Nurses Create New Care Standard

Four labor and delivery nurses at Progress West Hospital in St. Louis established a specific protocol for families who lose an infant.

The group founded the nonprofit Butterfly Kisses Alliance in 2023 to address a gap in medical support for patients experiencing loss before, during, or shortly after birth. Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey identified that while most medical conditions have defined standards of care, no such framework existed for unexpected infant death. Hollingshead stated that families need a consistent level of care that applies across the country.

The nurses implemented the new standard at their hospital, changing how office staff speak to patients and how ultrasound technicians interact with families. Beyond clinical procedures, the organization creates comfort kits containing books, cards, and self-care items. These kits are mailed to families in various locations to provide ongoing support after the initial hospital stay.

Kelsey and Greg Fussner experienced the new protocol in 2023 after losing their daughter, Nora. Kelsey Fussner had suffered a miscarriage in 2021 and became pregnant again in July 2022. Her doctor initially expected a delivery at 38 weeks but later scheduled a C-section for 39 weeks and one day. At her final appointment at 38 weeks and three days, the ultrasound technician indicated the absence of a heartbeat to the doctor. The doctor then informed the couple that their daughter had no heartbeat.

Fussner described the eight-hour wait for surgery as agonizing because she had eaten breakfast. She wanted to see her daughter but struggled with the reality that she would not take her home. The nursing staff at Progress West Hospital, who were the founders of the Alliance, immediately removed baby items from her hospital room. They also closed doors to other patient rooms when Fussner walked the halls to limit visual reminders of the nursery.

Before Fussner left the hospital without her baby, the nurses provided her with a weighted stuffed elephant. The elephant was stuffed to match the exact weight of Nora, which was eight pounds and 13 ounces. The staff also packed a kit containing memories of Nora, including her hospital blanket, footprints, a necklace, a homemade quilt, and photographs of her in the outfit intended for discharge. Fussner noted that the photographs are her primary memory of her daughter.

Months after Nora's death, Kelsey Fussner learned she was pregnant again. She described the news as terrifying and confusing because she wanted to celebrate but felt guilty doing so. Under a different doctor's care, she was scheduled for a C-section at 37 weeks. The scheduled date fell on April 10, the same month and day Nora was originally due. The couple declined to change the date.

Kelsey gave birth to Abigail on April 10, 2024. She described the timing as a way for Nora to remain part of their lives and Abigail's story. The Butterfly Kisses Alliance continues to provide online resources for families dealing with pregnancy loss. These materials include advice for mothers on physical changes, guidance for fathers on honoring their child, and support for siblings, grandparents, and friends.

The organization allows families to access these resources even when in-person support is unavailable. The Alliance aims to maintain the standard of care established at Progress West Hospital by sharing its materials with a wider audience.