A glance into the neonatal intensive care unit gives a glimpse of the most fragile of the hospital’s patients as they struggle to grow and survive. However, this time, your gaze falls upon something unexpected: a bed with a newborn occupant bedecked with a purple butterfly sticker. It’s not just meant for decoration – this little decal has a deep, heart-wrenching meaning behind it.
More than 100 hospitals around the world now use the purple butterfly as a subtle symbol in their NICUs. While some institutions place the decals in newborns’ beds, others tack them on the doors leading into certain patients’ rooms. Either way, the winged insect stickers carry the same meaning, regardless of where they’re seen.
The woman behind the project, Millie Smith, chose the purple butterfly for a very specific reason, too. In NICUs and nurseries the world over, blue represents baby boys, while pink bedecks newborn baby girls. The purple butterfly represents them both – blue plus pink combine to make the universal hue.
But purple butterflies in the NICU signal more than just the birth of a baby. Smith came up with the idea after going through a tragedy herself – one through which she could help others. And now, her idea helps new parents in hospitals around the world as they adjust to their new normal.
Millie Smith’s journey to the purple butterfly began in November 2015. At that time, she discovered she was pregnant — and, even without a doctor’s confirmation, she felt certain it was twins. Her family had a long history of multiple births, after all, and her motherly instinct kicked in early.
Ten weeks into her pregnancy, Smith and her partner, Lewis Cann, found out that her prediction had been true all along. The couple would soon be parents to twins, a pair of identical girls. But their baby bliss was shattered when Smith’s doctor performed an ultrasound examination only two weeks later.
As Smith recalled to Today in 2016, “During the scan, the doctor didn’t say anything. I was very excited and loved seeing the little babies, but she was silent.” With that, the mom-to-be and Cann knew that something wasn’t right. Smith said, “Both Lewis and I immediately knew there must be a problem.”
It wasn’t just any problem, either. Smith and Cann’s doctor had to break some horrific news to the expectant parents – one of their daughters had a condition called anencephaly. This defect stopped the neural tube from completely closing, which, in turn, prevents the brain from developing as it should.
The baby would not overcome such a defect, the doctor told Smith and Cann. the then-mom-to-be told the BBC in 2016, “I was told one of my babies will have no chance of survival. My baby was only expected to live a few seconds.” And so, the couple had an important decision to make.
Smith and Cann could have chosen to terminate her pregnancy, knowing one baby would not make it, and the other would face a slew of risks along the way because of it. However, the pair decided to continue onward with her very high-risk gestation, knowing they’d have to suffer the loss of at least one of their daughters.
Not only did the couple decide to move forward, but Smith and Cann gave their daughters names right away. They chose the names Callie and Skye, the latter moniker for their daughter with anencephaly. An ethereal name made sense to the parents-to-be – Smith explained their reasoning when she spoke to Today.
Smith first said that it was important for her baby to have a name regardless. She explained, “Knowing she would only survive for seconds or minutes, I wanted her to be named during that time.” As for the meaning behind Skye, she went on, “Skye was somewhere we knew she would always be, that we could look up at the sky and remember our baby.”
Smith was 30 weeks into her pregnancy when it came time for her and Cann to meet their daughters. The mom-to-be went into labor early and eventually required an emergency C-section to bring Callie and Skye into the world, which she did on April 30, 2016 at the Kingston Hospital in Surrey in the U.K.
Smith’s doctors knew what was ahead for Skye and the family she would eventually leave behind. So, they brought a bereavement midwife into Smith’s delivery room. The new mom and Cann had access to Kingston Hospital’s Daisy Room, as well. This space was dedicated to parents whose newborns were critical or had passed away, and it gave them the privacy to spend their final moments together.
Obviously, the delivery and the hours afterward were highly emotional for Smith and Cann – starting with the fact that they both survived childbirth. She recalled, “When the girls were born, they both cried. This was a huge moment, as we were told that Skye would not make a noise or move.”
In the Daisy Room, Smith and Cann had a chance to say goodbye to Skye over a three-hour stretch. Her mom said, “We were cuddling Skye when she passed away. This was the worst moment in our lives. I have never felt heartbreak like that before. But I am proud that she fought for so long to spend time with us.”
Smith and Cann took the time to express their regret to their newborn baby girl. She told Us Weekly in 2016, “We told her how much we loved her. And I told her I was sorry that I hadn’t created her properly. I felt like it was my fault. I knew it wasn’t, but I always felt guilty. We told her she would never be forgotten.”
Luckily, Smith did have one invaluable resource – her bereavement midwife, Jo Bull. As Smith told the BBC, “She was there during the birth, when Skye passed away, and when I’m having a bad day.” And that’s precisely what her midwife had trained to do for Smith and other grieving moms.
Bull reiterated, “My role involves helping women who have lost a baby before birth or who subsequently dies. In Millie’s case, she knew what was going to happen, and I was involved quite early on.” Of course, not every mom who experiences loss has such a support system in place.
Bull stressed the fact that stillborn rates remain relatively steady in the U.K., where Smith delivered her twin girls. Nevertheless, the country didn’t have specialist midwives in all of their hospitals. Bull said, “Although all midwives can support parents with what they are going through, the specific specialist role is not widely available.”
And even with the help of her bereavement midwife, Smith still struggled after delivering her twins. While tragic, Skye’s passing was expected, but her sister, Callie, survived — and remained in the NICU for weeks. As new parents shuttled in and out, the story of Smith and Cann’s twins became less and less well-known among ward regulars.
Smith explained to Today, “Most of the nurses were aware of what had happened, but as time passed, people stopped talking about Skye. After about four weeks, everyone acted as though nothing had happened, meaning the families around me had no idea about our situation.”
It was one of these unaware parents who made a comment to Smith that cut her to the core. At the time, she was by Callie’s side in the NICU before the little girl eventually went home. Meanwhile, three sets of twins filled out the unit – and all of them burst into tears.
One of the twins’ parents saw Smith with only one baby to look after and made an unknowingly harsh comment. As Callie’s mom recalled it to the BBC, “A parent who didn’t know what I’d been through turned to me and said, ‘You are so lucky you don’t have twins.’”
With that, Smith told Us Weekly that she couldn’t contain herself. She said, “Up until this point, I hadn’t cried in front of any of these parents. But that was it. I ran out of the room in tears. The comment absolutely broke me. I didn’t have the guts to go back in and tell her our story.”
Smith also told the BBC that she knew the woman didn’t mean to hurt her feelings. She explained, “I know the mother would have felt bad if she knew how her words affected me.” But the moment also gave the new mom an idea for saving another grieving parent the same heartbreak.
Specifically, Smith recalled thinking, “I felt there should be something like a small symbol to let people know that my baby had died.” She quickly came up with a concept that would represent newborns who didn’t make it – a butterfly sticker colored in purple, so that it could represent both baby boys and girls.
Having such a symbol would have protected Smith from that painful moment with the other twin mom. She told Babble, “None of the other parents knew what had happened or anything about Skye. I didn’t have the heart to tell them what had happened. A simple sticker would have avoided that entire situation.”
The butterfly symbol was a much better symbol of her loss than traditional condolences after a death, Smith thought. She told the Sutton & Croydon Guardian in 2016, “People kept saying ‘Rest in peace,’ but it’s quite morbid.” Instead, the sticker would “remember the babies that flew away,” she told Today.
And Smith wasn’t the only one who thought the purple butterfly was a good idea. Soon enough, Kingston Hospital started to use the symbol for the babies who had passed away. Smith hoped the butterflies would end up in every hospital in the U.K. The stickers wouldn’t just be applied without explanation, either.
Smith told the BBC, “Instead of stickers, the butterflies will be printed on [a] card and laminated, and each hospital would have a template to make these themselves.” The signs would inform others unfamiliar with the symbol what it meant. When it came time for parents to go home, they could take the card with them, too.
To make her butterfly vision a reality, Smith and Cann started the Skye High Foundation. They envisioned doing more than just sharing their sticker template with the world, though. The new parents wanted to raise money to help other families who would go through the same pain in the future.
To help other parents, Smith and Cann wanted to raise £10,000 — approximately $12,500 — to pay for a counselor at Kingston Hospital. However, it was Smith’s post, with its striking butterfly imagery, on the organization’s Facebook page that got people’s attention. Thousands of people shared it, showing the sticker idea had plenty of support.
For Smith, the Skye High Foundation provided her with a new purpose after losing one of her twin girls. She said, “Charity work was something very new to me as I was very career-focused, but I am learning every step of the way. It was my way of dealing with what had happened — it was a turning point for me.”
As for the idea of using a butterfly as a symbol, it turned out that Smith was not alone. In fact, as her Facebook post grew in popularity, another organization reached out to her. She explained, “I was also contacted by the Neonatal Research [group, which] has a Butterfly Project doing similar work to me.” Soon enough, she told Us Weekly that 115 hospitals now implemented the idea.
The fact that so many medical institutions supported the butterfly project surprised Smith. She said, “I thought it would just be our local hospital!” Instead, people around the globe have donated to support the initiative, as well as the Skye High Foundation’s other aim of helping families in their darkest hour.
Indeed, both Smith and her midwife, Bull, noted how pivotal such support was to families who had lost a baby. Bull told the BBC, “I think we should talk about [baby death] more, as the more we talk to friends, family and others, the more likely you might hear from someone who has gone through the same thing.”
The butterflies would help solve another of the issues that arises for grieving families. Bull further explained, “It’s only beginning to be talked about, but it’s still classed as taboo. The last thing people want who are going through this is for people to be ignoring it. It is terribly upsetting.”
No one knew that better than Smith, who hopes her butterflies and other charitable efforts open up a new conversation to help those grappling with major grief. She said, “People don’t talk about a loss of a baby – they feel awkward. Even some nurses don’t know what to say.”
So, as her butterflies appeared in hospitals around the world, Smith felt proud that her efforts started that very conversation. She concluded, “The thing I am most proud of is that it has got people talking about it. I want to support families, the butterfly idea, and anything else that can make a difference.”