Karen took baby son Rio to hospital with gastro only to be told he was going to die

Karen Fowler took her son Rio to hospital with what she thought was a stubborn bout of gastro, but was in fact something far more sinister.

She watched her son spend 40 brutal days in ICU, undergoing painful surgeries including two amputations, only to be told he was going to die.

"If I could change anything, it would be putting him through all of that pain," she tells 9Honey Parenting.

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"If I'd known that it was not going to help, I would never put him through all those horrendous things."

Rio was born a few weeks premature in 2016 but seemed like a happy, healthy baby for his first year.

There was a small lump on his leg that looked like a red birthmark, but doctors said it was probably nothing concerning. Even genetic tests came back clear.

"They were investigating it, but there were no alarm bells or anything. No one was worried," Karen says.

"There was so much blessing in not knowing that he was sick because we just lived a very normal kind of life in Sydney's eastern suburbs."

In November 2017, Rio's older sister Remi picked up gastro at preschool and passed it to him, but her baby brother couldn't kick it.

Karen took him to the local hospital in Randwick where doctors rehydrated the one-year-old and sent them home, but he just kept vomiting.

They went back to the emergency department twice and on the third visit, Karen refused to leave without answers, so Rio was admitted and about seven hours later things changed.

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"They did his blood pressure and found out that he was almost in cardiac failure. We went straight to the ICU," she says.

"They gave him a heap of medication and said, 'we're not sure if he's going to get through the night' … I was like, 'we thought he had gastro 24 hours ago, what is going on?'"

The next few hours were agonising, but Rio pulled through.

"And then that leg with the birthmarks just went black."

Something was blocking the blood flow to Rio's leg, which became septic, but doctors couldn't figure out what was causing it.

The one-year-old had to undergo amputation, but poor blood flow prevented the surgery from healing properly, so a second, more drastic amputation was required.

"They brought a surgeon out of retirement pretty much to do that one," Karen says.

"I had a chat with him beforehand and he said, 'you've got a 50/50 chance of [Rio] making it through this surgery', but we just had no choice at that point. There was no other option." 

Over the next few weeks Rio underwent five invasive surgeries as his health continued to deteriorate, all while Karen and husband Ryan watched on feeling helpless.

Four-year-old Remi would scream and beg her mum to come home every time she visited the ICU, not understanding the dire situation.

"I've got one child that now hates me because I won't come home, and one child that's dying. It's just horrendous," Karen says.

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After about five weeks, the family finally got an answer when doctors opened one of Rio's arteries and discovered the one-year-old had a rare, terminal heart condition.

They told Karen and Ryan that there was nothing more they could do and suggested moving Rio to a palliative care facility. It broke the family's hearts.

Karen's mind was still reeling when she was connected with Bear Cottage in Manly, one of only three children's hospices in Australia.

After 40 traumatising days in ICU, Rio and his family were welcomed to a home away from home where they were given the care and support to be a family again.

"I sat outside on the lawn with him for the first time in a month. I was able to pick up his little shunt and walk down to Shelly Beach at Manly and sit by the water with him," Karen says.

Remi got to spend time with her baby brother and had her own social worker for support, while the hospice nurses helped prepare Karen and Ryan for Rio's final days.

Being surrounded by staff and families who understood their grief made all the difference when he passed in January, 2018. He wasn't even two years old.

Even when he was gone, the support continued.

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"They kept looking after us right through until we said we were ready to leave. There was no, 'he's gone, so your room's got to be vacated now,'" Karen says.

Returning to the 'real world' was hard on her because, like so many bereaved parents, she felt isolated and like no one wanted to talk about Rio or what she'd been through.

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"I went back to the preschool mums that knew Rio and they were just staring. One of my really good friends said, 'I had to Google what to say to you because I don't know,'" Karen says.

Thankfully, she was able to return to Bear Cottage for help as she processed her grief.

"I still had this secret network of people that got it, and I didn't have to explain. I didn't feel isolated or ostracised, I had that safety net," she says.

Five years on, there's still a photo of Rio on the wall at Bear Cottage and Karen will never stop being grateful for the support she received there, but so many Aussie families miss out.

Over 28,000 Aussies aged under 21 are estimated to be living with a life-limiting condition, but there are only three children's hospice facilities in the country to support them.

It's just not enough and that's why the Fowler family started Rio's Legacy, a charity dedicated to advocating and raising money to support families of children like Rio.

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Ryan is currently embarking on his annual run/ride challenge from Brisbane to Sydney to push for awareness and funding, with the aim of building a new children's hospice in Western Sydney.

Karen, Remi, and the baby of the family Levi, three, are accompanying him on the trek to encourage families around the country to get behind the bittersweet cause.

Families of children with terminal illnesses deserve the same care and compassion the Fowlers got when Rio passed, but making change starts with having hard conversations.

"I know it's not an easy topic, but if you can make some space in your heart for some confronting feelings - it's going to hurt a little bit, but you're going to be able to give so much," Karen says. 

"If you can, just start a conversation about the need, share it on social media and find out what's happening with palliative care and terminal illness for children in your local area." 

Rio is still such an important part of their family and Karen hopes to see more care facilities built so no parent has to lose a child without the support she relied on when he died.

For more information and to support Rio's Legacy, visit the website here.