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Finding her voice: Sophie Nester’s heart story

Sophie Nester was born with a heart condition and a form of spina bifida. She had three open heart surgeries before she turned five. Now 26, Sophie is a disability support worker in Bendigo, Victoria.

Sophie Nester has overcome many physical challenges in her life.

Born with a heart defect known as hyperplastic right heart syndrome, as well as a form of spina bifida called sacral agenesis, Sophie had only been alive for eight hours when she underwent her first open heart surgery.

She would have two more heart surgeries by the time she was five years old.

From the age of nine, Sophie also had to endure two ankle reconstructions, three bone fusions on her feet and ankles and two operations on her bladder thanks to complications from her spina bifida.

More than just a physical experience

The physical challenges were tough enough, but during her teen years, those physical challenges became emotional as well.

“When I got to about 13, things became a lot harder, especially emotionally, as people just couldn’t understand what I was going through,” Sophie explains.

“I also got bullied in high school, which made me feel very lonely."

It was a really hard age. I was also trying to find my identity – I wanted to be more than Sophie who lives with a heart condition and spina bifida.

One of the biggest challenges was being judged by people who didn’t know her. Because of her health conditions, Sophie couldn’t participate in sport and could only walk for a limited distance. She still lives with these limitations today.

As a result, she says, people often made assumptions about her based on her disability and decided – without asking her – what she could or couldn’t do.

“People weren’t taking the time to listen to me to find out what [I was capable of]. I really felt like people were just putting me straight on the bench without giving me a go,” she says.

Finding her people

Luckily, Sophie had supportive teachers who looked out for her throughout her time at school. She also had a welfare officer who encouraged her to examine her negative self-talk and equipped her with strategies to deal with criticism from others.

And it helped. While struggles of her teenage years are still a big part of her story, Sophie’s come a long way – today, she’s built a community of people around her who see her for who she is and what she has to offer.

She’s a member of Supporting Young Hearts, an outlet through which she can talk about her heart condition with other young people who know what she’s going through.

“Supporting Young Hearts is fantastic,” she says.

“I can download with others just like me. It’s so great to hear other people’s stories and the virtual catch-ups are amazing.”

She also has a great group of friends, an “amazing” boss and a job she loves.

“I work with other people who live with disabilities, helping them with daily tasks and teaching them life skills,” she says.

“I have been dismissed by others so to be their voice and advocate is really great.”

Advice to others

Don’t feel pressured to do things you can’t physically do. I have pushed myself many times as I just wanted to fit in. I have learnt that my health is more important than anything else.

Sophie shares her tips and advice on the Supporting Young Hearts: Heart to heart series podcast and is a member of the Supporting Young Hearts online support group. Visit us here to find out more.

If this has brought up any upsetting or distressing feelings, please reach out to your health care provider, contact Lifeline on 13 11 14 or visit BULLYING. NO WAY!


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