St. Louis Nurses Draft New Protocol for Infant Loss Care

Four labor and delivery nurses at Progress West Hospital in St. Louis have established a formal standard of care for families experiencing the loss of a baby. The Butterfly Kisses Alliance, a nonprofit these nurses founded in 2023, now dictates how hospital staff interact with grieving parents.

Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey created the protocol after observing the emotional strain on both families and medical staff. Hollingshead noted that while most medical conditions have defined care standards, infant loss lacked a unified national approach.

"These families need to be given a standard amount of care and it should be standard across the country," Hollingshead said. The new guidelines cover everything from how administrative staff speak to patients to the specific actions of ultrasound technicians.

The organization also prepares physical comfort kits for families. These packages include books, cards, and self-care items. Kelsey Fussner, a mother who lost her daughter Nora in 2023, received such support from the alliance's founders during her stay at Progress West.

Fussner learned her baby had no heartbeat at a 38-week appointment. She waited eight hours for surgery to deliver Nora. The nursing team removed infant items from her room and closed doors to other patients to provide privacy. They also provided a weighted stuffed elephant matching Nora's birth weight of eight pounds and 13 ounces.

The kit included Nora's hospital blanket, footprints, a necklace, a homemade quilt, and photographs. Fussner said the images were her only physical memory of her daughter. "They took lots of pictures, which I hold so dear to me because it's the only memory I have of her," she said.

Fussner became pregnant again shortly after Nora's death. She gave birth to her daughter Abigail on April 10, 2024, the same date Nora was originally due. The alliance now offers online resources for parents, siblings, and grandparents, including guidance on physical changes after loss and ways for fathers to honor their children.