St. Louis nurses create Butterfly Kisses Alliance to support families after infant loss

Four labor and delivery nurses at Progress West Hospital in St. Louis, Missouri, started a new nonprofit in 2023 to help families cope after the death of a baby. The group, called the Butterfly Kisses Alliance, focuses on parents who lose children before, during, or shortly after birth.

Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey are the founders. They work together in the same hospital unit. They said the emotional weight of caring for grieving mothers drove them to create a specific support system. Hollingshead noted that nurses often grieve alongside the families because they are present during the hardest moments of their lives.

The team identified a gap in medical protocols. Hollingshead explained that most medical diagnoses have a clear standard of care. However, she said there was no established standard for the specific care needed when a family experiences an unexpected loss. The goal was to create a consistent level of support that could be applied across the country.

The alliance implemented a new standard of care at Progress West Hospital. This change affects how office staff communicate with families and how ultrasound technicians provide information. The nurses also create comfort kits that they mail to families around the world. These kits contain books, cards, and self-care items.

Kelsey Fussner and her husband Greg were one of the first families to receive this support. In 2023, Kelsey suffered a miscarriage. She found out she was pregnant again in July 2022. Her doctor told her she would likely deliver by 38 weeks. As that deadline approached, the schedule changed to a C-section at 39 weeks and one day.

At a final appointment on the 38th week and three days, the ultrasound technician and doctor delivered the news that there was no heartbeat. Kelsey had eaten breakfast before the appointment. She waited eight hours for surgery to deliver her daughter, Nora. She described the experience as agonizing because she wanted to see her baby but also faced the reality of not taking her home.

The nursing staff at her bedside was the same group of women who founded the alliance. They immediately adjusted the environment for Kelsey. They removed baby items from her room and closed doors to other patient rooms when she walked through the halls. After the delivery, they gave her a weighted stuffed elephant. The toy was stuffed to match Nora’s exact weight of 8 pounds and 13 ounces.

The staff also packed a comfort kit for Kelsey. It included Nora’s hospital blanket, footprints, a necklace, a homemade quilt, and photos of the baby in the outfit she was meant to wear home. Kelsey said the photos are her most treasured memory because they are the only visual record of her daughter.

Kelsey became pregnant again a few months later. She felt terrified and confused about how to balance celebration with grief. Her new doctor scheduled a C-section for April 10, 2024. This date fell on the same month and day that Nora was originally due. Kelsey chose to keep the date.

On April 10, 2024, Kelsey gave birth to her daughter Abigail. Kelsey said she felt the timing was meant to be, as if Nora was staying with them. The Butterfly Kisses Alliance also provides online resources for families who cannot get in-person help. These materials help mothers with physical changes after loss, fathers with ways to honor their child, and other family members who want to support the parents.