Butterfly Kisses Alliance changes the way families are supported after the loss of a child

ST. LOUIS, Mo. (Aging Untold) — Families navigating the tragic and unexpected loss of a baby are receiving an additional support system from the Butterfly Kisses Alliance.

A group of nurses in St. Louis founded the nonprofit in 2023 to offer support and resources to families and people impacted by the death of a baby, whether before, during or shortly after birth.

Kayla Hollingshead, Jennifer Koskela, Janie Mullinnax and Jeannette Hickey work together as labor and delivery nurses at Progress West Hospital. For each of them, the emotional toll of caring for mothers who had suffered a loss prompted them to create a way to help.

“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.”

Hollingshead said with most diagnoses, there is a standard of care within the medical profession, meaning there is a level of skill, knowledge and care a healthcare provider or support staff member is reasonably expected to provide given the situation.

However, she said, no real standard has ever existed for those who unexpectedly lose a baby.

“These families need to be given a standard amount of care and it should be standard across the country,” she said.

So, the women created a new standard of care that has been implemented at the hospital, ranging from how office staff speaks to families, to ultrasound technicians and beyond.

In addition to changing standards of care, the women also create comfort kits containing books, cards and self-care items that are mailed to families around the world.

Kelsey and Greg Fussner suffered an unconscionable loss of their own in 2023. After suffering a miscarriage 2021, Kelsey found out she was pregnant in July of 2022.

“It was such a relief because we made it past what everyone said,” she said. “Because we’d never made it that far before, so making it that far was really fantastic.”

From the beginning, she said her doctor told her she likely would deliver by 38 weeks. However, as the 38-week mark approached, she said her doctor told her she would be scheduled for a C-section at 39 weeks and one day.

But at Fussner’s final appointment before delivery, at 38 weeks and three days, she received unimaginable news.

“The ultrasound tech just looked at the doctor and shook her head and he [my husband] said, ‘No say it out loud, say it out loud,’ and then the doctor said there was no heartbeat,” she said.

Having eaten breakfast before her appointment, Fussner said the next eight hours were agonizing, as she waited for surgery to deliver her baby girl Nora.

“I wanted to see her, I couldn’t wait to see her and see what she looked like, but on the other side of it was completely devastating and hard to grasp that I’m not going to be able to take my baby home,” she said.

What Fussner didn’t know at the time was that her nursing staff consisted of the same women who founded Butterfly Kisses Alliance. Immediately, she said, they showed compassion by removing baby items from her hospital room and closing other patient doors when she walked the halls.

Then, forced to leave the hospital without her baby, the women offered Fussner a weighted stuffed animal, an elephant, stuffed to the exact weight of her daughter Nora, eight pounds, 13 ounces.

They also packed her a comfort kit full of memories of Nora, including her hospital blanket, footprints, a necklace, homemade quilt and pictures in the outfit she was meant to go home in.

“They took lots of pictures, which I hold so dear to me because it’s the only memory I have of her,” she said.

As the couple continued to grieve, a few months later, Kelsey got a surprise - she was pregnant.

“It was fast, and of course, you’re absolutely terrified,” she said. “It’s confusing because you want to celebrate, but at the same time, you feel bad celebrating.”

Under the care of a different doctor, Fussner was scheduled to deliver at 37 weeks via C-section. It just so happened, she said, to fall on April 10, the same month and day Nora was due.

“They asked if we wanted to change it and I said no,” she said.

On April 10, 2024, Kelsey gave birth to Abigail.

“I felt like this was meant to be, that this was Nora’s way of saying she is with us,” Fussner said. “She will always be part of our lives and she’s a part of our story and my life and she’s going to be part of Abigail’s too, just in a different way.”

The Butterfly Kisses Alliance offers online resources for families dealing with pregnancy loss, even when in-person support is not available.

The organization provides materials for mothers seeking advice about physical changes after pregnancy loss and fathers looking to honor their child. Resources are also available for siblings, grandparents and friends wanting to help their loved ones cope.

To learn more about the Butterfly Kisses Alliance, its mission, or to donate, visit here.

Read the full story by Caroline Hecker.