Just a few weeks after Millie Smith and Lewis Cann found out they were expecting twin baby girls, they received the heartbreaking news that only one of the babies would make it.
On April 30, after 30 weeks of a challenging pregnancy, Smith gave birth to identical twins named Callie and Skye. Sadly, Skye only survived for three hours.
In the neonatal intensive care unit (NICU), Callie was sleeping alone in her incubator while her caring but sad parents kept a close eye on her. Nearby, a mom with healthy newborn twins, feeling a bit overwhelmed, casually mentioned to Smith how “lucky” she felt not to have two babies.
Feeling overwhelmed by what she heard, the new mom struggled to express her sadness. But then it hit her that Skye’s memory was meant to support other families who go through the pain of losing a child, and it showed up as a beautiful purple butterfly.
In November 2015, Millie Smith and her partner Lewis Cann discovered they were going to be parents for the first time. Since Millie has twins in her family, she had a strong feeling that she might be having two babies. Just 10 weeks later, the doctors confirmed that she was indeed expecting identical twin girls.
Just under two weeks after the thrilling news that they would be welcoming two children into their home, the British couple was heartbroken to find out that one of their babies had a serious illness and wouldn’t make it after being born.
Smith said, “While the scan was happening, the doctor didn’t say a word. I was super excited to see the tiny babies, but she stayed quiet. Right away, Lewis and I realized something must be wrong.”
Doctors announced that one of the babies was diagnosed with anencephaly. The Centers for Disease Control and Prevention (CDC) states that this condition happens in about one out of every 4,600 babies in the United States. Anencephaly is a severe birth defect where a baby is born missing parts of the brain and skull, and sadly, nearly all babies with this condition do not survive long after they are born.
The couple understood that one of their babies would not survive long after being born, and they also knew there were dangers for their other baby. Despite this, they chose to continue with the very risky pregnancy.
In the following months, Smith and Cann decided to name their twins Skye and Callie. Smith shared, “We realized that Skye needed a name before she arrived. Since we knew she might only live for a few seconds or minutes, I wanted her to have a name during that brief time.”
The meaning behind “Skye,” she explained “was somewhere we knew she would always be, that we could look up at the sky and remember our baby.”
When Smith went into labor unexpectedly at just 30 weeks on April 30, she had to have an emergency C-section. To cope with their loss, the couple had a special “bereavement midwife” with them during the delivery. They were also placed in a unique room called the “Daisy Room,” where families can spend precious moments with their baby before and after they pass away.
When the girls were born, they both let out cries. It was a big deal because we had been told that Skye wouldn’t make any sounds or move at all, said Smith, who felt grateful to have three hours with Skye before she passed away. “We were holding Skye when she took her last breath. That was the hardest moment of our lives. I’ve never experienced such deep heartbreak. But I’m proud that she fought so hard to be with us for that time.”
Born premature, Callie had to stay in NICU while she gained some strength and also in the unit were three other sets of twin.
Many of the nurses knew what had gone on, but as time went by, people began to forget about Skye. After around four weeks, it felt like nothing had ever happened, which meant that the families nearby were completely unaware of what we were going through, Smith remembered.
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 had any clue about what had happened or who Skye was. The remark was totally harmless and just meant to be funny. They didn’t realize that I once had two. Smith went on, “But that comment almost made me fall apart. I dashed out of the room crying, and they had no idea why. I just couldn’t bring myself to explain what had happened. If only a simple sticker had been there, it could have prevented the whole mess.”
It was in that moment Smith realized she had to create something that would speak for parents who had just lost a baby, ensuring the misunderstanding never happens again.
She created a poster for the NICU to inform both hospital staff and visitors that if they see an incubator with a purple butterfly on it, it means that one or more babies from a set of multiples have sadly passed away.
“I chose butterflies, as I felt it was fitting to remember the babies that flew away, the color purple because it is suitable for both boys or girls,” said Smith.
The purple butterfly concept–now under the Skye High Foundation–has spread to hospitals in several countries around the world.
Callie is a cheerful and energetic seven-year-old now. The memory of her twin is kept alive through purple butterfly cards and other projects that support families with babies like Skye around the globe. These purple butterflies have transformed into many different items, such as decorations, greeting cards, blankets, stuffed toys, and much more.
“Ultimately I will never be able to stop this from happening but the more support groups we can set up and put things in place like the stickers the better it will be. It’s the hardest thing anyone has to deal with,” Smith said.
Losing a child of any age can’t be easy for a parent and the world is blessed for people like Millie Smith who’s aiming to help others.
Please share this story so others know what a purple butterfly next to a newborn means!
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