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The beautiful meaning behind the purple butterfly stickers in Australian NICU cribs.

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For his first few weeks of life, Billy Travers lay nested inside a hospital crib. Born on October 18, 2017, at 35 weeks, his little body was supported by a breathing device, his chest linked to machines monitoring his slow-beating heart.

But beyond the tubes and wires, Billy’s crib also held a sticker. A simple purple butterfly, hovering just beside his head.

That sticker was given to his parents, Harriet and Leon Travers, by staff at Canberra’s Centenary Hospital; a simple, heartfelt gesture acknowledging Billy’s twin brother, Tommy, who for three short days had lain in a crib alongside him.

The Purple Butterfly Initiative.

The Purple Butterfly initiative was launched by the Australian Multiple Births Association in 2016 as a means of supporting families who have experienced the unique pain of losing baby from a set of multiples (twins, triplets, etc.) In 2014, there were 300 such deaths in Australia.

“We partnered with the UK-based Skye High Foundation to promote the Purple Butterfly in Australia, to gently remind staff and visitors to NICU/PICU/Maternity wards, that some parents may be grieving,” AMBA Advocacy and Awareness Director, Daniel Fairfull-Smith, told Mamamia. “It also ensures that families are given the support and understanding that they need from staff, visitors, and other parents.”

The AMBA sends Purple Butterfly packs (bundles of the stickers, posters, and bereavement brochures) to hospitals free of charge. So far, 44 such packs have been distributed to hospitals around the country, with an additional 26 sent directly to midwives and families.

For Canberra mother Harriet, being given the sticker meant recognition that her little boy was – is – twin, that she and Leon are parents of three.

Their Tommy died on the morning of October 20, 2017. His death was unexpected, and more than a year later the cause remains unknown.

Hospital staff helped them take final photographs of Billy and Tommy together. Image: Supplied.
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"On day three his heart-rate just stopped, and they couldn't get it going again," Harriet, a registered nurse, told Mamamia. "[The hospital staff] were amazingly supportive. They let us hold him. They cleared an entire room where we sat with him for the whole day, and all our family and friends that could be there were allowed in and out. They quietly, in the background, took photos for us. They took Billy out of his crib and made sure we got photos of them together."

In the days that followed, they also offered Harriet and Leon the purple butterfly sticker for Billy's crib. When he moved to a special care centre closer to home, staff there did the same. Their now five-year-old son, Lachlan, was even able to decorate it.

"It meant that Tommy's existence wasn't being ignored," she said. "Also, being a twin is something quite special, and [the sticker meant Billy] was getting that identifier even though he didn't have his twin with him. That was really important to us, because you get categorised as this special twin pregnancy, twin mum, twin family, and then all of a sudden you've lost one, and you feel like you've lost this whole part of your identity. That [purple butterfly] was a way to keep that identity going for us."

Harriet, Leon, Lachlan and Billy. Image: Supplied.

The sticker also helped Harriet and Leon start conversations with people who came to visit Billy.

"In a way, it allowed us the permission to talk about it, and even though you could tell a lot of people were obviously uncomfortable - because let's face it, adults just suck at talking about anything emotionally driven - it definitely helped started that conversation and helped us feel like we were keeping his memory alive," she said.

A unique kind of grief.

It was weeks before Harriet and Leon were able to truly feel the happiness of Billy's birth. A feeling that found its way through the overwhelming shock and anguish brought by his brother's death.

"We were coming home to a nursery ready for twins and staring at it, thinking, 'Well, crap. What are we going to do with all this stuff?' Your shock response makes you start think practically, so I was thinking 'OK, we'll have to get a different pram, and we've got to return this, and...' People wonder why you're worrying about that," she said. "But you want to think about it, because it's easier."

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When the shock eased it was pure, raw grief. Harriet's own, that for her family, and especially for Billy.

Talking openly about Tommy has helped them navigate through it, and they plan to continue that as Billy gets older. She and Leon have been encouraged by conversations with Lachlan, whose practicality has made it easy to discuss.

Billy on his and Tommy's first birthday. Image: Supplied.

"He's very good at telling people [about Tommy]," she said. "He'll tell people in Woollies - 'We had two babies but one died'. It's so matter-of-fact that it takes people aback. But at the same time, I'm not going to tell him to stop... I'm not ashamed of the fact that my son died. But for some reason it seems to exist under this shameful kind of umbrella.

"I've spoken to other mothers in similar situations who've lost children and all they want to do is talk about them, but they feel like they can't. And that's sad."

She would like to see a Purple Butterfly pin that could help encourage conversation beyond the NICU. But until then, should you learn that a parent has lost a twin or triplet, Harriet urges you not to shy away from asking about them.

"I think most people don't necessarily want or need a hug, or a shoulder to cry on, or someone to bring them lasagne," she said. "What they really want is just someone to sit down and talk to them as if their child were still here and ask them a bit about them. Help them feel like they did really bring something to this world that meant something."

For more information Purple Butterfly packs, please visit https://www.amba.org.au/organisation/about/amba-news/purple-butterfly-launch.

To learn more about the Australian Multiple Birth Association visit the website.

SANDS helpline: 1300 072 637
Red Nose Grief and Loss helpline: 1300 308 307

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