Two new mothers sit in the NICU and with their babies. One exhausted mother stands over her twins and tries her hardest to calm them while the other mother sits in a rocking chair next to her daughter’s crib and stares at her sleeping baby lovingly. The mother with twins turns to the other mother and says, “You’re so lucky you haven’t got twins … “
It sounds like an innocent statement. But it broke the other mother's heart. What the mother with twins didn’t know was that Milli Smith did once have twins. But unfortunately one of her twin baby daughters did not not survive longer than three hours after birth.
When Milli and her partner Lewis Cann discovered that they were expecting twins, they were over the moon, but they were also 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.”
Unfortunately, it was good that she prepared for the worst. At only 12 weeks, the couple was told that one of the identical twins, the baby girl that they named Skye, would not live past birth. Skye has a condition called anencephaly in which part of the brain does not develop correctly.
The couple decided to continue on with their pregnancy. They wanted to give their other daughter, Callie, a “fighting chance." While they were lucky to still have one healthy daughter, Smith says that the entire pregnancy was wrought with emotion.
“We were both devastated,” she explained. “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 decided that they would donate Skye’s organs after she passed away. Unfortunately because Smith went into labor at 30 weeks, they missed the 36-week requirement for the organ donation. Smith went into labor and had an emergency C-section.
While in labor, Smith did her best to prepare herself for what she had been told about having a baby with anencephaly. But little Skyke was a fighter and wasn’t about to let some textbook tell her how long she would survive.
“We were told from the beginning that Skye would survive minutes and would not move or make a noise,” Smith said.
“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.”
The twins were delivered at Kingston Hospital in the United Kingdom. In the hospital, there is a special room called The Daisy Room where the family can stay with the baby until they pass.
“Lewis and I laid and cuddled Skye for the three hours and for that time everything was perfect,” Smith said. “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.”
Two new mothers sit in a room and with their babies. One mother rocks her twins back and forth while the other mother sits in a rocking chair next to her daughter’s crib. The mother with twins turns to the other mother and says, “You’re so lucky you haven’t got twins … “
It was in this moment that Smith vowed to something for families like hers who have to go through such a tragic event. See, families who have a baby pass away are given a private room at birth but then Callie was in the NICU afterwards with all the other babies and parents who didn’t know their story.
Smith knew that their had to be a way to honor a lost baby and help other families become aware of the situation in a gentle and respectful way.
“None of the other parents knew what had happened or anything about Skye,” Smith explained. “The comment was completely innocent and more out of humor. They weren’t to know that I did have two 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.”
Because of this experience, Smith started campaigning and fundraising for hospitals to place purple butterfly stickers in the NICU that would help identify a baby that was part of a multiple loss.
And while this idea seems simple, Smith believes that in addition to helping other families and visitors in the NICU, the stickers can also help alert staff in the hospital as well.
Jessica Watson, a mother of two surviving triplets explained in her blog, “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.”
These stickers would help avoid all of this. What an amazing idea from a truly brave and amazing mother.
If you would like to make a difference you can donate to Skye’s charity for bereaved families by going here.