Baldivis mum Danielle Green campaigning for mandatory genetic testing when young people die suddenly
Ms Green spoke to the Sound Telegraph last year about the death of her children Sonny and Airlie from a rare genetic mutation called PPA2, which has been identified in less than 100 people worldwide.
In 2021, Ms Green and her husband Leon experienced every parent's worst nightmare when their first child Sonny died suddenly, aged just nine months.
Ms Green had taken Sonny to Rockingham hospital to be checked out but just 30 minutes later he went into cardiac arrest. He was transferred to Perth Children's Hospital but died a short time later.
The coroner ruled Sonny's cause of death as unknown and it wasn't until their daughter Airlie was born in 2022 that they found out why.
When Airlie was just five months old, she began suffering a familiar set of symptoms and then went into cardiac arrest.
Medical staff at Rockingham hospital managed to bring her back and Airlie was transferred to PCH.
Doctors could not find anything structurally wrong with Airlie's heart, so a series of genetic tests were ordered.
It was these tests that led to Airlie being diagnosed with PPA2 and the reason for Sonny's death a year earlier being discovered.
Airlie died in May 2024 after a cardiac arrest, aged just 18 months.
Had genetic testing been performed on Sonny, the gene mutation would have been picked up and the Greens would have been warned about the risk to their future children.
'Unknown' is listed as the cause of death for about 40 per cent of all people aged under 20 who die suddenly, but about 27 per cent of all unexplained sudden cardiac deaths in young people involved genetic mutations.
For this reason, Ms Green is now spearheading the Coroner's Project with Rachael Casella by her side.
"It is horrible to even think about your child being cut up for an autopsy, and a simple genetic test could have provided that answer."
In 2017, Ms Casella's daughter Mackenzie was diagnosed with spinal muscular atrophy and died before her first birthday.
Ms Casella and her husband Jonathan began campaigning to make genetic carrier testing free for all Australians, and in 2018 the Mackenzie's Mission research project was announced.
In WA, genetic testing is already used by the State Coroner's office but only 'if required'.
Other States and Territories have their own rules around performing genetic testing but it is not mandatory.
Ms Green said numerous parents had contacted her since she shared her story last year.
'A lot of them didn't get answers when their child died or are still awaiting answers, and then once they've read our story, they found out that genetic testing isn't always done,' she said.
'A lot of people assume genetic testing is done.'
Ms Green points to Kathleen Folbigg, who in 2003 was wrongly convicted of murdering her four infant children, as an example of where genetic testing could have prevented years of heartbreak.
'It breaks my heart just thinking about her, because that could have easily been me if my children had died in the home. I could have potentially gone down the same path,' Ms Green said.
'Already as the parent, you're sitting there, questioning, blaming yourself every moment.
'And when the coronial police come, they're taking photos, statements, questioning you and I don't think they try to make you feel that way, but you do automatically start going 'oh my God, I'm a criminal'.
'They've got to do their investigation, but the last thing you want to do is give a statement or watch them take photos of your child for their autopsy.'
Ms Green said consent and the cost of genetic testing had been given as reasons why it was not routinely offered after a sudden death.
'You know, with both my children, they've removed their brains and they sent them off to America, and I don't understand why they did that, because we knew what happened,' she said.
'And then imagining the cost of that is crazy. And you're just like, why? It is horrible to even think about your child being cut up for an autopsy, and a simple genetic test could have provided that answer.'
The cost of genetic testing is estimated to be about $4000 but decreases every year.
Last year, then-health minister Amber-Jade Sanderson said WA was looking at updating its model of care, but no progress or announcements have been made since.
Ms Green and Ms Casella have a Change.com petition pushing for Federal, State and Territory governments to make changes to the coronial process.
The Coroners Project is supported by several organisations, including Murdoch Children's Research Institute, Red Nose Australia, Australian Genomics and Mito Foundation.
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