Parents of Finlay Browne call for change as recommendations from 'very special' inquest are released
With boundless energy and a wicked sense of humour, Finlay Browne was a "one-man party".
Running their hands over a Beach Boys record he cherished, his parents Rachel and Grant Browne recall his love of swimming, hot chips and the plans he had for his future.
Remembering their son, who was born with Down syndrome and autism, repeatedly brings smiles to their faces — but the pain of losing him to what they believe was a preventable death is undeniable.
"He wanted to move out of home … he wanted to get a job and he wanted a girlfriend," Rachel said.
Finlay would give anything a go. He was in a choir, tried canyoning and had sailed on Sydney Harbour.
Grant reckons Finlay had done more in 16 years than many people do in a lifetime.
"He always had us in stitches," he said.
"He was like glue. He brought us all in together."
The Browne's Bathurst home in central western New South Wales carries all the hallmarks of busy family life.
Photos of the family, the three children in their school uniforms and holidaying on the South Coast are testament to a family that spent happy times together.
Finlay's chair in the kitchen marks the spot where he'd enjoy chicken nuggets and entertain the family with a floor show before most dinners.
But now that chair faces Finlay's ashes and is forever empty.
On Friday, an inquest found the cause of Finlay's death to be complications from a bowel obstruction in the context of "issues concerning the adequacy of care and treatment" provided in the emergency department of Bathurst Base Hospital.
Magistrate Erin Kennedy described it as a "very special inquest" and acknowledged the Brownes' long journey to get an official finding.
"[Finlay] is someone who would have been lovely to meet," she said.
"None of this takes away any of the pain whatsoever."
What happened to Finlay?
It was the beginning of the September school holidays in 2016 when Finlay collapsed at home, clutching his stomach.
Rachel, who worked as a nurse, grew concerned when he couldn't stop vomiting and she noticed blood in his faeces.
Finlay usually hated going to hospital, but he was in such pain that he asked his parents to take him there.
On arrival at Bathurst Hospital's emergency department, Finlay collapsed on the floor, making an excruciating, guttural sound.
"I'd never heard anything like it before. His hands were cold, his skin was mottle. He was so pale," Rachel said.
Rachel said the triage nurse "rolled her eyes" when she looked at Finlay.
She said he was then put in a bed intended for patients who would be seen and sent home, but no-one came to see them.
Rachel said staff walked back and forth without stopping as Finlay continued to vomit and cry out in pain.
As she remembers it, several hours passed before a doctor even lifted Finlay's shirt and examined him.
"I couldn't understand why my son was put in a bed out of sight and there was no-one coming near us … and he was obviously critically unwell," she said.
"It was unbelievable."
Finlay was eventually diagnosed with a severe obstruction to his bowel and required emergency surgery.
When Rachel saw Finlay after that initial operation she was devastated.
"He had an open gut, he had [tubes] to monitor him, his stomach was still distended, he was muscle relaxed and ventilated," she said.
"I looked at him and thought, 'you're not coming home'."
The teenager was flown to Westmead Children's Hospital in Sydney early the next morning where he underwent 11 more surgeries. He remained in intensive care until he died in December.
One of the "final kicks in the guts" for the Brownes was that Finlay's Down syndrome was listed on his death certificate as a cause of death.
"He did not die from Down syndrome," Rachel said.
"Until we call this practice out, we can't possibly know the causation or extent of deaths of people with intellectual disability … and then we can't provide the education that the health system needs into these deaths."
On Friday, Magistrate Kennedy said all the parties during the inquest had worked together and the lessons learned would be "so helpful and so profound" going forward.
"It's cold comfort, but it's something, and it's a result of the strength of the family that we are here today," she said.
"It's a building block that starts with information."
Finlay isn't alone
For years Rachel believed her family's devastating case was an isolated one.
That was until 2020, when she gave evidence at the disability royal commission hearing on the treatment of people with intellectual disability in the health system.
There she heard countless stories of people like Finlay whose ailments were brushed aside and who faced the unconscious bias of some medical staff.
People with intellectual disability are twice as likely as the general population to suffer a preventable death, said Julian Trollor, director of UNSW's National Centre of Excellence in Intellectual Disability Health.
"These are deaths from conditions such as cardiovascular disease, respiratory diseases like pneumonia, neurological concerns like epilepsy, and cancers," he said.
Professor Trollor said work was being done to improve the health outcomes for people with intellectual disability, but more was needed.
He said it was vital medical staff understood how to communicate effectively with a person with intellectual disability and how to adjust their practice to include that person at the centre of the consultation.
"When a healthcare professional sees a person with obvious intellectual disability, they can make assumptions about that person without first checking what is … usual for that person," he said.
"Unless we check that baseline, we don't know how the person might be presenting differently … and therefore miss a critical health issue."
For Rachel and Grant, Finlay's vibrant spirit will live on in their hearts and minds.
When they spend time in their garden they're reminded of Finlay's love for his pets and the outdoors.
For them, the inquest was about pushing for a "thorough investigation" into what happened to him.
Rachel welcomed the findings but said she'd like to see unconscious bias reforms rolled out statewide, not just in Bathurst.
"This isn't about closure or justice because there is no justice. Finlay is dead," Rachel said.
"I want people to acknowledge that this has happened, and it continues to happen in our health system to people with intellectual disability."
Despite what happened to their son, the Brownes said they didn't want to discourage people with intellectual disability from seeking medical help.
"There are good people in the health system, we've found them [in the past]," Rachel said.
"But I think this is an example of what happens when things can go really wrong."
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