Helping Florida Families Say Goodbye To Babies Who Die

Mar 10, 2016

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.

“This is Everly's urn that we picked,” Hopkins said. “Around the outside there's butterflies. It’s beautiful, very girl-like. The minute I saw it, I knew it was for her."

Everly Hopkins died just before her first birthday last January, from a genetic condition called “Trisomy 18.” Her urn is surrounded in the cabinet by photos of her, and the dresses and headbands she wore.

“We love having her here with us in the house. In the center,” Hopkins said.

The baby's death prompted Hopkins to find a way to help families in Florida wanting a dignified opportunity to say goodbye after their child dies. Her family discovered something called a CuddleCot while researching end-of-life options for Everly, 

Very simply, the CuddleCot is a device that funnels cold water through tubes attached to a plastic mat.

It's small, “like a humidifier,” Hopkins said. It allows a baby's body to be laid on the mat soon after death, keeping it cool and holding off decomposition which begins within minutes.

The cooling mat often is placed in a straw bassinet that looks like a Moses basket. Or it can be placed on a hospital bed next to a Mom, Hopkins said.

Everly died at a hospital in Atlanta last year. Hopkins said a CuddleCot would have come in handy, but only a handful of them existed in the United States at that time. They wanted to bring Everly home before her cremation, so they used ice to keep her cool.

"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,” Hopkins said. “It's priceless. So as much as we wanted it (the CuddleCot), we didn't have it."

Hopkins said her 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.

But not everyone gets that time, she said. In addition to encouraging hospitals to adopt the CuddleCot, Hopkins' organization, "Everly's Angels," gives out “Everly After” memory keepsake boxes with a hand and feet mold-making kit, a card to stamp little footprints on, a remembrance bracelet, and “Forget-me-not seeds to plant,” among other trinkets.

In January of this year, 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 bright blue box that cradles it.

Lynn Parker, a nurse with LifePath, said the CuddleCot not only makes transportation home from a hospital more dignified, but it allows families to spend time with their baby they might not get otherwise.

"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,” Parker said.

According to the Centers for Disease Control and Prevention, six of every 1,000 babies die nationwide within a year of birth. Some are stillborn.

Lori Esteve of Lakeland experienced a stillbirth with her son, Zachary, about 30 years ago. She was 19, and her and her husband were in shock. Back then, she said it wasn’t socially acceptable to spend time with a baby after death, and devices like the CuddleCot didn’t exist.

"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,” Esteve said.

Now, she runs the U.S. CuddleCot Campaign Initiative, 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, and doesn’t have to be packed in ice - those kinds of things,” Esteve said.

Esteve said in her experience, Florida hospitals have not been receptive to having CuddleCots available.

But she's had better luck in Ohio, where every hospital in Columbus has a CuddleCot.

Dr. Phillip Shubert, medical director of Maternal Fetal Medicine at Mount Carmel Health in Columbus, said they didn't change policy to use the CuddleCot- it just became another option.

"Meaningful grieving requires time,” Shubert said.

It also 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,” Shubert said.

Esteve said she's going to keep pushing hospitals to change the policies they say are working. “It might be working for the hospitals, but it's not working for the families in their healing process,” Esteve said.

Esteve said countless families in her outreach group S.O.B.B.S or, “Stories of Babies Born Still,” have told her nurses and doctors did not allow them much time to spend with their babies before they were whisked away.

Back in Tampa, Hopkins said Everly's short life made an impact. She’ll live on through Everly’s Angels and the CuddleCot her name is featured on.

“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,” Hopkins said.

Hopkins said Everly helped her family live life to the fullest, and in a way, she’ll be helping other families, too.

Daylina Miller is a reporter with WUSF in Tampa. WUSF is a partner with Health News Florida, which receives support from the Corporation for Public Broadcasting.