Why are dying kids reliant on charity?

Helping parents navigate the unthinkable

Nikki Macdonald, 17 September 2023

Siliana Rogoyawa died of a brain tumour in 2021, aged 9. 
Specialist palliative care help allowed her parents Nerina and Isimeli to bring her home for her last days.

One of Siliana Rogoyawa’s favourite things was to sit on the sand at Ōtaki Beach and feel the wind on her face.

So when the 9-year-old was diagnosed with an incurable brain tumour, and given just days to live, her family wanted to give her that joy one last time.

“It was just a blessing that Siliana got sent off so well,” says Siliana’s mum, Nerina.

She and husband Isimeli wanted their girl to spend her last precious moments in the home she grew up in, surrounded by the people that loved her.

“So we took her home, because that’s where she felt happy,” Isimeli says. “That was the best moment of our life, as a family.”

The Porirua family had already had a tough time of it. While Siliana was normal at birth, at three months she was floppy and suffering seizures. The Rogoyawas were told she would never walk or talk. No-one knew the cause. Wheelchair-bound, Siliana communicated with body language. She went to the local Ngāti Toa school. And for nine years, she was the happy centre of the family’s universe.

That world imploded when, in 2021, Isimeli found a huge lump on Siliana’s head after showering her for school. The brain tumour was untreatable. Because the couple lived in Wellington, they could access child palliative care help through Mary Potter Hospice.

Specialist Amanda Evans worked with the family’s nurses to allow them to swap hospital for home. The team taught Nerina and Isimeli to give Siliana morphine. They sent art projects to entertain the couple’s four other children and took their eldest out for a day trip.

“We were lost, as parents,“ says Nerina. Having specialists on call helped
them find a way through.

When the family wanted to take Siliana to the beach an hour away at Ōtaki, they made it happen. And they gently helped them decide when it was time to remove Siliana’s feeding tube.

“I accepted it, but I was heartbroken,“ Isimeli says. No parent should have to bury their child, he says, tearfully. But the palliative care team was ”someone to rely on, to put our shoulder on“.

Siliana is everywhere in the couple’s Titahi Bay home. On a banner in the lounge and looking down from a photo on a tapa cloth above the couch. In family photos lovingly framed above a bookshelf bearing a plaster cast of her handprint.

In the end, Siliana hung on for a month. Knowing she had the best possible send-off means they can remember the good times, Nerina says.

The palliative care team not only helped keep Siliana comfortable, they also supported the couple’s four other children.

“We were lost, as parents. We weren’t ourselves. The team helped us through it, and helped us through our grieving. Not only were they helping Siliana and her medication, but also speaking with us, on how we were feeling.

“And if I was lost, in the night, the team would be there: ‘OK Nerina, you can do this.’”

A secret donation funding a new central region child palliative care service means families from Wellington to Hawke’s Bay can now access the kind of specialist care the Rogoyawas were so thankful for. But others around the country are not so lucky.

The work is hard,
but knowing others are suffering is harder

Amanda Evans should be ecstatic. Someone is finally paying her to do full time the work she trained for for 16 years – giving dying children and their families the good death they deserve.

But she can’t be happy knowing that someone is an anonymous philanthropist and not the health system that she believes should fund this essential service. And knowing that other whānau, elsewhere, are still missing out.

“The work is hard, but it’s actually harder for me to hear about children who have end-of-life palliative care needs that aren’t getting met.”

One of only three child palliative care specialists nationwide, Evans has been advocating for a national service to end the postcode lottery for families with dying kids. Together with Auckland specialist Ross Drake, she proposed a hub-and-spoke model to give families in even the most far-flung corners of New Zealand the best possible care.

At present, New Zealand has just one publicly-funded specialist paediatric palliative care team, based out of Auckland’s Starship ​hospital. It hasn’t grown in 15 years, despite population growth. There’s also a child hospice in Waikato, a palliative-trained paediatric oncologist and two specialist hospice nurses in Christchurch, and now the charity-funded central region service. That makes care “inequitable and inaccessible”, Evans’ and Drake’s proposal says.

“Children’s palliative care remains neglected, grossly underfunded and largely ignored,” the proposal says.

Their proposed service would create four regional hubs with specialist teams, who would work with families and their local health workers.

By year five, each hub would have at least one palliative care specialist and clinical nurse specialist, plus social workers, bereavement support, play therapy, psychologists and Māori liaison workers.

Earlier this year, Drake and Evans petitioned then associate minister of health, Barbara Edmonds, for the $6 million they need to set up the network. That would rise to $10m by year five.

But the proposal has gone nowhere,
beyond thanks and praise for their efforts.
“Actually we don’t need praise. We need funding,” Evans says.

It was Evans’ “yelling from the rooftops” that caught the attention of an anonymous donor, who offered funding for her, a specialist nurse and emotional support worker to set up a palliative care service for families for the central region, for two years.

“I’m just so grateful to have the opportunity to have this wonderful service that we truly believe in,” Evans says.

A spokesperson for the donor says they were looking for a project to help children who would otherwise miss out on medical care, and were impressed with Rei Kōtuku’s mission “providing great comfort to children and their families at a most challenging period”.

Evans hopes the project, Rei Kōtuku, will be a pilot for the national service she says is still desperately needed. Because for every one of the 300-350 Kiwi children who die a year, the tentacles of grief spread wide, from the siblings and parents to school friends, marae and churches.

“That’s one child a day who is dying with palliative care needs. And it’s not just about that one child. Children are never isolated.

“It’s a wave that impacts everyone in that community...If 350 children all died at once, we would never ignore that. We would be flying counsellors from all around the motu, we’d be up in arms, it would be on the news every night. But because it’s one a day, and it’s behind closed doors, it’s like, OK.”

The lingering legacy
of a traumatic death

When Rachel Callander’s 2-year-old daughter Evie died in Timaru in 2010, she received no palliative care support.

When Rachel Callander lost her “pure joy” in Timaru in 2010, no-one even mentioned palliative care.

Born with a rare chromosomal disorder, Evie was always on borrowed time. Callander mentally planned her funeral from the early days, but carried those dark thoughts alone.

The closest the couple came to a palliative care plan was signing a do-not-resuscitate form. So when Evie died suddenly, at the age of two, the family didn’t even know who to call.

“When you’re in the middle of extreme grief, trauma, uncertainty, not knowing some of the very basic things can add a layer of pain.”

And no-one told her that she and her husband might grieve differently and struggle to communicate. No-one offered counselling. No-one talked about financial support, so as a self-employed photographer, she had to keep working to pay the bills.

“I ended up photographing a wedding six days after my child died, and it was awful...So I feel like I didn’t actually properly grieve until years later. Because you just end up in a burnout state of existence, and it’s scary to talk about these dark thoughts.

“The lack of support, it’s just layers and layers of extra grief.”

Evie was born with a rare chromosomal condition, and died in 2010.

Now living in Perth, Callander works with Palliative Care Australia, including on a project supporting families to choose where their child dies. There, paediatric palliative care is government-funded and they’ve just released a national action plan. It’s a world away from her experience, and she’s gutted that families in New Zealand are still depending on charity, if they can get specialist help at all.

“It’s incredibly saddening and disappointing. It’s frankly not OK...Because you make memories around the death of your child, the same way you make memories of their life.”

‘We can’t be on the streets waving buckets
around to support these children.’

Evans’ and Drake’s proposal says the need for a fully-funded, nationally fair service is urgent. Hospice NZ chief executive Wayne Naylor agrees.

“At the moment, across New Zealand, if a child needs palliative care, it’s literally that postcode lottery...It’s very urgent, because, literally, there are children dying who don’t have access to really good specialist palliative care...So there are kids that are probably dying with uncontrolled symptoms, unsupported families. And that needs to change.”

There has been progress. In the past year, Te Whatu Ora has hired palliative care advisers. “We’re no longer yelling at an empty chair,” Evans says. And the agency has appointed a national palliative care steering group.

The rhetoric has also shifted. The Health Ministry last year said the current system of general paediatricians supported by advice from Starship’s child pain team “provides a service for children across the country”.

Now, Te Whatu Ora interim director for population health programmes, Deborah Woodley, acknowledges that children and their families get different levels of paediatric palliative care across the country.

“We know this is distressing for those impacted.”

While providing full paediatric palliative care services nationwide is challenging, work is under way to develop a nationally consistent model for both child and adult end-of-life care, Woodley says.

Associate Health Minister Peeni Henare also says it’s not acceptable for children and their whānau to have inconsistent access to paediatric palliative care across Aotearoa.

“That’s why the health reforms, which aim to address inequity and the ‘postcode lottery’ system, are so important,“ he says.

However, asked whether Labour would commit to funding a national paediatric palliative care service, Henare failed to respond. Asked the same question, National Party health spokesman Shane Reti also failed to respond.

Both Evans and her mystery donor are clear about one thing ‒ Rei Kōtuku cannot be a replacement for a fully-funded national service. While it’s set up as a charitable trust, it’s designed to fold into Te Whatu Ora.

“This can’t be a charity,” Evans says. “We can’t be on the streets waving buckets around to support these children. It has to be an essential service.”

Frankie to the Rescue

Michelle and Warrick Wood had amazing care from Starship Hospital’s paediatric palliative care team and
believe parents nationwide should have the same access to expert 24/7 help.

Frankie Wood loved Fireman Sam and Paw Patrol. He was super sweet and super loud. And in December 2020, just before his third birthday, he was diagnosed with brain cancer.

Because the Woods live in Auckland, they had the least awful journey through the most awful experience imaginable. “The wonderful Gemma” ‒ a nurse specialist with Starship’s paediatric palliative care team ‒ helped them navigate the unthinkable.

“It’s so overwhelming and scary,” says Frankie’s mum Michelle. “They were just really patient with us and would answer any questions we had. But also they knew when we needed to know things.

“The big thing was, when we were ready, talking about how we wanted Frankie’s last days to look like. It was really important for us to be at home. It was the palliative care team that made that happen.”

Michelle and Warrick Wood lost their 3-year-old son
Frankie to brain cancer in April 2021. 

In Frankie’s last 2½ weeks, the team would visit, and be on call 24/7. The Woods felt they had a plan, and some control. To think if they’d lived elsewhere they would not have got the same care “is just scary”, Michelle says.

“I think we were quite shocked by the idea that we got better or different support than someone in a different location. Which is just terrible. Looking back, if you were to find out ...that there was more you could have done to support your child, would just add a whole other degree of trauma,” says Frankie’s dad, Warrick.

The couple have started an initiative to help parents with dying children, called Frankie to the Rescue. Everyone in that situation should have the best support possible, Michelle says.

“Having the right people around you, who can help you understand everything, that’s just so important. It’s pretty tough to think about about people not having access to that.”