The exasperated mother trying to soothe her twins turned to the other mother in the room, the one who was sitting in her rocking chair next to her daughter. With a slight shake of her head, the mother looked at the sole baby sleeping in her crib and said, “You’re so lucky you haven’t got twins … “
It was a seemingly innocent statement. But it was one that broke Milli Smith’s heart. Because she was the mother of twins — but only one of her twin baby daughters had survived longer than three hours after birth.
When Smith and her partner Lewis Cann discovered that they were expecting twins during her nine-week check-up, they were ecstatic but also very cautious. “We had a couple of weeks of excitement,” Smith explained. “Twins run in my family. However, so far, there has not been a set of twins where both have survived. So I was almost prepared for the worst.”
And unfortunately, her premonition was correct.
At 12 weeks, the couple learned that one of the identical twin daughters, the baby girl they had named Skye, would not live past birth due to a condition called anencephaly. With anencephaly, part of the brain does not develop normally. Unfortunately, there is no treatment for the condition and babies born with anencephaly do not live longer than a few hours or days after birth.
Smith and Cann made the difficult decision to continue with their pregnancy in order to give their other daughter, Callie, a “fighting chance,” but Smith says the entire pregnancy was wrought with emotion.
“We were both devastated,” she explains. “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. I spoke about Callie and Skye on a daily basis at work and ensured that no one felt awkward talking about my pregnancy. I got to enjoy my pregnancy and got to look forward to meeting them.”
The couple had also discussed organ donation and prepared to donate Skye’s organs after she passed. But sadly, Smith went into labor at 30 weeks, missing the 36-week requirement for organ donation.
When Smith went into labor and then had an emergency C-section, she prepared herself for what she had been told to expect from having a baby with anencephaly, but little Skye wasn’t about to let a thing like statistics stand in her way of showing off a little to her mom.
“We were told from the beginning that Skye would survive minutes and would not move or make a noise,” Smith says. “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.”
At Kingston Hospital in the United Kingdom where the twins were delivered, Smith explains that families who are anticipating a loss are given a special room called the Daisy Room where the family is able to stay with the baby until the end.
“Lewis and I laid and cuddled Skye for the three hours and for that time everything was perfect,” Smith says. “Lewis took Skye to see Callie (who was in the intensive care unit) and put them together in the incubator together just before she passed away. I wasn’t able to go as I’d had an emergency C-section and was bed-bound. This is the one moment I wish I had seen.”
It wasn’t until later, after the grieving family was trying to recover while also caring for their surviving daughter, that a simple comment from a stranger completely broke Smith’s heart. And in that moment, she vowed to do something to help other families like hers.
While many families who have a baby pass away are given a private room at the hospital, because Callie was in the NICU, Smith and Cann were there with her and among a lot of other parents who simply did not know their story. It was then that Smith realized it would be helpful to have a simple way to honor a lost baby and help the other families know of the situation in a gentle and respectful way.
“None of the other parents knew what had happened or anything about Skye,” Smith explains. “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.”
So Smith started campaigning and fundraising for the placement of simple purple butterfly stickers that would help identify when a baby is part of a multiple loss.
Smith has been hard at work raising awareness and funds for what she hopes will eventually become a charity in Skye’s honor. She is even planning a sky-diving event as one of the fundraisers.
And although the premise of stickers may seem simple, Smith believes that in addition to helping other families in the NICU setting, visitors, and volunteers being aware of a multiple loss, the stickers can help alert staff in the hospital as well — which is important in a setting where so many medical professionals come and go quickly.
Jessica Watson, a mother of two surviving triplets who blogs at Four Plus An Angel, explains that the butterfly stickers would have been very helpful for her. “When your baby is in the NICU so many medical professionals come and go and it’s a heart-wrenching process to have to explain that they lost a sibling over and over again,” she says.
Smith believes that the stickers are an important way to make a difference to grieving families, but she notes that they also hope to raise money for additional bereavement resources such as support groups, counseling, more Daisy Rooms, and even additional staff like the bereavement midwife, Jo Bull, who helps guide families through the loss of a baby at birth.
“She has been our absolute rock,” Smith says gratefully. “When I went into labour, she left her house at 1 AM and came straight to the hospital just to be there to support us through the labour, birth, and death. She is incredible and every hospital needs someone like her. She helped me organise the funeral and everything.”
“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,” Smith says. “It’s the hardest thing anyone has to deal with.”
These days, Callie is back home with her parents and soaking up all of the snuggles she can with her family and her sister in the sky. “Callie came home on Sunday and we are enjoying every minute,” says Smith. “She is so tiny and precious — she’s used to being in an incubator and she is loving being cuddled a lot.”
Learn more about Skye’s charity for bereaved families here.