St. Louis nurses implement new standard of care for families who lose a baby

Butterfly Kisses Alliance, a nonprofit founded by four nurses in St. Louis, has established a new standard of care for families who experience the loss of a baby. The organization was created in 2023 to offer resources and support to individuals affected by death before, during, or shortly after birth. Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey initiated the group while working as labor and delivery nurses at Progress West Hospital.

The founders identified a gap in medical protocols for unexpected infant loss. Hollingshead noted that while most medical diagnoses have established standards of care, no consistent national standard existed for families in this specific situation. She stated that these families require a standard amount of care that should be uniform across the country. The nurses developed a protocol now implemented at Progress West Hospital, covering interactions from office staff to ultrasound technicians.

The alliance also creates comfort kits containing books, cards, and self-care items. These kits are mailed to families around the world. The organization provides online resources for families when in-person support is not available, including materials for mothers, fathers, siblings, grandparents, and friends.

Kelsey Fussner, who suffered a miscarriage in 2021, became pregnant in July 2022. Her physician advised that she would likely deliver by 38 weeks. As that deadline approached, her doctor scheduled a cesarean section for 39 weeks and one day. At her final appointment, which took place at 38 weeks and three days, an ultrasound technician indicated there was no heartbeat.

Fussner waited eight hours for surgery after eating breakfast before her appointment. She described the wait as agonizing. The nursing staff present in her room included the four women who founded the Butterfly Kisses Alliance. They removed baby items from her hospital room and closed doors to other patient areas when she walked the halls.

After surgery, the nurses provided Fussner with a weighted stuffed elephant. The toy was stuffed to match the exact weight of her daughter, Nora, who weighed eight pounds and 13 ounces. The women also packed a comfort kit for Fussner containing memories of Nora, including her hospital blanket, footprints, a necklace, a homemade quilt, and photographs of the baby in the outfit she had selected for going home.

Fussner said the photographs were the only memory she had of her daughter. Several months after losing Nora, Fussner learned she was pregnant again. She described the pregnancy as terrifying and confusing. Under the care of a different doctor, she was scheduled to deliver by cesarean section at 37 weeks on April 10. This date coincided with the month and day Nora had been due.

Fussner declined to change the appointment date. On April 10, 2024, she gave birth to her daughter, Abigail. She said she felt the timing was intentional. "I felt like this was meant to be, that this was Nora’s way of saying she is with us," Fussner said. She noted that Nora will remain part of the family's story and Abigail's life.

The Butterfly Kisses Alliance continues to provide materials for parents and extended family members seeking guidance on physical changes and emotional coping strategies following pregnancy loss.