The Purple Butterfly Project Brings Hope, Healing and Legacy to NICU Families and Staff

For her family, it is a symbol of healing and a legacy for the child they had lost. For staff, it is a small reminder of a life they cared for just as much as the surviving twin and her family.

In May 2017, Mass General for Children (MGfC) introduced the Purple Butterfly Project to honor the lives of babies who were part of a multiple pregnancy and passed away. The stickers also serve as a reminder to hospital staff of the family’s loss. When a baby who was part of a multiple pregnancy passes away, hospital staff place a sticker of a purple butterfly on the isolette or bassinette. While MGfC has not needed to use the stickers yet, they are stocked on all post-partum floors, in the NICU and on labor and delivery floors.

Butterfly stickers honor babies who are lost in utero, stillborn or who pass away after birth. Kate Breen, RN, helped bring this life-honoring initiative to MGfC along with other staff from the NICU, the Pediatric Palliative Care Program, the Perinatal Palliative Care Program and Obstetrics and Gynecology at Massachusetts General Hospital.

“It’s a symbol of healing for the family and a reminder that we are thinking of them,” said Breen. “It’s also a reminder to staff to be mindful of our language and in how we approach families.”

It is important to find meaning after death, especially with the loss of a child. The sticker helps to create that meaning for the family and for the child, said Serguei Roumiantsev, MD, PhD, medical director of the NICU at MGfC and member of the team who helped implement the Purple Butterfly Project at the hospital.

“The child has an ongoing life after death and the butterfly is a marker for that,” said Roumiantsev. “In a small, but meaningful way, it helps families create a legacy for the baby, who is very much a part of their family even after life ends.”

The stickers will also serve as a non-intrusive reminder for staff so they can help families cope, said Roumiantsev. In the NICU, there is a particular challenge with babies who are born very premature. It arises when babies stay for weeks or months and staff can sometimes forget that the surviving baby was part of a multiple pregnancy.

“We are humans. Some staff might not remember or might not even know about the child who passed away. It’s not that we forget on purpose. It’s just that time passes,” said Roumiantsev. “This is especially true for babies who were born around the 24–25-week gestation mark and they stay in our NICU for three months or more. The butterfly helps honor that child and that family.”

The Purple Butterfly Project is a nonprofit organization started by Lewis Cann and Millie Smith from the United Kingdom, who lost a twin shortly after birth. While their surviving twin was recovering in the NICU, another mother on the floor, who’d had a particularly exhausting morning, made an innocent comment about how lucky Smith was not to have twins. The comment devastated Smith, who then decided that there should be a symbol to honor the child and remind others of the family’s situation. The butterfly is a symbol of the child who had “flown away” and the color purple is fitting for babies of all genders.