When Millie Smith and Lewis Cann learned they would soon become parents, they were ecstatic. Given the abundance of twins in their family, Millie’s instinct told her that she was actually carrying two babies, and her mother’s intuition was right.
She was indeed expecting twins, as the ultrasound revealed, but the doctors knew from the start that one of the babies didn’t have much chance of surviving.
They were informed that one of their daughters, born at thirty weeks pregnant, had anencephaly, a fatal disorder characterized by improper development of the fetal nervous system, or the brain and spinal cord.
They were also informed that their happy little one had only a few minutes or hours to live.
Her parents wanted to give her a name before they could bid each other farewell, knowing this. The name Skye was their choice.
“We knew that Skye needed to have a name before she was born,” Millie said. “Knowing she would only survive for seconds or minutes, I wanted her to be named during that time.”
The meaning behind “Skye,” she explained, symbolized “somewhere we knew she would always be, that we could look up at the sky and remember our baby.”
We were cuddling Skye when she passed away. This was the worst moment in our lives. I have never ever felt heartbreak like that before. But I am proud that she fought for so long to spend time with us.”
Skye only lived for three hours, time her parents spent admiring her beauty and enjoying her presence into their lives.
Following her passing, the couple were provided with a “bereavement midwife” and a “Daisy Room,” a space where parents can be with their infant before and after death, to help them cope with the loss.
However, once the girl was gone, no one talked about her any more. Millie felt like her baby never even existed, and that made her mad.
“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,” the grieving mother recalled.
As her other baby, Callie, was still at NICU, another mother who had just had twins on her own told Millie how lucky she was for not having twins, not knowing of Millie’s loss.
“None of the other parents knew what had happened or anything about Skye. The comment was completely innocent and more out of humor…They weren’t to know that I did at one point have two.” Millie continued, “But the comment nearly broke me. I ran out [of] the room in tears and they had no idea why. I didn’t have the heart to tell them what had happened. A simple sticker would have avoided that entire situation.”
This is when Millie came up with the idea of putting a sticker on the incubator indicating the loss of one or more babies in a set of multiples.
“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,” she explained.
Today, her initiative has grown into a foundation, The Skye High Foundation, that supports the purple butterfly initiative. So far, it helped spread the idea to hospitals in many different nations.
The purple butterfly merchandise includes a variety of gifts and accessories.
“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,” Millie said.
Today, her other girl, Callie is seven years old.
