Butterfly Kisses Alliance Establishes New Care Protocols at St. Louis Hospital

Families in St. Louis who lose a baby before, during, or shortly after birth are receiving structured support from a new local organization. The Butterfly Kisses Alliance, a nonprofit established in 2023, provides resources to individuals affected by perinatal loss.

The group was founded by four labor and delivery nurses at Progress West Hospital. These nurses identified a gap in medical practice where no unified standard of care existed for families experiencing the unexpected death of an infant. The organization has since implemented its own protocols at the hospital, covering interactions from office staff to ultrasound technicians.

Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey serve as the founders. All four work in the same department and cited the emotional strain of caring for grieving mothers as the primary motivation for the project. Hollingshead noted that while most medical diagnoses have a defined standard of care, perinatal loss did not. "We grieve with these families because we are there with them through the worst day of their life," Hollingshead said.

The alliance creates comfort kits containing books, cards, and self-care items. These packages are mailed to families around the world. The kits are designed to provide tangible support and help families process their loss.

Kelsey and Greg Fussner experienced the organization’s support in 2023. Kelsey Fussner became pregnant in July 2022 after a miscarriage in 2021. Her doctors expected a delivery by 38 weeks, but scheduled a C-section for 39 weeks and one day. At a final appointment on day 38 and three days, an ultrasound technician indicated no heartbeat.

Fussner waited eight hours for surgery to deliver her daughter, Nora. During her stay, the nursing staff removed baby items from her room and closed doors to other patients to reduce noise. Before she left, the nurses provided a weighted stuffed elephant matching Nora’s weight of eight pounds and 13 ounces. They also packed a kit with Nora’s hospital blanket, footprints, a necklace, a homemade quilt, and photos.

"They took lots of pictures, which I hold so dear to me because it’s the only memory I have of her," Fussner said. The couple continued to grieve in the months following the loss.

Kelsey Fussner became pregnant again shortly after the loss of Nora. Under the care of a different physician, her next delivery was scheduled for April 10, 2024. This date coincided with the original due date for Nora. She gave birth to Abigail on that day.

The alliance continues to provide online resources for families who cannot access in-person support. These materials include advice on physical changes after loss for mothers, ways to honor a child for fathers, and guidance for siblings, grandparents, and friends. The organization aims to ensure that care for perinatal loss is consistent and accessible.