When Millie Smith found out that she and her partner Lewis Cann were pregnant with twins, she had mixed emotions.
She explains to the Babble that her family had a history of twins, but only one baby ever survived after birth:
"I was almost prepared for the worst.”
Twelve weeks into her pregnancy, she and Cann got the news they'd dreaded since the beginning: one of the twins, Skye, suffered from anencephaly and would likely only live a few hours after being born.
“We were both devastated. Knowing I had to carry both babies full term then say goodbye shortly after was very tough. Dealing with it and preparing for it was hard. But the more we talked about it the more ready we were."
After she was born, Smith and Cann were able to hold their little girl for three precious hours, before taking Skye to meet her identical twin sister Callie.
Smith explains to Independent Journal Review that the time with Skye was the “best three hours of her life”:
“I just wish Callie could have been with us too, but she was in intensive care so we couldn't have us four together. Lewis and I cuddled with Skye for those three hours and talked to her about our family, how we wished she could have grown up with her sister and to enjoy her life, told her how much we loved her. I told her I was sorry that I hadn't created her properly. I felt like it was my fault. I knew it wasn't, but I always felt guilty.”
We told her that she would never be forgotten."
Skye passed away moments after meeting her twin sister.
The family was dealing with their grief in the NICU at Kingston Hospital in the U.K., when a harmless comment totally rocked Smith's world. A parent of twins who were crying said to her:
“You are so lucky you just have one.”
It was in that moment that Smith completely broke down, thinking to herself how she was actually a parent of two:
"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.”
In light of what happened to her, Smith created a campaign to support bereaved families in their difficult time. She came up with the idea to place purple butterfly stickers on babies' hospital cots to signify they were part of a “multiple loss”:
She explains that purple is not only her favorite color, but it is also suitable for both boys and girls.
In nearly three months, she says the campaign is going “amazingly well”:
“Since the post, there have been thousands of shares and comments and we have raised over $4,000 for our charity. I have lots of other ideas that I would like to implement, but I need funding to make this happen. I have been contacted by hundreds of hospitals in the UK, USA, New Zealand, Australia, Belgium, Netherlands and more.”
Since creating the Skye High Foundation, Smith realized stickers weren't a “viable” option and has since changed the idea to purple butterfly cards instead:
"I have been sending the documents to the hospitals for them to print and laminate. This means the hospitals are self sufficient and do not rely on me to order them. It is also more cost efficient, which we all know is a huge driving factor for every hospital. The butterflies are now cheap and easy to produce which hopefully will allow every hospital in the world to do it!
The cards also allows families to take the butterfly home. Most people have short, if any, memories of their babies and anything we can give them to remember will help. Peeling a sticker off a cot meant it was ruined, whereas a laminated card lasts."
Many hospitals in the U.S. already implement a similar system to help grieving families cope with their loss.
Heather Lodge, Senior Media Relations Coordinator at Barnes-Jewish Hospital in St. Louis, tells Independent Journal Review they have a placard that nurses place outside a mother's door to let people know she lost a baby:
“Nurses and staff in the labor and delivery unit will place a 'butterfly' sign on the doors of patients rooms if that patient has suffered a loss so that staff who enter the room are aware.”
Millie Smith hopes that Skye's legacy will eventually spread across the world, helping all families grieving the loss of a child. Her long-term goal includes offering support to bereaved families in the U.K., ensuring that each hospital has a bereavement midwife and counselor.
Her best advice for families is to simply talk about their loss:
“Talk about your feelings, your fears and don't hide your thoughts — the more you talk about it, the better you cope. I'm not saying it will make it easier, or take away the pain, but it does help.”
She explains that life has been quite busy since Callie and Skye were born, and juggling her foundation plus a newborn has been challenging, but completely “worthwhile.”