Nurses in St. Louis create new care standards for parents losing babies

Eight pounds and 13 ounces. That is the exact weight of a stuffed elephant given to one St. Louis mother after she lost her daughter, Nora, in 2023. The stuffed animal was provided by the Butterfly Kisses Alliance, a nonprofit founded by local nurses to support families facing infant loss.

The organization was established in 2023 by four labor and delivery nurses at Progress West Hospital: Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax, and Jeannette Hickey. The group formed after observing the emotional impact these losses had on both families and their own staff. Hollingshead noted that while medical professionals follow specific standards of care for most diagnoses, no such standard exists for unexpected infant death.

"We grieve with these families because we are there with them through the worst day of their life," Hollingshead said. "We’re humans as well, we have emotions, and we got into nursing because we care and we love hard." The nurses argued that families need a consistent level of care and support across the country, regardless of where the loss occurs.

The Alliance has implemented a new standard of care at Progress West Hospital. This protocol dictates how office staff communicate with families and how ultrasound technicians provide support. Beyond hospital protocols, the group creates comfort kits containing books, cards, and self-care items. These kits are mailed to families in various locations.

Kelsey and Greg Fussner experienced the loss of their daughter Nora in 2023. Kelsey had previously suffered a miscarriage in 2021. When she became pregnant again in July 2022, her doctor indicated she would likely deliver by 38 weeks. As the due date approached, her doctor scheduled a C-section for 39 weeks and one day.

At a final appointment at 38 weeks and three days, the medical team discovered Nora had no heartbeat. Kelsey waited eight hours for surgery to deliver her daughter. After the birth, the nursing staff, who were members of the Alliance, removed baby items from her room and closed doors to other patients to protect her privacy.

Before leaving the hospital, the nurses presented Kelsey with the weighted elephant and a comfort kit. The kit included Nora’s hospital blanket, footprints, a necklace, a homemade quilt, and photos of the infant in the outfit intended for discharge. "They took lots of pictures, which I hold so dear to me because it’s the only memory I have of her," Kelsey said.

Months later, Kelsey learned she was pregnant again. She was scheduled to deliver her next child, Abigail, on April 10, 2024. This date coincided with the month and day Nora was originally due. Kelsey gave birth to Abigail on that day via C-section. "I felt like this was meant to be, that this was Nora’s way of saying she is with us," she said.

The Butterfly Kisses Alliance provides online resources for families dealing with pregnancy loss. These materials address physical changes for mothers, ways for fathers to honor their child, and guidance for siblings, grandparents, and friends. The organization serves as a resource for those seeking support when in-person help is not available.