From Inquirer – June 15, 2019
The death of little Rio Fowler is a story of pure anguish, but also hope.
It’s October 2018 and Ryan Fowler, house master from the Scots College in Sydney’s Bellevue Hill, is in agony. Everything hurts, including his heart.
He has just run 1000km across 26 days, which has taken a toll on his body; his heart is broken because his little boy, Rio, died before the age of two from a condition so rare it had not been seen before.
Fowler had conducted his long run in Rio’s honour. He was met at the school gates by the marching band, which had assembled to bring him on home. He wept as he fell in behind them, marching finally into the arms of his wife, Karen, and their now five-year-old daughter, Remi.
Former NSW premier Mike Baird described the moment as “humanity at its finest”. So, too, was the treatment Rio received at the end of his one precious life.
The end.
It’s what we’re here to talk about — how Rio’s life ended in the most nurturing environment possible; and how the Fowlers would like to see that standard of care extended to more children — but before the end, there was the beginning.
Rio James Fowler was a beaut little kid, born on July 21, 2016, a son for Karen and Ryan, a little brother for Remi.
“We were very excited to find out we were having a boy,” says Karen. “We wouldn’t have minded either way, but it’s exciting to have something different. Late in the pregnancy, doctors said he had lost some fluid around him. I ended up having an emergency caesarean at 36½ weeks. But it was fine. He looked like a grumpy old man — you know how sometimes you have those little boys who are quite serious looking?
“He was a bit skinny, but otherwise he was a blonde, blue-eyed bundle, captivated by his sister, and just the easy baby, you know how that happens with the second one? He was our little cuddle man, all about food, and being warm, and just gorgeous.”
Rio was born with some small lumps on his right leg but they soon went away, replaced by what everyone figured was a birth mark.
“It was big, pretty much the length of his leg,” says Karen. “It would intensify in colour and then fade off, but he was otherwise developing normally. We were keeping an eye on it. They thought it might be vascular, and we did have a lot of scans on the leg, and we had his kidneys scanned, but he was urinating fine, and we had just been referred to a dermatologist when Remi got gastro at preschool, and everyone knows what that’s like: it just goes through the house and takes everyone down. Remi came home with it, and Rio vomited two hours later.”
So far, so normal.
Rio Fowler.
“But then she got better in 24-48 hours, and we were waiting for him to get better, but he didn’t,” says Karen. “I said to Ryan, it feels like he’s really limp, and we took him to emergency, and they got fluids into him, and he perked up, and I took him back home. But call it mother’s instinct, I thought: no, something’s wrong, he wasn’t getting better, and I took him back, and they had another look, and he perked up again, and we took him home again, around midnight.
“But then I breastfed him and he vomited it all back up, and we went straight back to hospital and they put him on a drip and it was running right through him. It was just filling up his nappy. I said, this can’t be right.
“They took his blood pressure, and by now it was through the roof, and he was straight to the ICU, and they were saying: we’re so sorry, we don’t know what is causing this, and within a few hours, his leg went black.” Specialist paediatricians suspected some kind of cancerous tumour, perhaps in the abdomen, blocking the flow of blood to Rio’s legs.
“They said, we have to take the leg off,” says Karen. “But that was not enough in the end. Finally, they took us into a room and said: ‘We opened your child up and it’s not a tumour. We’ve never seen anything like it. All the arteries are mashed together and he is not getting blood to the lower half of his body, and we’ve put stents in, but we just can’t be sure what parts of the body are getting blood and what are not.”
Karen and Ryan had prepared themselves for cancer and for life with a one-legged boy.
“The truth was, he was dying,” says Karen. “You can’t quite get your head around that. But his wound after the amputation started leaking. He got gangrene. He went back into surgery and this time they took the hind quarter (some of Rio’s buttock, while leaving the hip joint, in case he did survive, and a prosthetic might one day be attached) but looking back, it was trying to plug holes in a sinking ship.
“He was dying from the moment we took him in there. His condition was fatal from birth. We just didn’t know that. His stomach was decaying and his intestinal tract was breaking down, and everything we were doing was prolonging the inevitable.”
Rio’s condition — so rare that most doctors had never seen it before — had left him with arteries unable to supply enough blood to his major organs and the blood vessels around his body.
“He was never going to live a long life, but we had the absolute pleasure of not knowing that,” says Karen. “We didn’t live a sick child life, we had a healthy child life — the park, babyccino, the Wiggles, avocado — and by the time we found out, it was almost over. They told us, he will die but we can’t say when — probably soon.” The family was given the option of allowing Rio to die in hospital, which seemed a bleak choice; taking him home, which was daunting; or going to Bear Cottage. “I’d never heard of it,” says Karen. “But we went and had a look.”
Ryan and Karen Fowler, with daughter Remi, 5, at Bear Cottage in Manly, where little Rio died in 2018. Picture: Britta Campion
Bear Cottage is a one-of-a-kind facility in Sydney’s northern beaches. It looks like a beach house — it’s big and cosy, and it’s near the sea — but it provides palliative care for children.
“You can’t tell,” says Karen. “The rooms are like normal bedrooms. The nurses don’t wear uniforms. You can sit in the garden. You can go to the beach.”
Medical care is on hand. They have clown doctors, but also a dog called Beau. There’s a quiet, safe, end-of-life room.
“They said, you can take a family suite for yourselves. And your mum and dad — my parents, Rio’s grandparents — can take one of the rooms downstairs, and we will take care of all of you. We couldn’t believe it. They were so kind.”
Bear Cottage’s nursing unit manager, Narelle Martin, was there when the Fowlers came in. She remembers Rio as “a beautiful, cheeky little boy”.
“Our goal was to see him through, but our philosophy is to take care not only of the patient but of the whole family,” she says. “It’s allowing them to have the cuddles, to read stories, not having to worry about whether the pain medication is right, not having to worry: when is the next meal? Not being in a hospital environment. And we will try to accommodate not just the parents but everyone who is important in the child’s life: not just siblings but also parents, aunts and uncles, others they might need.”
The Fowlers arrived on December 21, 2017, and “from that day, we had our food taken care of, our washing taken care of”, says Karen. “They organised free tickets to a Wiggles show. They said: you and Ryan go out. We took Rio to the beach. We had Christmas together, Santa came. There were lollies, and mummy’s right here, and it was a safe, calm environment. It wasn’t like hospital. I could just be mum. Honestly, they put our family back together.”
The family stayed until Rio died on January 15 last year.
“Death is scary for anyone, and as a parent you’re terrified what that may look like, but if you’re surrounded by people who are experienced, that phase of life can be taken sensitively,” says Narelle.
And the cost? It was all free, in part because of the state government; and in part because in this country people give generously to such causes, including to fathers such as Ryan when they take to the streets to raise funds in Rio’s name.
“Bear Cottage isn’t a place we’d ever heard about before, and the idea that other kids are sick and suffering and there’s not a Bear Cottage for them, I thought, I can’t live with that,” says Ryan. “We found out one family was coming over from Western Australia and we asked: why are they doing that? Because they don’t have one there. The only way I know how to deal with my grief, my anguish, is to try to help them.”
Mike Baird, former NSW Premier, who since leaving politics has been campaigning for a Bear Cottage in every state. Picture: Britta Campion
There are only three palliative care centres for kids in Australia: Bear Cottage in Manly is one; the others are Very Special Kids in Melbourne and Hummingbird House in Queensland. None can take more than eight children at a time. “It makes no sense to me that the service isn’t available to everyone who needs it,” says Ryan.
And so, having run from Melbourne to Sydney to raise funds last year, this year he will undertake Rio’s Ride from Adelaide to Sydney, via Melbourne and Hobart, on a bike, rather than on foot.
Baird, who is an ambassador for the cause, has written to the premiers of each of the states Ryan will ride through — South Australia, Victoria and Tasmania — urging them to meet Rio’s dad, and commit to opening or expanding their own palliative care services for children and young adults. “It’s personal for me, having met Ryan and Karen,” Baird says. “I’ve left politics, but this is beyond politics. It’s one thing for me to talk passionately, but they can talk about the difference that was made in the few weeks they had there, what was magical about it, how they made memories, how they weren’t as traumatised as they could have been in a hospital setting. That’s why I’m so passionate, because in the most desperate human circumstances, a loved child, a terminal illness, there is such love and hope.”
For Ryan, who must do the ride, there is more pain ahead, but it’s now mainly physical. “We are a Christian family and we don’t see what happened to Rio as a mistake,” he says. “There is a proverb: every child is fearfully and wonderfully made. Rio’s life was precious, and it is my task now to honour that.”
Rio’s Ride is from October 3 to 19. To register or to create a fundraising campaign, contact info@rioslegacy.org.au
CAROLINE OVERINGTON – ASSOCIATE EDITOR
Caroline Overington has twice won Australia’s most prestigious award for journalism, the Walkley Award for Investigative Journalism; she has also won the Sir Keith Murdoch award for Journalistic Excellence.
This article was first posted in The Australian Newspaper
