‘I knew I wasn’t likely to get old’: Austen Blackman-Gatehouse is choosing to end his life

Austen Blackman-Gatehouse and his wife Shannon say their bond has only grown stronger since making a choice that would have been impossible just a few years ago.

Born with a congenital heart disease, doctors told Austen Blackman-Gatehouse he wouldn’t survive to see his 19th birthday.

But now a decade beyond that painful prediction, the married 29-year-old is choosing to take control of his own death with his “steadfast” wife Shannon by his side.

Within the year, Austen says he will end his life using voluntary assisted dying laws that were introduced in South Australia in January 2023.

“The paperwork is done, my application approved, I have access to the means to end my life at any time I choose,” Austen told The Advertiser.

“There is no specific date.

“My health is unlikely to hold out more than a year. That’s an optimistic estimate.”

Austen is at peace with dying.

Austen Blackman-Gatehouse with his wife and full-time carer Shannon during their wedding. Picture: Supplied

Austen was five months old when he had open heart surgery. A surgery which resulted in his heart pumping “backwards”.

As he grew up he developed pulmonary hypertension which damaged his heart and lungs.

“I knew from a very young age that I wasn’t likely to get old,” he said.

In 2019, Austen received a call that would change his life – a set of lungs and a heart was waiting for him in Sydney.

“It was a bit after midnight, we packed and drove in a hurry to the airport, within a few hours I was in Sydney,” he said.

While in surgery Austen died on the operating table and needed to be resuscitated twice.

“My chest was open for the whole weekend as they worked to resolve the bleeding,” he said.

Austen woke from an induced coma four days later and remained in hospital for a month.

“The process of recovery was difficult,” he said. “There were medical complications, there was a lot of pain.”

He lost 10 kilograms and was on a “cocktail of drugs that caused hallucinations and paranoia”.

“Once I was out, we stayed in hospital accommodations nearby for roughly another month so I could attend rehabilitation appointments,” he said.

Likely within the year, Austen will choose to end his life. Picture: Supplied

Austen Blackman-Gatehouse celebrating Christmas in 2023 in hospital. Picture: Supplied

But in March 2022 his lungs rejected and despite doctors doing all they could, they began steadily deteriorating. Now they sit at 10 per cent function.

“There was no fixing it,” he said.

Now the 29-year-old is choosing to end his own life.

“Knowing that my body was going to continue deteriorating, I wanted control over the point at which I die as opposed to slowly suffocating,” he said.

He is supported by his wife Shannon, 44, who he married in June 2022.

“We’d been together about seven years before that and engaged for a year or so,” he said.

“When the doctors said I might not survive another year we thought we should probably just get on with it.

“I think an experience like this would have destroyed most relationships, but it has only strengthened ours.

“She has been at the core of my support and has been with me through every step of the way, while remaining absolutely steadfast. She is my best friend.”

Austen Blackman-Gatehouse has lost 20kgs since his wedding as his health continues to deteriorate while Shannon has also lost significant weight from the stress. Picture: Supplied

Shannon, who has been Austen’s full-time carer since mid-2022, she said she is not a “bystander” but a “participant”.

“What one of us goes through, we both do, and we support each other,” she said.

It wasn’t a surprise to Shannon that Austen decided to pursue voluntary assisted dying.

“I don’t think anything will quite prepare me for the reality of losing him, but I fully support his right to choose a dignified death over lingering in suffering,” she said.

“In his place, I would make the same decision.”

The wedding celebrant who made Austen and Shannon husband and wife will also be there for Austen’s final goodbye.

Wedding celebrant Joelie Croser married the couple in July 2022 and will join them again to plan Austen’s funeral, and eventually be his funeral celebrant when he chooses his time.

“I feel deeply honoured to know Austen and Shannon through their wedding that began my journey into their lives,” Ms Croser said.

“Their openness and willingness to trust me to guide them through both ceremonies is testament to the connection we have formed through tears, laughter, warmth and storytelling.”

Ms Croser called Austen and Shannon “extraordinary human beings who are navigating surreal circumstances with grace”.

If you’d like to support Austen and Shannon, you can donate here.

Originally published as ‘I knew I wasn’t likely to get old’: Austen Blackman-Gatehouse is choosing to end his life