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What NICU Parents Want You to Know About This Purple Butterfly

Photograph by Skye High Foundation

Over the last two years, purple butterfly stickers, cards and blankets have appeared on cribs and incubators in hospitals all over the world, letting visitors, staff and other parents know that a Neonatal Intensive Care Unit (NICU) family is grieving.

"This represents a baby that was part of a multiple pregnancy, but sadly not all the babies survived and parents have chosen that they wish to make others aware," a poster usually reads nearby.

The idea started with U.K. parents Millie Smith and Lewis Cann, who lost one of their twin daughters, Skye, on April 30, 2016. Skye had anencephaly, which meant a major portion of her brain and skull was missing, and died three hours after her birth.

While grieving for their daughter, the parents were also caring for the surviving twin, Callie, who was recovering in the NICU for seven weeks. As time passed, nurses in the NICU stopped asking about Skye, or a new caregiver would come in unaware of the family's situation, leaving Smith and Cann to explain Skye's story and relive that pain over and over again.

The comment that hit the most was when a NICU mom of multiples told Smith, "You are so lucky you don't have twins."

Ouch. It was a hit where it hurt most.

"Up until this point, I hadn't cried in front of any of these parents," Smith told "Today." "But that was it. I ran out of the room in tears. The comment absolutely broke me. I didn't have the guts to go back in and tell her our story."

This experience inspired Smith to help other families that are going through something similar. She created the Skye High Foundation to get the purple butterfly symbol implemented in hospitals and help parents cope with their loss. The simple yet meaningful symbol would both honor their angel babies and explain the family's story for them without parents having to go through a painful conversation.

The foundation has also created some purple butterfly blankets to comfort families and provide a tangible reminder of the babies they've lost.

Photograph by Skye High Foundation

"We have had a fantastic response from mothers, fathers, grandparents and staff, etc. They have all explained to us how it has taken the stress away from them," the parents wrote on their nomination page for the Butterfly awards, which is in honor of those who have shown courage or helped support those going through baby loss.

This year, the Skye High Foundation announced on Facebook that they hope to register as a charity to introduce butterfly cards and multilingual posters into more hospitals and to officially start the production of their butterfly blankets.

The family also welcomed a rainbow baby, Luca, who turned 1 this year.

Photograph by Facebook
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