St. Louis Nurses Form Alliance to Standardize Care After Infant Loss

Four nurses in St. Louis are working to change how hospitals respond when a family loses a baby.

The Butterfly Kisses Alliance was founded in 2023 by Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey. All four women work in labor and delivery at Progress West Hospital. They started the nonprofit because they felt there was no clear medical standard for caring for parents after an unexpected infant death.

Hollingshead noted that most medical diagnoses have established standards of care, but loss of a baby did not. She argued that families should receive a consistent level of support across the country. The alliance has implemented a new protocol at their hospital that covers everything from how office staff speaks to families to the actions of ultrasound technicians.

The group also creates physical comfort kits for grieving families. These packages include books, cards, and self-care items. The kits are mailed to families around the world, extending support beyond the immediate hospital stay.

Kelsey Fussner experienced this new standard of care in 2023. She had suffered a miscarriage in 2021 and was pregnant again in July 2022. Her doctor had told her she would likely deliver 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 girl, Nora. During that time, her nursing staff removed baby items from her room and closed doors to other patients when she walked the halls. After delivery, the nurses gave her a weighted stuffed elephant. It was stuffed to match Nora's exact weight of eight pounds and 13 ounces.

The nurses also packed a memory kit for Fussner. It included Nora's hospital blanket, footprints, a necklace, a homemade quilt, and photos of the baby in the outfit she was supposed to wear for discharge. Fussner said the photos were her only visual memory of her daughter.

A few months after losing Nora, Fussner discovered she was pregnant again. She was scheduled for a C-section at 37 weeks with a different doctor. The date fell on April 10, 2024, which was the same month and day Nora had been due.

Fussner declined to move the date. She gave birth to her daughter Abigail on April 10, 2024. She described the timing as Nora's way of staying connected to the family. The alliance continues to offer online resources for parents, siblings, and grandparents dealing with pregnancy loss.