February 21, 2019
Purple butterflies often adorn the cribs in the NICU. However, it's more than just a decoration.
According to the Skye High Foundation, the purple butterfly logo represents a baby who was part of a multi pregnancy where not all the babies survived.
The logo is a way for parents to make others aware. The initiative was created by Millie Smith, whose daughter Skye only lived three hours after birth.
Smith fell pregnant in 2015 and had a "gut feeling" that she was expecting twins. Her doctor confirmed her suspicions but had bad news as well.
One of the babies had anencephaly – a neural tube condition that develops when the upper part of the neural tube does not close completely and the baby's brain cannot form naturally.
Not only are these pregnancies high-risk, but the parents also need to prepare themselves for losing one of the babies after birth.
Knowing that they would only have a few minutes or hours with their baby, Smith and her partner decided on Skye's name before she was born. Smith explains:
“Knowing she would only survive for seconds or minutes, I wanted her to be named during that time. Skye was somewhere we knew she would always be, that we could look up at the sky and remember our baby.”
They spent three hours with their beautiful Skye before she passed away, and Smith said it was the "worst moment of their lives."
A few weeks after the birth, Smith was in the NICU with Skye's sister who survived, Callie, when an overwhelmed mom made a callous comment.
The exhausted mom – without realizing that Smith had lost one of her babies – said Smith was "so lucky" not to have twins.
Smith had been strong up until that point but the comment broke her. She knew the overwhelmed mother didn't know any better. Nevertheless, she felt she needed to do something about it.
She was too heartbroken to explain to the mother what they had gone through with Skye's death. That's when Smith came up with the idea to design the butterfly logo.
“I chose butterflies, as I felt it was fitting to remember the babies that flew away, the color purple because it is suitable for both boys or girls.”
The idea soon spread to other NICU's and hospital wards around the country, as a reminder that the baby in the crib was one of a set of multiples, but that their sibling passed away.
According to Genetics Home Reference, anencephaly is one of the most common types of neural tube defects. Only 1 in 1,000 pregnancies are affecting, but most of those pregnancies will end in miscarriage.
Only a small percentage of babies die in utero. Approximately 75% survive birth but pass away within hours. There is no known cure or treatment for anencephaly.