How would it feel to know that you’re carrying two lovely, innocent babies and that just one of them will not survive for more than a few hours after you give birth to the twins?
Millie Smith knows only too well what the feeling is like. Not only that, she knows how it feels to hold her newborn daughter, knowing that she would be snatched away from her only hours later; she knows how time flies when she only has three precious hours to love her daughter.
The young couple from Surrey, England, Millie Smith and her husband, Lewis Cann, were excited, and not so surprised when they discovered during Smith’s nine-week check-up that she was carrying twins.
“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.”
Twelve weeks into the pregnancy, the couple’s premonition was confirmed. They learned one of the twin daughters, whom they had named Skye, would not survive for more than hours past birth due to a brain condition is known as anencephaly—where the skull does not properly form, leaving the brain exposed.
There was no chance of her survival: “My baby was only expected to live a few seconds,” Smith learned.
Callie—Skye’s twin—would not have a guaranteed chance at survival either, but the couple braved through the harrowing circumstances determined to give their babies the best chance they could.
Moderately preterm at 30 weeks of pregnancy, Millie gave birth to the twins at Kingston Hospital in the UK.
Skye cried, like a normal newborn would, despite doctors’ prediction that she would most likely be motionless and voiceless.
And instead of the few seconds that Millie feared, Skye lived for three hours, giving her parents time to love her.
Then her father, Lewis, took her, moments before she passed away, to the Neonatal Intensive Care Unit (NICU), to introduce her to Callie. And there, lying close to her surviving sister, Skye passed away.
Even after going through this, the ordeal was not yet over for Smith. Fate dealt her an unwelcome hand once more in the NICU days later.
As she was watching over Callie, another mother—a mother of twins—came up to Smith and innocently remarked that she was lucky she didn’t have twins.
The remark devastated her.
Smith had not had a chance to show her grief until that point—upon which she didn’t even have time to compose herself and ended up running out of the room in tears. Though Smith couldn’t bring herself to explain her loss to the mother, the encounter gave her an idea.
There should be a way to let everyone know that the infant in the cot is a sibling of one or more babies from multiple births who did not survive.
It could be something simple to honor the memory of the baby or babies who died, at the same time also letting others know about the loss. It could save lots of families from having to go through such painful and embarrassing situations like she and the other mother had.
These losses are more common than one might think. In cases of multiple births—twins, triplets, or even more—the chances of the babies being born prematurely increases along with the number of babies, putting them at greater health risk. Thus, death among these infants, during or shortly after birth, is higher than with single births as well.
“The shocked parents are torn between joy at the birth of their child and grief at the loss of the other baby, or babies,” according to Dr. Nicholas Embleton, a neonatal pediatric consultant.
Smith chose a simple, butterfly-shaped sticker in purple.
The butterfly shape to symbolize the babies that flew away, and purple as a color that suits both boys and girls.
She started a crowdfunding campaign to fund the production of purple butterfly stickers, to be placed on cribs and cots in NICUs to help identify a baby who lost a sibling.
The response has been overwhelming, more than a hundred hospitals have taken to implementing the idea, and many families have already been saved from the pain of having to re-live their losses.
Now, the signs have become familiar in hospitals across the UK: “When visiting this Neonatal unit as either a partner, relative or friend please be aware of the butterfly logo on each cot. This represents a baby that was part of multiple pregnancies but sadly all of the babies did not survive.”
Smith says that perhaps what she is most proud of is that this movement has gotten people talking about something they once felt was too painful to talk.
“People don’t talk about a loss of a baby—they feel awkward,” she told BBC. “Even some nurses didn’t know what to say.”
“”I want to support families, the butterfly idea, and anything else that can make a difference.”