Hannah Johnston on living with a heart condition

Musician and university student Hannah Johnston has escaped the jaws of death four times in her young life, with her will to live conquering the grim reaper months before she was even born.

A pregnancy appointment to reveal the gender of their unborn child quickly turned into a life or death decision for a Gympie family after the baby was found to have a rare congenital heart condition.

Those devastated parents thought they would be preparing for a funeral after the birth of their baby but now, almost 20 years late, that baby not only alive and well, she has defied death several times and is kicking goals.

Nineteen-year-old Hannah Johnston sits on a couch in her air conditioned home at North Deep Creek, near Gympie, discussing her dream of becoming a laboratory technician and opening up on a life spent in and out of hospital.

Hannah was born with Ebstein’s anomaly, a congenital heart condition affecting the tricuspid valves.

“The thing I loved explaining the most was the fact I was special and could wear a bracelet to school; the other kids were always jealous of the bracelet that I could wear and they couldn’t,” she said.

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Hannah Johnston was born with Ebstein’s anomaly, a rare congenital heart condition.

The downside was that she would fatigue easily, was unable to join in sports at school, and had to take plenty of breaks to get through the day.

A building at St Patrick’s Primary School in Gympie had three flights of stairs and by the time Hannah would get to the top, she would have to take a breath to regain herself before going to class.

“I have a small hole called ASD between my two atriums. If I push myself too hard a small clot can form in my bloodstream that has the potential to block that hole – and that’s yet to ever happen,” she said.

“Bushwalking or hiking, I’ve got to have multiple stops along the way, just so I can physically make it to the end of it,” she said.

“It becomes quite strenuous on my body; I’m quite often fatigued and my heart plays up for days afterwards.”

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David Johnston (father), Liam Brauer (partner) Hannah and mother Gaylene Johnston.

Instead of playing school sports, Hannah became an accomplished classical musician, playing piano and a variety of string instruments - she now performs and teaches regularly.

Her mother, Gaylene Johnston, beams with pride when she talks about Hannah, and recalled the first week at the hospital when the doctors told her to send the family in to say goodbye.

“But she rallied and with the dogged determined that she still has to this day, she fought and went, ‘I’m not leaving this world’,” Mrs Johnston said.

When she was almost four, a day spent mustering cattle with her uncle near Gin Gin turned into a life or death moment, and Hannah once again chose to live despite a twisted bowel which erupted and turned into an internal hernia causing sepsis and the loss of 30cm of her small intestine, Mrs Johnston recalled.

Just before her fourth birthday, Hannah Johnston developed a twisted bowel and ended up in emergency surgery where 30cm of her small intestine was removed.

Hannah sits calmly listening to her mum recall the story.

She is wearing a floral green and pink blouse and clipped onto the waist of her jeans is a matching floral-framed diabetes monitor, notifying her of any blood glucose irregularities.

She had to start wearing the lifesaving device plugged into her arm when a regular blood test showed she was a “ticking-time bomb” and was diagnosed with Diabetes Type I in her last two years of high school.

“There were a lot of fluctuations with my physical health during those and it meant that I wasn’t able to go to school quite as much,” she said.

Hannah Johnston has not only survived against the odds, she has thrived, while all the time managing her congenital heart condition. Picture: Christine Schindler

The science and medical world has always been the choice of career for Hannah and her days off school reflected on her ATAR score.

Despite this, Hannah found a way to get into an Associate Degree in Medical Laboratory Science, and will complete a Bachelor of Medical Science from the University of the Sunshine Coast by the end of 2024.

Her array of music, citizen, and resilience awards are just the beginning, and this Australia Day she is a third-time nominee for the Gympie Young Citizen of the Year award, taking home the title previously in 2020, and 2022.

Describing herself as quiet and introverted, in the past year she has challenged herself to take on a more public facing community roles and is a Gympie Showgirl entrant.

On February 10, Hannah will host a sold-out Heart2Heart high tea fundraising event at Kingston House Impressions, where she and miracle survivor Tracey Devereaux will share their experiences and resilience.