Glance into any neonatal intensive care unit, and you can expect to see some of the most fragile of a hospital’s patients struggling to grow and survive. But then your gaze falls upon an unexpected sight: a cot that’s decorated with a purple sticker in the shape of a butterfly. And this little decal isn’t just for show, either, as there’s actually a deep and truly heartbreaking meaning behind their use.
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 little pictures 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 create an eggplant-colored hue.
A sign of difficulty
But purple butterflies in the NICU signal more than just the birth of a baby. Millie 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.
How it came to be
Millie’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 chances were relatively high.
Right all along
Then, ten weeks into the pregnancy, Millie 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 Millie’s doctor performed an ultrasound examination only a couple of weeks later.
In 2016 Millie 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. Millie added, “Both Lewis and I immediately knew there must be a problem.”
And, unfortunately, the couple were correct. Millie and Lewis’ 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.
A very brief life
Millie and Lewis 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.
Suffering was inevitable
At this point, the pair pondered whether to terminate the fetuses, as even the surviving twin could potentially face problems during gestation. Ultimately, though, Millie and Lewis decided to continue with the pregnancy — despite the fact that they’d have to suffer the loss of at least one of their daughters.
Naming the babies
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 name made sense to Millie, as she explained during her interview with Today.
First, 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 Millie 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 Millie’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 Millie’s delivery room. The new mom and Lewis 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.
The first moments
Obviously, the delivery and the hours that followed were both highly emotional for Millie and Lewis. 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.”
Fighting to stay
In the Daisy Room, Millie and Lewis then had a chance to say goodbye to Skye over a three-hour stretch. And Millie went on to describe this bittersweet moment, 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. “We told [Skye] how much we loved her,” Millie explained to Us Weekly in 2016. “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.”
Support when she needed it
But Millie did have one invaluable lifeline: her bereavement midwife, Jo Bull. Speaking about Jo, 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.
The midwife’s duties
Jo 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.
Not enough help
Jo stressed that while stillborn rates remain relatively steady in the U.K., there’s not always enough assistance for moms and dads who are bereaved in this manner. She said, “Although all midwives can support parents with what they are going through, the specific specialist role is not widely available.”
Life in the hospital moved on
But even with the help of her bereavement midwife, Millie 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 Millie and Lewis’ twins became less and less familiar to ward regulars.
Acting like nothing happened
“Most of the nurses were aware of what had happened,” Millie told Today. “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.”
A heartbreaking comment
One of these unaware parents would make a comment to Millie that cut her to the core. At the time, Millie 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.
The wrong thing to say
Then, when another mom saw Millie 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, Millie 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.”
“I know the mother would have felt bad if she knew how her words affected me,” Millie told the BBC. Even so, the moment gave the new mom an idea for saving another grieving parent from the same heartbreak.
The purple butterfly
Specifically, Millie 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 purple butterfly sticker so that it could represent both baby boys and girls.
A simple sticker with a big impact
Arguably, such a symbol would have protected Millie 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.”
An important message
Millie 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.”
The hospital agreed
But Millie 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.
Adapted for each hospital
“Instead of stickers,” Millie said to the BBC, “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.
Above and beyond
So, to make the butterfly vision a reality, Millie and Lewis founded the Skye High Foundation. And they envisioned doing more than just sharing their sticker template with the world. The new parents also wanted to bring in money to help other families who would go through the same pain of bereavement in the future.
A good cause
Specifically, Millie and Lewis 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 Millie revealed her purple butterfly vision on Facebook. Thousands of people shared that post, suggesting that the sticker idea had plenty of support.
A turning point
For Millie, 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 Millie was not alone in using 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.”
Really taking off
At the time of Millie’s interview with Us Weekly in 2016, 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.
Both Millie and her bereavement midwife have explained how pivotal such support is to moms and dads who have lost children. Jo 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. Jo 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.”
A difficult topic
No one knew that better than Millie, 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.”
What Millie is most proud of
And as her butterflies appeared in hospitals around the world, Millie 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.”
But the purple butterfly isn’t the only symbol that has been put to good use. So, if you spy someone out and about wearing one particularly eye-catching adornment while you’re going about your daily business, you should be aware what the flower emblazoned across the accessory actually signifies.
Spotting the lanyards
Perhaps you’re standing on a train platform, passing through airport security or in line to check out with your groceries. You then notice someone else nearby with a sunflower-covered lanyard dangling from their neck. And as we’ll find out, they’re wearing this item for a very important reason.
Where it started
It all started in 2016 at Gatwick Airport in London, England, when passengers started showing up with the lanyards around their necks. The design was unique and bright enough to grab people’s attention. The buttery yellow sunflowers popped against the green background, sending an important message to those around the wearer.
Its creators had devised the sunflower lanyard as a subtle way of sending a message about the wearer or someone with them. And because the scheme was so effective in its mission, it began to spread. From the U.K. it made its way overseas to the U.S., where you can find people nationwide donning the green-and-yellow neckwear.
Sending a message
But what do the sunflower lanyards mean? They’re meant to send a message to airport staffers, but it’s important for other passengers to know what their significance is, too. So, read on to find out — and keep an eye out for these accessories on your next trip to the airport, train station, hospital or other public space.
Lots of people
London’s Gatwick Airport said that it saw a whopping 46.6 million passengers pass through in 2019 alone. Furthermore, it has services from the U.K. capital to more destinations than any other airport in the country, according to data flight information company OAG. Perhaps because they see so many people, the Gatwick staff started thinking about how they could better serve their customers.
Meant to help
Workers then cottoned on to a big idea in 2016 — lanyards covered in sunflowers, which passengers could wear as a discreet symbol. Of course, airport staffers would be briefed on the accessories and what they meant, so that they could best serve wearers without drawing attention to them.
Spreading far and wide
The sunflower lanyard scheme proved to be a success in Gatwick, and it soon spread to other airports. Every single major airport in the U.K. eventually adopted the flowery accessories, as did rail stations, grocery stores, leisure centers, businesses and the police force. An international expansion took place, too.
Nearly 5,000 miles away from the British capital, the first lanyards came into use at the Seattle-Tacoma International Airport in 2019. At the time, it was the first U.S. airport to bring out the sunflower-covered neckwear. And, according to statistics, Americans could really use such a resource.
One in four people can wear one
Sea-Tac began to use the lanyards in October that year, and the number of people who could benefit from such a scheme is considerable. In 2018 the Centers for Disease Control and Prevention revealed that one in four American adults would qualify to wear one. As such, a major portion of the population could benefit from having these accessories, especially considering that one-in-four figure didn’t even factor in the children eligible to don one.
Made it to NYC
In early 2020 New York City’s JFK Airport — specifically in terminal four — became the first in the northeast to bring in the sunflower lanyards. Travelers passing through could request a lanyard to wear as they made the journey to their planes. Meanwhile, the airport’s CEO Roel Huinink was pleased by the update.
Helping some customers
Huinink told the International Airport Review in February 2020, “At T4, we are always looking for ways to better serve our passengers, and we are proud to be the first air terminal in the northeast to participate...” On top of that, he hoped that adding the sunflower lanyards to at least part of JFK would “help to make our customers’ journey as seamless and comfortable as possible.”
And in January 2020 Copenhagen Airport joined the scheme, too. Staffers knew that bringing in the lanyards would help alleviate the major anxieties that come with air travel. In a statement at the time, the airport’s team said, “Procedures such as check-ins, security checks and boarding the aircraft can be a stressful experience for all travelers.”
Staff as well
But for those eligible to wear the sunflower lanyards, the experience can make it all the more difficult, the statement went on. That’s why implementing the neckwear program has proven to be a boon to the airport. And it’s not just to the passengers who use it; the Copenhagen-based staff have found it to be beneficial to them, too.
The airport has trained roughly 25,000 staffers who come from the 1,250 businesses that operate out of the terminals. Lanyard-wearing passengers have complimented their skills post-training, but the program has also started a conversation among employees. Service excellence director Stine Marsal explained to Flight Chic in January 2020 that “it has had an incredibly positive effect internally between colleagues.”
The sunflower lanyard program doesn’t just provide representation that’s passenger-centric, however. Marsal went on, “We have also noted that it has had an incredibly positive effect internally between colleagues. People with hidden disabilities and diagnoses are not just our customers. They are also ourselves. They are our families and those closest to us.” And that’s precisely why the lanyards have started to pop up in more places globally.
On the railway
As previously mentioned, the U.K. especially has seen the sunflower lanyards appear in more than just airports. Two years after the launch at London Gatwick Airport, the country’s rail system also became part of the green neckwear scheme. At the same time, national supermarkets and hospitals tried them out, too.
In 2019 the U.K. saw sports venues, shopping centers, banks, and insurance companies join the scheme. The sunflower lanyard-making organization also opened up a website so people could purchase the neckwear, too. Its Facebook page raked in 25,000 fans within days, and that’s how they started garnering international attention and intrigue for the program.
In Europe now, too
And, now, as we know, the sunflower lanyards have made their way out of the U.K. and into countries in Europe and across the pond. As of May 2020, they are also in Australia, Argentina, and South Carolina, U.S. There are 991 sunflower-recognizing locations in Europe — with spots in Spain, Italy, Sweden, Lithuania, and the Netherlands.
Still, all of the aforementioned information leaves out the most important part of the sunflower lanyard scheme. More than one million of the accessories have been doled out by businesses and the organization itself. As such, you should know what they mean before you come across one.
The sunflower lanyards stemmed from a conversation at London Gatwick Airport which took place in 2016. According to the program’s founders, they wondered, “How can we recognize that one of our passengers may have a non-obvious disability?” And, from there, the discreet symbol was born.
Could help a billion people
The Hidden Disabilities Sunflower symbol could be of use to a billion people worldwide. The World Health Organization estimates that this is the number of people who live with some form of impairment. Another survey conducted in the U.S. found that nearly three-quarters of Americans have disabilities that don’t come with a visual signal — such as a wheelchair.
Giving people the help they need
Many public spaces have already considered the challenges for people who have visually signaled conditions. For example, airports will be wheelchair-accessible, and they’ll have signage available in braille. But it’s not as easy to design a user-friendly system for those with invisible disabilities such as chronic pain or fatigue.
Struggling with labels
Plus, 88 percent of those with invisible disabilities shied away from sharing their struggles with others, according to a 2011 Canadian study quoted by the BBC. Disability charity service manager for Scope Guy Chaudoir explained to the British broadcaster in 2017, “People worry about being labeled. One of the hardest things is putting pressure on yourself to achieve, and being afraid to ask for help, to say, ‘I can’t do this today.’”
The sunflower lanyards aim to remove that stress from travelers, though; it’s a discreet symbol that airport staffers will instantly recognize. The person in need can wear it, or another member in the party can don the lanyard to signal that someone in their group has an invisible disability.
Knowing someone needs help
The sunflower gives airport staff a chance to ask travelers how they can assist them through to their gates in a comfortable way. Sea-Tac’s airport spokesman Perry Cooper put it simply in a 2019 interview with U.S. News & World Report. He said, “Maybe this customer needs a little more help. Maybe this is why they're speaking slowly, or reacting in a different way. This is for those people who need some extra help that is not readily recognizable.”
Gatwick’s accessibility manager Jack Bigglestone-Silk explained to the magazine that they had chosen the sunflower because it would be instantly recognizable to those cognizant of the scheme. And those airports participating in the program will have a full roster of staffers who see the flowers and know what to do.
Bigglestone-Silk said, “So we now provide free training on accessibility to all organizations on the airport campus to ensure consistent standards all the way through the airport journey. This includes training on how to recognize our lanyards and what to do if you see someone wearing one [who] needs a little extra help.”
Preventing stressful situations
Prior to the sunflower scheme, such instant understanding would be hard to come by. Talking to U.S. News & World Report, mom-of-three Jennifer Vertetis recalled a particularly stressful journey with her autistic son Peter, who was then aged 16. A Transportation Security Administration (TSA) official had tried to pull her into a private room for a more thorough search, which triggered the mom’s nerves — and her son’s, too.
Having to explain
Vertetis claimed that she begged the TSA agent to allow her son in the room — trying to explain why he had acted the way that he did. Plus, she needed the search to happen quickly, as she needed to keep her family’s travel schedule on track for take-off.
A “constant battle”
Vertetis said, “People with autism often need more time and coaxing to go through the expected tasks while in an intense environment with new rules. As parents, we find ourselves in constant battle mode to get through the airport.” And the mom-of-three said such struggles didn’t start and end with the TSA, either.
Needing more time
Vertetis added that families might take longer to get prepared for a security scan, removing belts and unbuckling coats. Or, they might need to stagger their line-up through the body-scanning device, as a child with an invisible disability might panic if going last or run away if they’re first through the gate.
A much-needed symbol
All of the aforementioned issues could annoy other passengers who also have to get through TSA checkpoints, Vertetis said. An invisible disability could make it harder for a child or adult to get through it all quickly because staff don’t know that they have a condition. But sunflower lanyards could provide that visual signal.
Vertetis foresaw big changes as the sunflower scheme became more prominent. She said, “Really, I think that is the most impactful thing the sunflower lanyards will do. It will make people aware. There is genuine compassion from other passengers, airline staff, security and TSA once they understand they are working with someone who has a disability.”
And for some organizations, the lanyards were just the beginning. U.K. grocery supermarket Sainsbury’s implemented a disability awareness program in 2019 in conjunction with one for autistic customers especially. The company called it Autism Hour – cultivating a calming environment by removing or reducing any background noise.
A big difference
Autism Hour showed that sunflower lanyards were just one piece of the awareness-raising puzzle. The National Autistic Society’s Tom Purser told the website B31 Voices that the event was “an opportunity for businesses and the public to learn about the small things they can do to help create a society that works for autistic people.” He added, “It’s often the smallest change that makes the biggest difference.”
The sunflower lanyard is a small, but impactful change. Those in need of one can typically get it from an airport assistance desk, although each one will vary. At Sea-Tac, for example, there are helpers called Pathfinders who wear teal and have sunflower lanyards that they dole out to flyers.
Where you’ll find them
Participating grocery stores will probably have some lanyards on hand at their customer service desks, while smaller shops will have them on-hand at the checkout lanes. If you can’t find one in person, then head to the Hidden Disabilities website, where they sell them and other sunflower-covered accessories.
Making everyone more comfortable
Even if you don’t need one, though, it’s important to know what the lanyards symbolize — and be understanding of those who might need a little more time or attention. Doing so will continue the program’s mission, Hidden Disabilities’ CEO Paul White told the International Airport Review. He said, “We believe this system will create a more comfortable and positive airport experience for people who have disabilities that might not be visible.”
Revealing people’s hidden needs
So far, fans of the scheme — including advocates for those with autism and other conditions — have found that the lanyards do boost awareness. It’s not just for the fact that people need extra time, though. Others now realize that invisible disabilities face a slew of challenges, even if they’re not obvious from the outside.
What others can do
Lene Andersen — who is a blogger and health advocate — said it best when she spoke to U.S. News & World Report. She highlighted how everyone can help, saying, “Other passengers can be helpful by being more aware that invisible disabilities happen. Once you know that anyone could need help, you become more aware and more generous with offering [it].”