St. Louis nurses create new care standards for families after infant loss

Four labor and delivery nurses in St. Louis established a nonprofit in 2023 to address a gap in medical support for parents who lose a child. The organization, the Butterfly Kisses Alliance, works to standardize the care these families receive during a period that often lacks clear clinical guidelines.

Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey founded the group after observing the emotional strain on both parents and staff during such losses. Hollingshead noted that while most medical diagnoses have established standards of care, no such benchmark exists for unexpected infant death. She stated that families need a consistent level of support that should apply across the country.

The alliance has implemented a new protocol at Progress West Hospital that extends beyond medical treatment. The guidelines cover how office staff communicate with families and how ultrasound technicians handle sensitive information. The organization also creates comfort kits containing books, cards, and self-care items that are mailed to families around the world.

Kelsey and Greg Fussner experienced this new standard of care in 2023. Kelsey Fussner had been pregnant since July 2022 following a miscarriage in 2021. Doctors had predicted a delivery by 38 weeks. At her final appointment at 38 weeks and three days, an ultrasound technician indicated there was no heartbeat.

Fussner waited eight hours for surgery to deliver her baby, Nora. The nursing staff, who included the alliance founders, removed baby items from her room and closed doors to other patients to provide privacy. Before she left the hospital, the nurses gave her a weighted stuffed elephant filled to match Nora’s exact weight of eight pounds and 13 ounces.

The nurses also packed a kit with memories of Nora, including her hospital blanket, footprints, a necklace, a homemade quilt, and photos of the baby in the outfit intended for discharge. Fussner described the photos as her most precious memories of the child. A few months after Nora’s death, Kelsey discovered she was pregnant again.

She scheduled her second C-section for April 10, the same date her first daughter was due. On that day in 2024, she gave birth to Abigail. The alliance continues to offer online resources for parents, siblings, grandparents, and friends navigating pregnancy loss. These materials cover physical changes after loss and ways for fathers and extended family to honor the child.

The organization’s website provides details on its mission and donation options. The nurses hope their work will serve as a model for other hospitals seeking to improve support for bereaved families.