mum is a trainee teacher. No-one would know she has a heart condition. It’s only when she lifts her top to proudly show a map of scars that her battle is revealed.
Smith kept a journal of every procedure. When Aria looks at the photos , she asks ‘‘who’s that?’’ ‘‘I tell her scars are beautiful because they’re part of her life journey.’’
Smith is determined to see Aria lead a fulfilling life, but until she has the fifth operation, too much physical activity affects her.
‘‘We’ve had scares when she’s turned blue, as that means she’s not getting enough oxygen.’’
After tests when she was pregnant, Smith learned her baby’s heart had not grown normally. There was a chance Aria wouldn’t survive.
‘‘I freaked out, but I told myself it would be OK. I was still breastfeeding my older daughter Mia, who was almost 2, so I had to keep calm for her.’’
When Smith had to go to Auckland to give birth, accompanied by Aria’s dad Daniel Smith, 25, it wasn’t just the medical information she found bewildering.
‘‘I’m just a country kid. I’d never even been to Auckland before. It was overwhelming.’’
Her anxiety increased after Aria was born. She only had a few moments of skin-to-skin contact before Aria was whisked off to intensive care. One doctor told Smith that if Aria had no gallbladder there would be no heart surgery, so she ‘‘might as well take her home until she dies’’.
Thankfully, Aria did have a gallbladder, and they kissed her goodbye as she was wheeled into theatre for surgery.
‘‘Knowing they were going to open her up made me emotional, although we had to do it. The sevenhour wait was agonising.’’
A second surgery was needed a few weeks later , but by that time,
Smith was more at ease thanks to Heart Kids NZ, an organisation that supports families of children with heart conditions.
‘‘Heart Kids put me in touch with another ‘heart mum’ on the ward with a baby with a similar condition,’’ Smith says. ‘‘We’re best friends to this day.’’
She’s grateful to the charity for ongoing help. ‘‘There was a person who’d notice when I was stressed, and she’d give me a voucher for coffee and caramel slice – my ‘go-to’. They’d fill the fridge at the Ronald McDonald house with meals and baking.’’
Aria was thrilled to be a Heart Kids ambassador. ‘‘She’s proud of her role and asks if she is famous,’’ Smith says. ‘‘I tell her she is special, and she says, ‘yes, but am I famous?’ which makes me laugh.’’
Every week, 12 babies are born with a congenital heart condition in Aotearoa, and other previously healthy tamariki are diagnosed with acquired heart conditions.
Heart Kids NZ chief executive Dr Ruth Gorinski says Ma¯ ori families experience significant inequities within the health system, which the organisation seeks to address.
‘‘Heart Kids NZ works hard to ensure families like Aria’s are supported, so they don’t experience this disparity in health outcomes,’’ Gorinski says.
Heart Kids NZ has a future focus on children diagnosed with rheumatic heart disease, where Ma¯ori and Pasifika families are over-represented.
‘‘Knowing they were going to open her up made me emotional, although we had to do it. The seven-hour wait was agonising.’’ Falcon Smith
Heart Kids NZ’s fundraising event ‘Little Heart Day’ will take place on Friday, March 18. To donate or help fundraise contact littleheartday.org. nz, 0800 543 943 or info@heartnz. org.nz