St. Louis Nurses Define New Care Standards for Infant Loss: Butterfly Kisses Alliance
Four labor and delivery nurses created a nonprofit to provide comfort kits and standardized support for families grieving the death of a baby.
By Petra Murphy ·
The absence of a unified medical protocol for families suffering the sudden death of an infant has left many to navigate their grief without a clear guide. In St. Louis, four labor and delivery nurses sought to fill that gap by establishing a specific standard of care for these moments. Their effort led to the creation of the Butterfly Kisses Alliance, a nonprofit founded in 2023 to support families who lose a baby before, during, or shortly after birth.
Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey all work as nurses at Progress West Hospital. They observed that while the medical field has established standards for most diagnoses, no similar framework existed for unexpected infant loss. Hollingshead noted that this lack of protocol meant families received inconsistent support. She stated, “These families need to be given a standard amount of care and it should be standard across the country.”
The alliance implemented these new standards directly at the hospital. The changes range from how office staff speaks with grieving parents to the procedures followed by ultrasound technicians. Beyond clinical protocols, the group creates comfort kits containing books, cards, and self-care items. These packages are mailed to families around the world to provide tangible support during the weeks following a loss.
Kelsey Fussner experienced this support firsthand in 2023. After a miscarriage in 2021, she became pregnant again in July 2022. Her doctor initially predicted delivery by 38 weeks but later scheduled a C-section for 39 weeks and one day. At her final appointment on August 3, 2022, at 38 weeks and three days, the ultrasound technician indicated the absence of a heartbeat. Fussner waited eight hours for surgery to deliver her daughter, Nora.
Fussner described the immediate aftermath as agonizing. She wanted to see Nora but also struggled with the reality of not taking the baby home. Unaware at the time, she was being cared for by the nurses who had founded the Butterfly Kisses Alliance. They removed baby items from her room and closed doors to other patients to protect her privacy as she moved through the hospital.
Before Fussner left the hospital, the nurses presented her with a weighted stuffed elephant. The toy was stuffed to match Nora’s exact weight of eight pounds and 13 ounces. They also packed a comfort kit containing Nora’s hospital blanket, footprints, a necklace, a homemade quilt, and photographs of the baby in the outfit she had been prepared to wear for discharge. Fussner said the photos were her primary memory of Nora.
Months after Nora’s death, Fussner discovered she was pregnant again. She described the experience as terrifying and confusing, balancing the need to celebrate with the fear of another loss. Under the care of a different doctor, she was scheduled to deliver her next child, Abigail, via C-section on April 10, 2024. This date coincided with the original due date for Nora.
The alliance continues to provide online resources for those who cannot access in-person support. These materials include advice for mothers on physical changes after loss, guidance for fathers on honoring their child, and tips for siblings, grandparents, and friends. The organization aims to ensure that the standard of care established in St. Louis reaches families regardless of their location.
