Almost two years ago, Milli Smith, 25, was quietly watching over her daughter in the NICU when another woman commented on how “lucky” she was that she didn’t have twins.
That seemingly innocent remark split Smith’s already tender heart in half, because she actually was the mother of twin daughters. Her daughter, Skye, passed away three hours after birth, while her daughter Callie, now 18 months old, survived.
Sitting there in the NICU, grieving one baby lost while caring for another, Smith vowed to do something to help other families in the same situation. She started a fundraising campaign and founded the The Skye High Foundation to help hospitals utilize a purple butterfly symbol to indicate that a baby is part of a multiples loss.
This program with the tagline, “Not all twins walk side-by-side; sometimes one has wings to fly,” uses purple butterfly stickers, posters, and now blankets, to help signify that a family has lost one or more babies, alerting fellow patients and medical staff without ever having to say a word. The simple symbol helps grieving families avoid painful and uncomfortable conversations while honoring their loss in a tangible way.
Since Smith first introduced her stickers, the Skye High Foundation has been spreading its wings all over the world, changing the lives of families who have suffered the loss of a sibling. The program is now in 15 countries and the butterfly poster, which outlines the butterfly symbol and what it means, has been translated into 20 different languages.
Smith notes that the program has given families the opportunity to speak openly about their babies. What started with a simple sticker has become an avenue for hope and healing for families who previously felt as though they had to hide their pain and stories in the shadows.
Now 18 months old and big sister to 10-week-old brother Luca, Smith calls her surviving daughter Callie an “absolute inspiration.” Born at only 30 weeks and weighing barely over two pounds, Callie is now thriving. “She is such a character and extremely funny,” her mother says. “She certainly has a strong head on her and knows exactly what she does and doesn’t want, and isn’t afraid to show it!”
Along with a special “memory shelf” in Callie’s nursery that holds special keepsakes from her sister Skye, such as photos, footprints, and her ashes, Smith says she is always looking for new ways to honor Skye and keep her a part of Callie’s life on a daily basis.
When Smith’s best friend Emily Lewis, a local artisan made Callie a special butterfly blanket, she was so touched that the pair decided to share the blankets publicly. The pink or blue blankets are handmade with one or two butterflies for twin or triplet sets.
And the response to these precious blankets? “Unbelievable,” Smith says.
With the blanket so well received among fellow sibling loss families, Smith and Lewis teamed up to start donating them to families in need of comforting after losing a twin.
“Although it’s a small gesture, we hoped it would help them,” Smith explains. “If we had been given a gift in neonatal on day one to honor Skye, we would have loved that.”
One of the families that Smith was able to help was the Hurlbut family. Katie Hurlbut, 36, is a pediatric nurse practitioner and mother of Luke, 4, and twin girls, Anna, 2, and Ella Grace, who passed away at 7 weeks. Hurlbut explains that when she was pregnant with twins in 2015, she and her husband expected a long NICU stay with their daughters, but was hopeful they’d bring them both home.
Instead, their hearts were “shattered” when Ella developed MRSA sepsis and passed away at 7 weeks. Because the twin girls had been labeled as Baby A (Anna) and Baby B (Ella) through their entire hospital stay, the hospital staff members who cared for Anna after Ella’s death continued to ask, “Where is Baby B?” over and over again. For an entire month, the parents were forced to relieve Ella’s passing every time a new caregiver entered the room, and answer questions from other NICU families when they moved from a double room to a single room.
“I was still in shock from losing her, so it was indescribably painful to have to tell strangers that she had passed away,” Hurlbut explains. Weeks after their NICU stay, Hurlbut came across the purple butterfly program and Millie’s story.
“Reading their story gave me hope,” she notes. “Hope that, not only was it possible to survive a horrific loss like this, but it was also possible for something good to come out of it, too.”
Following their stay, Hurlbut spoke to a bereavement nurse from the Texas Children’s Hospital about the purple butterfly program and the hospital began using them in both the newborn center and the NICU in September 2016. Knowing how much the program would have helped release them from what Hurlbut calls the “burden” of reliving Ella’s death day after day, the family is hopeful that the butterflies will help bring other sibling loss families a measure of peace.
Since becoming part of the butterfly family, Hurlbut was also gifted with one of the program’s new butterfly blankets, which Anna sleeps with every single night. “I feel like that blanket gives Anna something tangible to remember Ella by,” she says.
Hurlbut’s mother has also joined in the butterfly movement, getting together with her sewing circle at church to make and donate purple butterfly blankets to the Texas Children’s Hospital. The blankets are donated to any survivor that is part of a loss in multiples birth. “I feel it is so important for the survivors to have something that they can hold onto that will also help them remember the sibling they lost,” Hurlbut adds.
For the Hurlbut family, a simple purple butterfly — and a fellow mother who was willing to share her loss and love — transformed their lives.
“Butterflies have become an important symbol in our family because of the purple butterfly program,” she says. “They represent great beauty that can come from immense darkness. They also represent transformation, life, and hope. I don’t know if Millie will ever fully recognize the magnitude of what she has done for parents out there like me that have experienced the loss of a twin. She has given us all hope. Hope that someone out there recognizes and knows our pain and is doing something to make it better.”
The Skye High Foundation is currently hoping to raise around $130 a month, which would allow them to donate 10-15 blankets every month to families in need. If you are interested in contributing, you can sponsor a blanket here.