St. Louis nurses create new protocols for infant loss care
Four labor and delivery nurses established the Butterfly Kisses Alliance to address the lack of standardized support for families after a baby's death.
By Naomi Tesfaye ·
Families in St. Louis who lose a baby now have access to a structured support system that was not previously standard in medical facilities. The Butterfly Kisses Alliance provides specific resources and comfort items to parents dealing with the death of a child before, during, or shortly after birth.
Four labor and delivery nurses at Progress West Hospital founded the nonprofit in 2023. Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey observed the emotional strain on their colleagues and the families they served. They identified a gap in professional guidelines for this specific type of grief.
Hollingshead noted that most medical diagnoses come with a defined standard of care. This standard outlines the expected level of skill and support for patients and staff. However, she said no similar standard existed for families who unexpectedly lost a baby. She stated that these families need a consistent amount of care across the country.
The group developed a new protocol for the hospital. This includes specific guidance on how office staff interacts with families. It also covers procedures for ultrasound technicians and other support staff. The alliance mails comfort kits to families worldwide. These kits contain books, cards, and self-care items.
Kelsey Fussner experienced these changes firsthand in 2023. She was pregnant in July 2022 after a previous miscarriage in 2021. Her doctor scheduled a C-section for 39 weeks and one day. At a final appointment on 38 weeks and three days, an ultrasound technician showed the doctor no heartbeat.
Fussner waited eight hours for surgery to deliver her baby, Nora. She described the experience as agonizing. She wanted to see her daughter but struggled with the reality of not taking her home. The nursing staff at the hospital was the same team that founded the alliance.
The nurses removed baby items from Fussner's hospital room. They closed doors of other patient rooms when she walked the halls to give her privacy. They presented her with a weighted stuffed elephant. The toy was filled to match the exact weight of Nora, which was eight pounds and 13 ounces.
The staff packed a comfort kit containing memories of Nora. This included her hospital blanket, footprints, a necklace, a homemade quilt, and photographs of her in the outfit intended for discharge. Fussner said she holds these pictures dear because they are her only visual memory of her daughter.
A few months after Nora's death, Fussner discovered she was pregnant again. She described the news as fast and terrifying. She felt conflicted about celebrating while also grieving. Under the care of a different doctor, she was scheduled to deliver at 37 weeks via C-section.
The delivery date fell on April 10, the same month and day Nora was originally due. Fussner said she felt this timing was meant to be. She viewed the pregnancy as a sign that Nora was with them in a different way. On April 10, 2024, Fussner gave birth to Abigail.
The Butterfly Kisses Alliance continues to offer online resources for families who cannot receive in-person support. These materials address physical changes after pregnancy loss. They also provide guidance for fathers, siblings, grandparents, and friends who want to help loved ones cope.
