Milli Smith was simultaneously delighted and concerned when the doctor told her she would be having twins after her 9-week checkup. It wasn’t the thought of caring for two newborns that had her worried though. Twins run in her family, but there has never been a set where both children survived.
Smith’s fear became a reality three weeks later when one of her identical twin girls, Skye, was diagnosed with anencephaly. Part of Skye’s brain would not develop normally and doctors did not expect her to survive more than a few days at most. Smith was devastated, but she wanted to give her other daughter, Callie, every chance she could.
Smith went into labor 3 weeks early and had an emergency C-section. In an interview with Babble, Smith said, “We were told from the beginning that Skye would survive minutes and would not move or make a noise. But the moment she was born, she cried. That was the most surreal moment of my life. She was crying and moving her arms and was just like a normal baby. It was thousands times better than I had expected.”
Callie was taken to NICU while Smith was taken to a special private room for mothers with newborns who are not expected to survive. Skye lived just long enough to visit her sister Callie in an incubator. Smith, bed-ridden from the C-section, wasn’t able to see the two little girls together before the end.
Smith and her surviving daughter had to remain in the hospital for a few days. While visiting her daughter in NICU, Smith was surrounded with other parents whose newborns required intensive care. While looking at her little girl, Smith was absolutely devastated by an innocent comment from a nearby stranger.
None of the other parents knew what had happened or anything about Skye. The comment was completely innocent and more out of humor. A parent of twins turned to me, when their babies were crying, and said, ‘You are so lucky you just have one.’ They weren’t to know that I did at one point have two. 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.”
After this heart-wrenching incident, Smith started the purple butterfly campaign through the Skye High Foundation, a charity that raises funds to help support parents dealing with the loss of a child. Notices placed near the neonatal units read: “When visiting this neonatal unit either as a partner, relative or friend please be aware of the butterfly logo on each cot. This represents a baby that was part of a multiple pregnancy but sadly not all the babies survived.”
Smith said about the project, “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’s surviving daughter Callie is now healthy and happily at home with her loving parents. Smith says “She is so tiny and precious — she’s used to being in an incubator and she is loving being cuddled a lot.”