Staff at the Children's Hospital at Westmead describe what it's like working with dying children.

Staff at the Children's Hospital at Westmead describe what it's like working with dying children.

HOW do you tell a young boy or girl they’re dying?

What about their siblings — how do you explain to them that a brother or sister is never coming home?

Parents need managing, too, as they straddle the line between honouring their grief and holding the family unit together.

It’s an unspeakable burden but, for staff in this building, delivering heartbreaking news is their nine-to-five. Then they attend the funerals of their tiny patients.

“They’re always hard,” clinical nurse consultant Jude Frost says.

“You never get used to it. You never get used to the sadness and the distress that you see on people’s faces. It’s incredibly difficult. It’s indescribable.”

For 15 years Ms Frost has given everything to young people who were handed a raw deal.

She spends every day at the palliative care unit of the Children’s Hospital at Westmead, in Sydney’s west, where positive outcomes are rare — maybe one every three years, staff say.

She’s part of a 14-person team whose membership means staring death in the face and smiling, telling the most fragile members of society that mum and dad will be OK without them and making every minute count when time is so precious.

“It’s never going to be OK but I hope I can make it a bit easier,” bereavement co-ordinator Natasha Samy says.

She spends her time with the families of dying children, helping them manage before and after death.

Recently, that means reading to them from books you won’t find in a normal library, books designed to break down the difficult conversations about death in to language children understand.

The Memory Garden series, which Ms Samy authored, tell the story of three perspectives — Iris, who has a life-limiting illness, and Hazel and Leo, Iris’ brother and sister.

“The story really is about how all three children learn that she’s going to die and the fact that she does die,” Ms Samy says.

“They try to normalise what children might be feeling when they’re going through that.”

But she admits: “A child dying is not normal”.

“It’s very hard to come to a place of acceptance that that’s what’s happened,” she says. The families feel it but so do the carers in this part of the hospital.

“It’s quite difficult for all of us when a child dies, especially when you’ve formed that relationship with them. Even though it’s not my child, or a child in my family, I still have that reaction that this is a person that I’ve known and they’ve died.

“Sometimes it does affect you and it affects you for days afterwards. But I think that’s normal because it just shows that you’re a human and you’re working with human emotions in this work.

“There is an impact and we have to acknowledge it but I can see a value in our work, that’s what keeps us going.”

Ms Samy said there were special days, despite knowing death was on the horizon.

“It’s really special when a child can open up to you,” she said.

“When they talk about how scared they are or how worried they are about their parents.”

Children worrying about their parents is common. They’re often more concerned about the family than their own situation. Some need constant reminders that they’re dying — staff use the word death rather than telling children they’re “going to sleep” — but most understand the concept of death quickly.

“Contrary to what people think, children know that they’re sick and they often know that they’re dying,” Ms Frost said.

“Children are incredibly brave. They can be lying in bed crying and the next day they’re out doing whatever it is they like doing. They’re an inspiration. You draw your own inspiration from them.

“It’s a privilege really.”

So too is attending the funerals. Staff say it’s an emotional experience but it’s something they feel is necessary. Ms Samy calls it “a mark of respect” for the children who were once in her care and a show of support for the bereaved.

“Those days are bad days, you lose a night’s sleep when you’re having days like that,” Ms Samy said.

Then, the next day, sleep or no sleep, she will be back in the office to make a child’s day special. Or, at least, “a little less horrible”.

“(Death is) going to happen whether we’re there or not but we can sometimes help to make what’s going to be really horrible, a little bit less horrible.”

The Memory Garden Books are available through The Children’s Hospital at Westmead KidsHealth Bookshop.