Millie Smith and Lewis Cann were overjoyed when they discovered they were going to be parents. Given that twins ran in the family, Millie had a strong intuition she was carrying two babies, which was confirmed by the ultrasound.
However, their joy was tempered by devastating news: one of the babies had a rare and fatal condition called anencephaly, which affects brain and spinal cord development. They were told their daughter would only live for a few moments after birth.
In those precious moments, Millie and Lewis decided to name their daughter Skye, symbolizing a place where she would always be remembered. The name held a promise: whenever they looked up at the sky, they would think of their little girl.
The heartbreak of losing Skye was beyond words. “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,” Millie recalled. Skye lived for three hours, during which her parents cherished every second with her.
After Skye’s passing, Millie and Lewis received support from a bereavement midwife and spent time in the Daisy Room, a special space for parents to be with their infant before and after death. Despite this support, Millie felt a profound sense of isolation as people stopped acknowledging Skye.
“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,” Millie shared. This silence made her grief even more painful.
One particularly painful moment occurred when another mother, unaware of Millie’s loss, remarked how lucky she was not to have twins. Unable to explain her loss, Millie ran out of the room in tears.
This experience inspired her to create a sticker for incubators to indicate the loss of one or more babies in a set of multiples. She chose a purple butterfly design, symbolizing the babies that had flown away. This small gesture aimed to prevent similar painful moments for other parents.
Millie’s initiative, The Skye High Foundation, has grown into a movement supporting the purple butterfly initiative. Hospitals in many countries have adopted the idea, raising awareness and providing support for families who have experienced such profound loss. The foundation also 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 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 endured, their love and resilience have allowed them to find joy in life once again.
