Toddler Joe Massa would have turned three on 9 November, but his life was cut short after failures by Northern Beaches Hospital one year ago. Parents Danny and Elouise have embarked on a campaign to ensure no child ever dies again because of insufficient care. Editor in Chief Michelle Giglio reports.
On an ordinary tree-lined street on the Northern Beaches, there is a family home which looks like so many others. There’s a trampoline out the front, soccer balls resting on the grass and muddy boots on the porch. Inside the house, there are photos of children with sunny smiles, scatterings of LEGO on the floor, and piles of clothes to be folded.
But something which seems incongruous to the happiness within is a shelf in the kitchen, where there sits a picture of toddler Joe Massa, his angelic face beaming out to the world. A few of his favourite toys cocoon the photo, and lit candles cast a warm glow on his face. On 14 September, the Massa family will commemorate the first anniversary of Joe’s death, a child who died after numerous failings by staff at the Northern Beaches Hospital emergency department.
One year on, the grief is never far away for Danny and Elouise, two ordinary individuals thrust into a position no parent ever wants to face – leaving hospital without their child. Joe was their youngest, just two months away from his second birthday.
“I don’t know what to say when people ask me how many children I have and how old they are,” Dannys says. “I say three. But it’s not easy.”
The toddler is still very much a part of their lives, from the first ‘good morning’ of the day. “He’s included in conversations all the time,” Elouise explains. “We talk about Joe, we remember him. Our love for him keeps growing. It doesn’t just stop. And we’ve made that a focal point of our life and our grieving process to always remember him.”
Joe was a ‘beautiful’ child, Elouise says. “He’d light up any room that he walked into. And was just a really gentle, beautiful, kind soul.”
As we sit down for our interview in the family home and start talking about Joe, Danny gets emotional and leaves the room. “Sorry,” Elouise says quietly to me. “We both have post- traumatic stress disorder.”
The story of how little Joe, a previously healthy little boy who went to hospital after vomiting, and was triaged incorrectly as being lower risk, not given a drip or put on a monitor despite his accelerated heartrate, hit the headlines on 20 February.
“’No chance of life:’ Parents demand answers after two-year- old’s tragic death,” wrote news.com.au. “Grief-stricken parents demand urgent review,” blared the Channel 7 news. “Fury erupts at Sydney hospital where two-year-old boy died after a series of medical mistakes,” said the dailymail.co.uk.
Within hours of Danny and Elouise speaking out, Premier Chris Minns had weighed in on the shocking revelation. “It was clearly a terrible, terrible mistake,” the premier said at a press conference. “It’s every parent’s worst nightmare and I can only imagine the pain they’re going through.”
Healthscope operates the public part of Northern Beaches Hospital (NBH) as well as the private side, under a deal set up by the previous Liberal Government.
And Healthscope, Danny and Elouise say, so outraged them with their inadequate responses as to why Joe had died, that they decided to go public with their pain back in February.
“There was just no accountability,” Danny says. “They apologised for the care that Joe was given. And they acknowledged that it was clinical error (and due to) individual performance. But the hospital and the management of the hospital, particularly the emergency department – the fault lays at their feet too. And the failure of the REACH protocol.”
REACH (Recognise, Engage, Act, Call, Help is on its way) was enacted by NSW Health in hospitals a decade ago to help carers and families escalate their concerns with staff about worrying changes in a patient’s condition. Elouise asked NBH staff three times to put Joe on a drip as she was worried about his deterioration, but this did not occur. She had no idea REACH existed – and neither did Premier Minns.
After a report into Joe’s death, known as a Serious Adverse Event Review, the Massas met with Healthscope to discuss the findings. Elouise had gone into this ‘open disclosure’ meeting ‘on a path of forgiveness.’ But the couple did not get the answers they were seeking – and this became a turning point for action.
“We were horrified at the responses we were given,” Elouise says. “We knew that it wasn’t good enough. It wasn’t good enough for us, and it wasn’t good enough for the community.
“We were so disappointed…that we said, ‘We need to seek justice. We need to search for answers above and beyond what we are being provided.’”
Joe was a ‘gentle, beautiful, kind soul’
What has followed in the six months since their campaign launch on 20 February has been an incredibly swift response. Just days later, NBH chief medical officer Peter Thomas told Budget Estimates on 27 February: “Retrospectively, it would’ve been appropriate to give baby Joe fluids earlier in his admission.” On 14 March, the NSW Parliament’s Public Accounts Committee announced it would undertake a second inquiry into Northern Beaches Hospital, with a focus on safety and quality of services. The inquiry received over 700 submissions, with a report yet to be released. On 27 March, the government declared it would never again allow a private provider to operate a major public hospital in NSW. Public private partnerships were banned as ‘Joe’s Law’ on 5 June.
Shortly after, Healthscope declared it had asked the government to buy back the public part of the hospital. Discussions continue on how the complex contract will be undone, with no timeline for completion – and Healthscope’s parent company is now in receivership, further complicating matters as its 37 hospitals across Australia await to be sold.
“It’s taken us to speak up as heartbroken parents to bash down doors,” Elouise says. “While we didn’t have an understanding of where this would go, what we have achieved will save lives,” adds Danny.
“It makes Joe’s death matter.”
How did they get the strength to go past their grief, do countless interviews and stand in front of dozens of television cameras, allowing the nation to see their anguish?
“You are fuelled by such a feeling of injustice that you’ll do anything,” Elouise says firmly. “You’ll move heaven and earth to make your voice heard. We were doing this for everyone and for accountability. Healing cannot occur if you don’t pursue justice.”
On a practical level, the Massas get on with life as they have two other children to look after. “We can’t sit in a heap and not function,” says Elouise. “We need to do it for Teddy (7) and Grace (5). They need to have normality.”
They also own a busy full-service advertising and marketing agency with 15 staff. “The team relies on us. The clients rely on us, and we rely on the business. So it’s symbiotic,” says Danny.
Which is why just two weeks after Joe died, the couple went back to work. “People may struggle with that concept, but you do have to, if you have a business, compartmentalise and get on with it,” adds Elouise. But it also served another purpose. “It’s a distraction,” Danny admits.
A distraction for the pain that peppers life daily, and the fact that their son’s death could have been avoided. “The moment we entered the emergency department, he had no chance of survival,” says Elouise. “No one took his observations,” says Danny. “No one ever hooked him up to a machine until he died. No one ever gave him a drip until he died,” Elouise adds.
Yet somehow Danny and Elouise have found purpose in their campaigning.
“The advocacy work that we are doing is a way we can channel grief for good,” Elouise reflects. “The release of our story to the public was not only a relief for us as a family, because no more were we just carrying that burden ourselves.
“And obviously where we hit rock bottom, losing a child – you can’t even imagine it. But it’s where we repair. We are trying to repair our lives now with more intention and love than ever.”
After a roundtable between the Massas and government, Joe’s Rule is being developed, which will overhaul the REACH protocol to make it more accessible and publicised. And just last month, the couple and NSW Health Minister Ryan Park launched a new tool to support parents in hospital with children. It will require healthcare workers to regularly ask: ‘Are you worried they are getting worse?’
Initially when the couple embarked on the campaign, they knew they were asking for a lot of changes to occur, Elouise says. “We were told, ‘You’re probably asking for too much.’ And I went, ‘That’s okay. We’ll keep asking.’ And we won’t stop until we are in a place that we feel that we can stop.”
Elouise and Danny have fronted many television interviews, including the launch of the ‘Are you worried they are getting worse?’ campaign
“For all the good that this will achieve for people, I’d take it all back to have Joe.”
Danny Massa
The campaign has taken Elouise and Danny away from their children at times, with an ‘angel’ neighbour providing incredible support, as well as family, friends and the Northern Beaches community. The toll is heavy.
“It takes a lot of energy for us to do this,” Elouise admits. “We’re also trying to balance running a business, raising two children and campaigning. It’s a lot for anybody.
“But when I hear of parents saying they want their child to have a drip in hospital, and the nurse or doctor pushes back. And then they say, ‘No, Joe Massa. We want a drip.’
“It’s like Joe’s name is a real catalyst for change. And that makes us feel like some good is coming from such an unimaginable, harrowing tragedy.”
Regardless, Danny is sanguine about their loss. “For all the good that this will achieve for people, I’d take it all back to have Joe.”
Elouise pauses. “Of course,” she adds. “But you can’t rewind time. And out of a tragedy, we chose to do something good. We can’t make different decisions. There’s all these ‘what ifs.’ What if we took him to Royal North Shore Hospital? We can’t do that. But we can do something good.”
For the anniversary of Joe’s death – which Elouise considers to be 14 September, even though his life support was turned off two days later at Sydney Children’s Hospital, where he had been transferred after his cardiac arrest – the family will likely go away, a strategy they use a lot to cope with the sadness. “I think we find a lot of solace in taking time out with the family and going on mini holidays to reset,” explains Elouise.
“Because there are so many memories of Joe here, which is great, but when you go away, you’re out of the community, you’re out of the every day,” adds Danny. “So you still think of Joe, but you don’t have that depth of grief.”
As they approach Joe’s birthday, I ask Danny and Elouise if they think about the milestones Joe would have achieved had he still been alive. “Seeing Joe’s friends growing, that’s been really, really difficult,” admits Elouise.
“He’s still alive in our hearts.”
I put it to the couple that they have elicited action in a way that has cut through ‘red tape’ that usually bogs down attempts to achieve change.
“It’s the straw that broke the camel’s back sort of scenario,” Danny says sadly. “Unfortunately, that was Joe. We just shone the spotlight on an area that needed fixing.”
“By us speaking up, it sends a really strong message, to the community, individuals and government, that our voices matter. And every person’s voice matters,” adds Elouise.
“I also hope that speaking up will have the flow on effect for other people seeking justice in their own lives. Change doesn’t belong just to the government. It doesn’t just belong to one group of people. It actually belongs to everyone as individuals.
“If you see an injustice in life, do not be complacent. And just be empowered. It only takes one person to keep talking.”
Find out more about Joe’s story at actionforjoe.com.au