Just weeks after Millie Smith and Lewis Cann discovered they were expecting twin girls, their joy turned to heartbreak when they learned that only one of their babies would survive.
On April 30, after enduring 30 weeks of a high-risk pregnancy, Smith gave birth to identical twins, Callie and Skye. Tragically, Skye lived for only three hours.
In the neonatal intensive care unit (NICU), Callie slept alone in her incubator, her grieving parents by her side. Among the other newborns in the unit, a mother of healthy twin babies, overwhelmed by her own experience, casually remarked to Smith that she was “so lucky” not to have two babies to care for.
Devastated by the comment, Smith struggled to find the words to explain the depth of her loss. But in that painful moment, she realized that Skye’s legacy was not just about grief—it was about helping others who had lost a child. This legacy took shape in the form of a purple butterfly.
In November of 2015, Millie Smith and her partner Lewis Cann received the joyful news that they were expecting their first child. With twins running in Smith’s family, she had a strong “gut feeling” that she would be carrying a pair. Just 10 weeks later, doctors confirmed that the couple was indeed expecting identical twin girls.
But less than two weeks after the excitement of anticipating the addition of two children to their home, the couple’s world was turned upside down when they were informed that one of their babies had a fatal condition and would not survive after birth.
“During the scan, the doctor remained silent. I was thrilled and loved seeing our little babies, but her silence was unsettling. Both Lewis and I immediately sensed that something was wrong,” Smith recalled.
Doctors delivered the heartbreaking news that one of the babies had anencephaly, a devastating birth defect that, according to the Centers for Disease Control and Prevention (CDC), affects about one in every 4,600 babies in the U.S. Anencephaly is a condition in which a baby is born without parts of the brain and skull. Tragically, nearly all babies born with anencephaly pass away shortly after birth.
Despite knowing that one of their daughters would not survive long after birth, and the significant risks posed to the other baby, Smith and Cann chose to continue with the pregnancy, fully aware of the challenges ahead.
Over the following months, they named their twins Skye and Callie. “We knew Skye had to have a name before she was born,” Smith explained. “Because we knew she would only survive for mere seconds or minutes, I wanted her to have a name during that precious time.”
Smith chose the name “Skye” as a tribute to the place where she believed their baby would always be. “We wanted to be able to look up at the sky and remember our little one,” she shared.
When Smith went into labor at just 30 weeks on April 30, an emergency C-section was necessary. To help them cope with their devastating loss, the couple was provided with a “bereavement midwife” during the birth and was given a special room, known as the “Daisy Room,” where families can spend precious moments with their baby before and after they pass.
“When the girls were born, both cried. This was an incredible moment because we had been told that Skye would not make any sound or move,” Smith recalled. “We were fortunate to have three hours with Skye before she passed away. We were cuddling her when she took her final breath. It was the worst moment of our lives. I’ve never felt heartbreak like that before. But I am proud that she fought so hard to spend those few moments with us.”
Born premature, Callie had to stay in NICU while she gained some strength and also in the unit were three other sets of twin.
“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,” Smith recalled.
One morning, a stressed mother whose twins were also in NICU, harmlessly said to Smith that she was “so lucky” to not have twins.
“None of the other parents knew what had happened or anything about Skye. The comment was entirely innocent, made more out of humor… They couldn’t possibly know that, at one point, I had two,” Smith reflected. “But that remark almost shattered me. I ran out of the room in tears, and they had no idea why. I couldn’t bring myself to tell them what had transpired. A simple sticker would have prevented that whole situation.”
It was in that heart-wrenching moment that Smith understood she needed to create something that would serve as a voice for parents who had lost a baby, ensuring such misunderstandings would never occur again.
She crafted a poster for the NICU, designed to inform both hospital staff and visitors that any incubator adorned with a purple butterfly symbol signified the loss of one or more babies from a set of multiples.
“I chose butterflies because they felt like the perfect tribute for babies who had flown away, and purple because it was a color that could be used for both boys and girls,” Smith explained.
The purple butterfly symbol—now part of the Skye High Foundation—has since spread to hospitals across several countries.
Celebrating Six Years of Remembrance
“Happy 6th Birthday to Callie and Skye. Six years since we welcomed you into the world 💜,” was shared by the Skye High Foundation on Friday, April 29, 2022.
Callie, now a joyful and spirited seven-year-old, continues to celebrate the memory of her twin, Skye. The memory of the twins lives on through purple butterfly cards and other initiatives designed to help families who have faced similar losses. The purple butterflies now take many forms—ornaments, cards, blankets, stuffed animals, and much more.
“Ultimately, I can never prevent this from happening, but the more support groups we create and systems we put in place, like these stickers, the better things will be. It’s the hardest thing anyone could endure,” Smith shared.
The loss of a child, at any age, is something no parent should ever have to endure. The world is fortunate to have individuals like Millie Smith, who are dedicated to helping others navigate the darkest moments of their lives.
Please share this story so others can understand the meaning behind a purple butterfly next to a newborn.
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