St. Louis Nurses Create Standard of Care for Infant Loss at Progress West

Four labor and delivery nurses at Progress West Hospital in St. Louis established a new standard of care for families who lose a baby in 2023. The group, called the Butterfly Kisses Alliance, was formed to address a gap in medical support where no national guidelines previously existed for these specific cases.

Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey created the nonprofit after observing the emotional toll on their patients. Hollingshead noted that while most medical diagnoses have established standards of care, families suffering unexpected infant loss did not. She stated that these families need a consistent level of support across the country.

The Alliance has implemented these changes directly within the hospital. The new protocols cover everything from how office staff speaks to grieving families to the conduct of ultrasound technicians. The organization also mails comfort kits to families worldwide. These kits contain books, cards, and self-care items intended to aid in the grieving process.

Kelsey Fussner experienced the new standard of care in 2023. She had previously miscarried in 2021 and was pregnant again in July 2022. Her doctor had scheduled a cesarean section for 39 weeks and one day. 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 daughter, Nora. The nursing staff, who were the founders of the Alliance, removed baby items from her hospital room to reduce visual reminders of the loss. They also closed doors to other patient rooms when she walked the halls.

Before Fussner left the hospital, the nurses provided her with a weighted stuffed elephant. It was stuffed to match the exact weight of her daughter, eight pounds and 13 ounces. They also gave her a kit containing Nora's hospital blanket, footprints, a necklace, a homemade quilt, and photographs of the baby in the outfit she was scheduled to wear at home.

Fussner became pregnant again a few months later. She gave birth to Abigail on April 10, 2024, via cesarean section. This date was the same month and day Nora was originally due. The Alliance also offers online resources for mothers, fathers, siblings, and grandparents dealing with pregnancy loss.