Simone Machado spent more than a year refusing paediatric palliative care for her son Nicholas. Now, she wishes she hadn't.

It’s been eleven years since Simone Machado’s son, Nicholas, died of a rare neurodegenerative disease. Still, to this day, Simone sends an email every six months or so to the geneticist working to try and figure out exactly what it was. To put a name to it. The answer is usually the same - nothing new - but she keeps checking in anyway.

It’s this persistence that best sums up Simone and the way she mothered Nicholas for the entirety of his short life. It’s what got her through caring for him, by his side day and night, from the moment Nicholas experienced his first seizure.  And it’s what allowed her to, eventually, accept paediatric palliative care for him. Care, she says, she spent far too long refusing.

A rare and severe condition

“Nicholas was born fine, absolutely no problem,” Simone says. At five months old, his seizures began.

The diagnostic journey this kicked into gear reached some of Australia’s leading specialists but never reached a conclusion.

“The condition, whatever it is, was extremely rare and severe,” she says. So rare, she’s still waiting for a name. “It's 13 years without any information.” What they do know is the cause was neurological, genetic and degenerative.

His brain, Simone explains with a metaphor she says she created for her family to help understand, was like a large, high-definition television with no antenna. Everything was there. The connections just never worked. “His neurons were firing all the time, everywhere, but with no connection.”

After that first seizure, Nicholas never had a seizure-free day again. Simone cared for Nicholas through days when he had more than a hundred seizures, watching him lose skills as soon as he gained them. His care shifted from ordinary feeding to a stomach tube, a suction machine and full-time oxygen, and the family spent weeks and months in and out of hospital.

Refusing palliative care

The night Nicholas turned one, he was in hospital, in a coma brought on by a combination of many seizures and many medications given to try to stop them.

Because of the severity of that episode, the paediatric palliative care team came to see the family on the ward.

Simone had already formed an idea of what their presence meant. Next door, she could see ‘a dying boy, absolutely, literally dying’, and she had watched the same team walk out of his room.

“Palliative care, in my mind, was for dying people,” she says. “I didn’t have a diagnosis. I didn’t have a prognosis… My first words to them were ‘go and look after the kids that are dying, not my kid’.”

She and her husband Sergio refused paediatric palliative care that night. Then, they kept going, just the two of them and Nicholas.

Caring alone

With no family in Australia and no real support outside of each other, there was no reprieve.

Simone wouldn’t leave Nicholas’s side, because any moment could bring another seizure.

“I wouldn’t go to the toilet without bringing him with me, because he would have seizures all day, every day,” she says. “I didn’t sleep. Almost didn’t sleep at all. I was with him 24/7, literally.”

She taught herself almost everything: how to manage his feeding tube, how to put in urinary catheters, how to use the suction machine, how to draw up and give morphine. Simone did it because she had to, and because that sense of control over his care was one of the few things she had to hold on to.

But with that self-sufficiency came loneliness and exhaustion, says Simone. The feeling of carrying the load almost entirely on her own.

Lost in translation

Language made everything harder. Simone hadn’t been in Australia long when Nicholas first became ill, and English - especially medical English - didn’t always reach her. She hadn’t known the word ‘seizure’; she had been calling it ‘chronic’. The first time a nurse said Nicholas was having a “fit”, that word was unfamiliar too.

“There was a lot of language barrier that I faced,” she says. “Even the name of different seizures; I wasn’t even aware of them.”

Her cultural background shaped how she showed up in the health system more broadly too. A hands-on primary carer, someone who needed to be part of the process, Simone sometimes found herself at odds with nursing staff who saw her involvement as doing their job.

“I needed to feel I was being part of something,” she says. “I never was impolite, but some nurses wouldn’t let me help. Even just to change the bed sheets.”

Accepting paediatric palliative care

More than a year after that first referral, Simone and her husband finally accepted palliative care support. The weight of Nicholas’s care had become something she and Sergio could no longer carry alone.

“I was still not convinced it was a good idea, but it was getting too hard.”

Looking back, she explains her understanding of palliative care now with a metaphor she created herself.

“Life is like a flight,” she says. “You board with a destination in mind, but then turbulence hits - an illness - and the route changes. You can’t get off the plane. You’re still in the same flight, with the same turbulence. But you are upgraded to business class. It’s the same journey, but now someone brings you a blanket. Someone asks what you need. Someone is there. That’s palliative care. That’s what it means.”

In practice, it meant a direct line to Nicholas’s doctor at any hour of the night. It meant arriving at the emergency department in crisis, a team ready to receive them. No triage, no repeating the full history from scratch.

“As soon as we were linked to palliative care, I just needed to say, ‘Nicholas is not breathing well, I’m bringing him in.’ When I got there, the bed was organised… We went straight to the assessment.”

Being able to die at home

As Nicholas's condition deteriorated in his final weeks, that support became the thing that made it possible for him to die at home.

There was no paediatric hospice available to them in Queensland at the time; Hummingbird House, the state’s specialist children’s hospice, had not yet opened. But with palliative care support, Simone had everything she needed to care for Nicholas at home. So when his paediatrician offered a room in the hospital, she declined.

“I said, I am his nurse, and I am his mum. I want to be home,” she says. “I had all the equipment. I had palliative care. I had a direct contact. For privacy, and honestly, to be in control of what was happening, I decided to look after him at home.”

Nine months after accepting palliative care, Nicholas died at home with his parents by his side. He was two years and ten months old.

With different eyes

“I wish I had the knowledge I have now,” Simone says. “That I had listened, seen with different eyes, not with the preconception that palliative care is for dying people. It would not have changed Nicholas passing. But it would have made my life much easier.”

Now, she speaks openly about her family’s experience because she understands what a difference an open conversation, had earlier and without fear, could have meant for them.

“People need to understand, in simple words, what palliative care is,” she says.

“Palliative care is upgrading you to first class.”

For more information about paediatric palliative care, visit the Paediatric Palliative Care website.