Whatever you need, we’ll make it happen

Two days before Emily died, her hospital room was transformed into a birthday party. For Melissa, it captured everything paediatric palliative care had given her family over four years: the chance to make precious memories together. 

When the palliative care team asked if there was anything they could do, Melissa knew immediately what she wanted. Emily had turned four a few days earlier, but she'd been in hospital and hadn't been able to celebrate with her twin sister, Eloise.  

“I said we'd missed her birthday.”  

Within hours, Emily’s hospital room was transformed. Balloons and birthday presents appeared, photos were pinned up, and food arrived for the relatives gathered around her bedside. Somewhere along the way, accommodation was organised for family who had travelled to be there, too.  

“It was so special to have that time with her,” Melissa says.  

The family had been told only the day before that Emily was at end of life.  

The next morning, she passed away.  

Two years later, Emily’s fourth birthday party is still one of the memories Melissa returns to most often. 

When Melissa was 28 weeks pregnant, an obstetrician noticed Emily’s brain wasn’t developing as expected. Tests were offered but Melissa and her husband had already made their decision. Whatever happened, they would continue the pregnancy.   

Emily and Eloise were born six weeks later. “Of course we were really concerned about Emily,” Melissa says. “But she just looked so beautiful.”  

Within a week of the birth, Melissa and her husband were called into a room full of doctors. “We knew straight away there was something seriously wrong going into that room,” Melissa says.  

There, they told the new parents that Emily had Miller-Dieker syndrome, a rare chromosomal condition that affects brain development. The doctors couldn’t tell them what her life would look like.   

“They said she might be with you for a week, or she might be with you for ten years. They didn’t know.” 

Melissa still feels the shock of it all. “I felt like throwing a chair at the window,” Melissa says. “It was just so horrible.”  

While her future was uncertain, Emily lived, day after day, week after week. “Staff started to call her ‘Legend Emily’,” Melissa recalls. Then, she surprised everyone. Emily went home with her family.  

Living with Miller-Dieker syndrome meant Emily had seizures, respiratory problems, and complex medical needs. When she became unwell, things could deteriorate quickly. But Melissa doesn’t recall those years through hospital admissions.

When she speaks of Emily and Eloise growing up together, she describes two little girls. Sisters with an unbreakable bond.  

“Eloise was always there beside her,” Melissa says. Emily couldn’t talk and she had limited vision, but she knew her sister. Whenever Eloise came close, Melissa says, her whole face would change. “Just her voice would make Emily smile,” she says.   

Paediatric palliative care became part of their lives when Emily was only a few weeks old. At first, Melissa didn’t understand why.  

The word ‘palliative’ felt confronting, and like it didn’t belong in their lives yet. “I was probably a bit confused, really,” she says. Emily was a newborn doing well, and they were taking her home, so Melissa says she wondered: “why did we need them at this stage?” 

Like many people, Melissa associated palliative care with death. But over time, she realised the team were focused on something else entirely. Life.  

They helped navigate appointments, equipment, and services. Occupational therapists and social workers became involved, and doctors visited the family at home. A specialised chair was organised, so Emily could sit up comfortably in the bath. While a bath chair may seem like a small thing, it was something that made a big difference to family life. It meant the girls could enjoy ordinary moments together.  

“Eloise had this beautiful, caring nature around Emily. She'd often just sit with her, hold her hand, and she loved to bathe her and wash her hair.”  

It’s the small things, like a bath chair, Melissa remembers most about the palliative care they received.  

The team understood that while comfort mattered, so did experience. “We never wanted Emily to be so medicated that she wasn’t enjoying her life,” Melissa says. “We wanted her to experience things.” And palliative care, says Melissa, were instrumental in finding that balance.  

There were handprints turned into jewellery. Photographs taken at birthday parties. Sculptures of tiny hands and feet. And importantly, Eloise was always included too.  

The family was also connected with Very Special Kids, the Melbourne hospice and support foundation, where Emily stayed for short periods of respite care.  

When Emily’s final hospital admission came, the palliative care team’s attentiveness didn’t waver.   

“I can barely remember it all now,” Melissa says. “It’s all a blur.” What she does remember, though, is that she never had to ask twice.  

Whether it was organising accommodation, supporting family members, simply sitting beside them, or helping create one final birthday celebration, the team’s response was always the same.  

“Anything we needed, they just made it happen,” she says.   

Today, that support hasn’t entirely disappeared. Eloise, now six, attends the sibling program at Very Special Kids. The family still takes part in events like Walk to Remember. And the people who supported them throughout Emily’s life remain part of the family story.  

Melissa often hears from parents whose children have recently been diagnosed with a life limiting illness, or recently been referred to paediatric palliative care. Many, she says, react in a similar way to how she did when palliative care was first mentioned. They hear the words and feel afraid.  

While she understands why, she also wishes someone had told her sooner what that support would actually mean for Emily and the family.  

Now, whenever someone reaches out, Melissa says she tells each family the same thing.  

“Don’t be scared of those words,” she says.  

“It’s not just end of life care, especially for children. It’s about comfort and having the best outcomes for your child.”

* The names used in this story are fictional and have been changed to protect the privacy of those involved.