St. Louis nurses set national standard for infant loss care

Four labor and delivery nurses at Progress West Hospital in St. Louis established a formal standard of care for families who lose a child before, during, or shortly after birth. The nonprofit, Butterfly Kisses Alliance, was founded in 2023 by Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey.

Hollingshead stated that while medical professionals follow established standards for most diagnoses, no such benchmark previously existed for unexpected infant loss. She noted that families require a consistent level of support that should be uniform across the country. The women developed protocols that dictate how office staff, ultrasound technicians, and other healthcare providers interact with grieving families.

Kelsey Fussner and her husband Greg experienced this new approach in 2023 after the death of their daughter, Nora. Fussner had suffered a miscarriage in 2021 before becoming pregnant in July 2022. Her physician initially predicted a delivery by 38 weeks but later scheduled a C-section for 39 weeks and one day.

At her final appointment at 38 weeks and three days, an ultrasound revealed that Nora had no heartbeat. Fussner waited eight hours for surgery to deliver her daughter. She described the waiting period as agonizing, torn between the desire to see her child and the devastation of not being able to take her home.

The nursing staff at the hospital recognized Fussner as a patient and implemented specific measures to provide comfort. They removed baby items from her room and closed doors to other patients to offer privacy. After Fussner left the hospital, the nurses gave her a weighted stuffed elephant that matched Nora’s birth weight of eight pounds and 13 ounces.

The alliance also provided a comfort kit containing a hospital blanket, footprints, a necklace, a homemade quilt, and photographs of Nora in her intended going-home outfit. Fussner said the pictures remain her primary memory of her daughter. The organization continues to mail these kits to families worldwide and provides online resources for mothers, fathers, siblings, and grandparents.

Fussner became pregnant again shortly after Nora’s death. She delivered her daughter Abigail via C-section on April 10, 2024, which was the same month and day Nora was originally due. Fussner chose to keep the appointment date, stating she felt it was meant to be. The Butterfly Kisses Alliance now offers ongoing support materials to help families navigate the physical and emotional changes following pregnancy loss.