Butterfly Stickers Started Springing Up In NICUs – And This Is Their Heart-Wrenching Hidden Meaning

Now, hospitals around the world use the purple butterfly as a subtle symbol. Whereas some institutions may place stickers on newborns’ beds, others may tack them to the doors leading into certain patients’ rooms. Regardless of where they’re seen, though, these depictions of the winged insect are all there for the same reason.

And the woman behind the project, Millie Smith, chose the purple butterfly for a very specific reason. You see, in NICUs and nurseries the world over, blue represents baby boys; pink, by contrast, is typically used to denote newborn baby girls. So, the purple butterfly represents them both, as blue and pink combined creates an eggplant-colored hue.

But purple butterflies in the NICU signal more than just the birth of a baby. Smith came up with the concept after going through a tragedy herself, and now her idea helps parents in hospitals and facilities around the world as they finally begin to adjust to their new normal.

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, meaning the prospect was far from an unlikely one.

Then, ten weeks into the pregnancy, Smith and her partner Lewis Cann found out that her prediction had been true all along. Yes, it seemed that they would soon be parents to twins — in this case, a pair of identical girls. But, tragically, the baby bliss was shattered when Smith’s doctor performed an ultrasound examination only a couple of weeks later.

In 2016 Smith recalled to Today, “During the scan, the doctor didn’t say anything. I was very excited and loved seeing the little babies, but she was silent.” Owing to that reaction, then, the mom-to-be and her partner realized that something wasn’t right. Smith added, “Both Lewis and I immediately knew there must be a problem.”

And, unfortunately, the couple were correct. Smith and Cann’s doctor had to break some horrific news to the expectant parents, telling them that one of their daughters had a condition called anencephaly. The condition stops the neural tube from completely closing in a fetus, and this in turn means the brain doesn’t develop as it should.

Smith and Cann were understandably left crushed in the face of the diagnosis. In 2016 the then-mom-to-be told the BBC, “I was told one of my babies will have no chance of survival. My baby was only expected to live a few seconds.” That left her and Cann to make a crucial decision.

At this point, the pair pondered whether to terminate the fetuses, as even the surviving twin could potentially face problems during gestation. Ultimately, though, Smith and Cann decided to continue with the pregnancy – despite the fact that they’d have to suffer the loss of at least one of their daughters.

And not only did the couple decide to move forward, but they also gave their daughters names right away. The parents-to-be chose Callie and Skye – the latter intended for their daughter with anencephaly. And such an ethereal moniker made sense to Smith, as she explained during her interview with Today.

First, though, the expectant mom noted that it was important for her child with anencephaly to have a name regardless of how long she lived. She said, “Knowing [that my daughter] would only survive for seconds or minutes, I wanted her to be named during that time. Skye was somewhere we knew she would always be. We could look up at the sky and remember our baby.”

Then, at 30 weeks into the pregnancy, it was time for Smith to meet her daughters. She went into labor early and eventually required an emergency cesarian to bring Callie and Skye safely into the world on April 30, 2016, at the Kingston Hospital in Surrey in the U.K.

But Smith’s doctors knew what was ahead for Skye and the family she would eventually leave behind, and to this end a bereavement midwife was brought into Smith’s delivery room. And the new mom and Cann also had access to Kingston Hospital’s Daisy Room. This space was dedicated to parents whose newborns were critically ill or had passed away, and it gave mothers and fathers the privacy to spend their final moments together with their children.

Obviously, the delivery and the hours that followed were both highly emotional for Smith and Cann. Recalling this time during her interview with Today, Callie and Skye’s mom said, “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 then had a chance to say goodbye to Skye over a three-hour stretch. And Smith went on to describe this bittersweet period, adding, “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.”

Naturally, the new parents spoke to their daughter before she took her last breath. In 2016 Smith explained to Us Weekly, “We told [Skye] 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.”

But Smith did have one invaluable resource: her bereavement midwife Jo Bull. Speaking about Bull, the mom told the BBC, “She was there during the birth [and] when Skye passed away, [and she’s here] when I’m having a bad day.” And that’s precisely what the midwife had trained to do.

Bull said to the BBC, “My role involves helping women who have lost a baby before birth or [one] who subsequently dies. In Millie’s case, she knew what was going to happen, and I was involved quite early on.” Yet not every mom who experiences loss has such a support system in place.

Indeed, Bull stressed that while stillborn rates remain relatively steady in the U.K., there’s not always sufficient assistance for moms and dads who are bereaved in this manner. She revealed, “Although all midwives can support parents with what they are going through, the specific specialist role is not widely available.”

But even with the help of her bereavement midwife, Smith still struggled after delivering her twins. She not only had to deal with her grief at Skye’s passing, but also the uncertain fate of sister Callie, who had to remain in the NICU. And as new parents shuttled in and out of the hospital, the story of Smith and Cann’s twins became less and less familiar to ward regulars.

Smith added 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.”

One of these unaware parents would make a comment to Smith that cut her to the core. At the time, the mom was by Callie’s side in the NICU before the little girl eventually went home. Three pairs of twins were also on the unit, and at one moment all of the newborns burst into tears.

Then, when another mom saw Smith with only one baby to look after, she made an unknowingly harsh comment. Callie and Skye’s mother recalled this hurtful experience to the BBC, saying, “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.’”

After that, Smith couldn’t contain her emotions. She said to Us Weekly, “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 told the BBC that she realized the woman hadn’t meant to hurt her feelings, adding, “I know the mother would have felt bad if she knew how her words affected me.” Even so, the moment gave the new mom an idea for saving another grieving parent from 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.” And she quickly came up with a concept that would represent newborns who hadn’t made it. She envisioned displaying a butterfly sticker in a purple hue so that it could represent both baby boys and girls.

Arguably, 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.”

Smith also considered the butterfly symbol a way of letting others know about a loss if a bereaved parent didn’t feel up to telling all. Speaking to the Sutton & Croydon Guardian in 2016, she said, “Some days I didn’t want to talk about it, and some days I did. I thought there was something we could put to make people know it happened but that I didn’t want to talk about it.”

However, Smith wasn’t the only one who thought the purple butterfly – for “the babies that flew away” – was a good idea, as soon enough Kingston Hospital started to use the concept. And the mom had a plan in mind if other healthcare facilities eventually decided to follow suit, too.

Smith said to the BBC, “Instead of stickers, the butterflies will be printed on card and laminated. Each hospital would have a template to make these themselves.” These signs would provide an explanation to those unfamiliar with the symbol and could eventually be taken home by parents.

So, to make the butterfly vision a reality, Smith and Cann founded the Skye High Foundation. And they envisioned doing more than just sharing their sticker template with the world. In addition, the new parents wanted to bring in money to help other families who would go through the same pain of bereavement in the future.

Specifically, Smith and Cann wanted to drum up £10,000 — approximately $12,500 — to pay for a counselor based at Kingston Hospital. And the foundation got off to a good start after Smith revealed her purple butterfly vision on Facebook. Thousands of people shared that post, suggesting that the sticker idea had plenty of support.

For Smith, the Skye High Foundation provided a new purpose after the loss of one of her twin girls. She said to the BBC, “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.”

And it turned out that Smith was not alone in conceiving of a butterfly as a symbol of loss. As her Facebook post grew in popularity, another organization reached out. She explained, “I was also contacted by the Neonatal Research [group, which] has a Butterfly Project doing similar work to me.”

The idea has caught on, too, as Smith revealed to Us Weekly that over 100 hospitals had since got in touch with her about the butterfly concept. People around the globe have also donated to support the initiative as well as the Skye High Foundation’s other aim of helping families in their darkest hours.

Indeed, both Smith and her bereavement midwife have explained how pivotal such support is to moms and dads who had lost children. 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.”

And the butterflies would help solve another of the issues that all too often arises for grieving families. Bull further explained, “[Losing a newborn is] 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 that her butterfly scheme and other charitable efforts will help those grappling with major grief in the wake of bereavement. She said, “People don’t talk about a loss of a baby – they feel awkward. Even some nurses don’t know what to say.”

And as her butterflies appeared in hospitals around the world, Smith felt proud that her efforts had 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.”