Inside Crystal Hopkins' Tampa home, she gestures to the large, white curio cabinet that dominates her family's dining room. She pulls open the double doors and plucks a metallic pink canister off the glass shelf.
"So this is Everly's urn that we picked. Around the outside there's butterflies,” said Hopkins, “it's beautiful, very girl-like. The minute I saw it, I knew it was for her."
Everly died last January before her first birthday. Her urn is surrounded by photos of her, and the dresses and headbands she wore. Everly's death prompted Hopkins to help families in Florida have a dignified opportunity to say goodbye after their child dies.
Her family discovered the CuddleCot while researching end-of-life options for Everly, who was born with a heart defect. It's a device that blows cool air through tubes attached to a plastic mat. It’s like a small humidifier, said Hopkins.
A baby's body is laid on it soon after death, keeping it cool and holding off decomposition that begins within minutes. It can be placed in a straw bassinet, or place in a mother’s hospital bed, said Hopkins.
Hopkins said a CuddleCot would have come in handy. "The whole point of the CuddleCot is just that it extends the time that a family has with their child and that's the time that you can't get back,” she said. “It's priceless. So as much as we wanted it we didn't have it."
She and her husband feel blessed to have had nearly a year to spend with Everly. They took family photos with her two sons, made molds of her tiny hands and feet and completed a bucket list that included a nature hike.
In January 2016, LifePath Hospice in Tampa, which helped cared for Everly, became the first place in Florida to own a CuddleCot. Everly's name graces metal nameplates on both the cot and the box that cradles it.
"There are some families who simply can't afford a funeral or a burial and so to have the kind of kind available to them gives a little dignity and time to say goodbye which is so important," said Lynn Parker a nurse with LifePath Hospice.
According to the Centers for Disease Control and Prevention, six of every one-thousand babies die nationwide within a year of birth. Some are stillborn.
Lori Esteve of Lakeland experienced a stillbirth with her son Zachary about thirty years ago. "You know, I wanted to be able to count his fingers and count his toes and those are the things that are my really really big regrets," said Esteve.
Now, she runs the national CuddleCot Campaign, where she's helped place about 130 of the 200 CuddleCots that now reside in hospitals and birthing centers around the country. "The baby never really has to leave the room doesn't have to go to the morgue, doesn't have to go to a refrigerator, doesn't have to be packed in ice - those kinds of things."
Florida hospitals have not been receptive to having CuddleCots available, said Esteve. But every hospital in Columbus, Ohio has a CuddleCot.
Dr. Phillip Shubert is the "Medical Director of Maternal Fetal Medicine" at Mount Carmel Health. He said they didn't change policy to use the CuddleCot. It just became another option. "Meaningful grieving requires time,” he said.
And it helps more family members to meet the baby."It allows them to bring in extended family that may not be local and it may take them a day or two to get here," said Shubert.
Esteve said she's going to keep pushing hospitals to change the policies they say are working. “It might be working for the hospitals and but it's not working for the families in their healing process,” she said.
Back in Tampa, Hopkins said Everly's short life made an impact. "We just kind of know, almost immediately after she passed, her life couldn't end there. Her message, her story, her impact could not stop on that day," said Hopkins.
And in a way, her daughter is helping other families, too.