Five heart surgeries for woman with congenital disease not enough to miss Splendour

Five heart surgeries for woman with congenital disease not enough to miss Splendour

Five heart surgeries for woman with congenital disease not enough to miss Splendour

Updated 21 July 2017, 13:20 AEST

A tenacious young woman not expected to live past the age of six proudly displays her scar as a reminder of what she has been through.

The artistic photo captures a contemplative young woman bathed in the light of a coastal evening.

But look closely and an aggressive scar between her breasts, from her neck to her abdomen, is clearly visible.

And that's how Cara Curan likes it.

The 33-year-old woman from Sawtell, on the New South Wales mid-north coast, is recovering from her fifth open heart surgery, and said her scars act as a reminder of her strength and bravery.

The photo was submitted to the ABC Open Pic of the Week project by friend Leah Moore to demonstrate that congenital heart disease (CHD) is not a barrier to embracing life.

Even this weekend's Splendour in the Grass festival is on the 'to-do' list this year for Cara, who was in intensive care again in January.

"I'm pretty excited [because] it's the big milestone my sister, partner and I aimed for after my surgery — to be well enough and all recovered to be able to go," she said on Thursday.

Number one killer of babies

Cara was born with a rare form of pulmonary atresia in 1984, at the Royal Hospital for Women in Sydney.

"Mum has just had me and the nurse came in and told mum I was the bluest baby she'd ever seen and went to get more doctors," she said.

In layman's terms, Cara's is a condition where the blood flow between the heart and the lungs is compromised due to blockage of major vessels.

Surgery is needed to create a 'shunt', or to place an artificial tube, between the aorta and a branch of the pulmonary arteries, to ensure the baby receives adequate oxygenation.

According to HeartKids Australia, CHD is the biggest killer of children under the age of one and each day, eight babies are born in Australia with a heart defect.

There is no known cure or prevention.

Two surgeries in first week

At three days old, Cara underwent her first heart surgery. At six days old, she had her second surgery.

"They [doctors] told my parents that basically, I needed a heart-lung transplant but they were unheard of in babies [at that time]," she said.

"They said 'Take her home, enjoy her because we don't think she will live to the age of six.'"

At six months, Cara's parents were approached by cardiothoracic surgeon John Wright to try an innovative technique.

Whatever Dr Wright did obviously worked, as Cara did not need more surgery until she was 21.

"My parents never wrapped me in cotton wool and that must have been hard for them," she said.

It was not until January that Cara underwent her most recent surgery after attending a routine check-up with her Sydney cardiologist Professor David Celermajer.

Realising boundaries as an adult

Now Cara wants to share her story and encourage and inspire other young people with CHD — or any chronic illness — not to let their illness define their lives.

She admits that it has been difficult — emotionally and physically — to deal with her heart disease.

As a child, she did not take much notice but as an adult, she has realised just how different she is from her peers.

"After my fourth surgery [at 21], I got a new lease on life; I pushed boundaries," Cara said.

"I thought, 'If I'm not going to be here for a long time, I want to be here for a good time' and I don't want to live with any regrets.

"Also, it pushes you to appreciate the small things in life, like not sweat the stuff you can't really control."

Cara said that while there were lots of support groups for parents of babies with CHD, there was less available for teens and young adult survivors, and she wants to offer support to others.

"At the moment, I am trying to get a blog and website up and running but you can definitely find me on Instagram and I'd love anyone to reach out," she said.

"You don't have to let it define you.

"You can still play sports, fall in and out of love, travel the world, surf, snowboard down mountains, make new friends, even have a cheeky beer or two.

"You fought hard to get where you are, so let your soul sparkle and enjoy your life … you deserve it!"

As for the Pic of the Week photos, Cara said it had been "liberating" to be photographed.

"When I was a kid, my parents told me I was part of a special club, the Zipper Club, and [my scar] was my own personal zipper," she said.

"The scars themselves are just a reminder to me of what I've been through, and I'd feel naked without them now."