Millie Smith and Lewis Cann were thrilled when they discovered they were going to be parents. With twins running in the family, Millie had a feeling that she was carrying two babies, and her intuition turned out to be correct. The ultrasound confirmed that she was expecting twins. However, there was heartbreaking news – one of the babies had a rare and fatal condition called anencephaly, which affects the development of the brain and spinal cord. They were told that their precious daughter would have only a few moments to live.

In those precious minutes before saying goodbye, Millie and Lewis wanted to give their daughter a name. They chose Skye, a name that symbolized a place where their baby would always be – when they looked up at the sky, they would remember their little girl.

The pain of losing their daughter was unimaginable. Millie recalled, “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 lived for three hours, during which her parents cherished her beauty and presence in their lives.

After Skye’s passing, Millie and Lewis received support from a “bereavement midwife” and were given access to the Daisy Room, a space where parents can be with their infant before and after death. Despite the support, Millie felt that nobody talked about her baby anymore. It made her feel like Skye never existed, and that angered her.

Millie shared her experience, saying, “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 absence of acknowledgement and understanding made her pain even more profound.

In one instance, a mother who had just had her own set of twins unknowingly made a comment about how lucky Millie was for not having twins. Millie couldn’t bring herself to explain her loss and ran out of the room in tears. That moment inspired her to create a sticker that could be placed on incubators, indicating the loss of one or more babies in a set of multiples. She chose a purple butterfly design, symbolizing the babies that flew away. This small gesture could help prevent similar painful moments for other parents.

Millie’s initiative, The Skye High Foundation, has grown into a movement that supports the purple butterfly initiative. Hospitals in many countries have embraced the idea, spreading awareness and support for families who have experienced such tremendous loss. The foundation offers a range of purple butterfly merchandise, including gifts and accessories.

“While I will never be able to stop this from happening, the more support groups we can set up and the more awareness we can raise through initiatives like the stickers, the better it will be,” Millie emphasized. Coping with the loss of a child is an incredibly challenging journey, and every little bit of support and understanding can make a difference.

Today, Millie and Lewis’s other daughter, Callie, is seven years old. Despite the pain and loss they have experienced, their love and resilience have allowed them to find joy in their lives once again.