MEMPHIS, Tenn. — Emily Long started the Helen James Foundation in honor of her daughter who was stillborn in 2018. The foundation aims to fundraise for Cuddle Cot donations to hospitals and to normalize healing for affected families.

“The day I was 38 weeks pregnant, something felt off. She wasn’t moving. She always did. So we called our doctor. We went in, they pulled up an ultrasound machine next to us. She was gone,” Long said.

Long delivered her baby Helen by C-section that night.

“They said you have a beautiful 7 lb., 7 oz. baby girl. Treated her like she was any other baby, which was amazing. The only difference was the room was dead silence. There was no crying baby,” Long said.

Traditionally, this is called “stillbirth.” But Long doesn’t say it that way.

“We had a baby and our baby died. When you use that term it almost sounds like this foreign thing,” she said. “Normalizing a little bit or a lot would really be helpful, especially for those who’ve experienced it.”

That’s what Maureen Piantedosi wants as well. Piantedosi lost her daughter Nora at 28 weeks.

“Our pregnancy was normal and fine until it wasn’t,” she said. “I thought it was something that was outdated, something that happened years ago. I had no idea how common it was.”

In fact, according to the Centers for Disease Control, about 1 in 100 pregnancies end in stillbirth, defined by an infant loss in a pregnancy longer than 20 weeks.

According to the CDC, 24,000 babies are stillborn in the U.S. each year.

Both Long and Piantedosi had extensive testing done but never got any answers for why their daughters died.

“The guilt you can carry as a mom of not getting your baby here. For me, that’s lessened as the days and weeks have gone on because I know it’s not true that it’s not my fault. I did everything I could to get her here. knowing that I feel more comfortable talking about it,” Long said.

That’s part of why Long started the Helen James Foundation.

Their mission is to build awareness and support for families, including increasing access to a key tool that helped them in the hospital right after Helen died.

“The Cuddle Cot is a piece of equipment that works as a cooling blanket that can preserve a baby’s body usually for up to five days,” Long said,

The Cuddle Cot bassinet gave her family three days to meet Helen. They traveled from all over, including her sister who lived in another country.

“It’s such an amazing thing. We’ve heard stories where couples have had five minutes with their babies after they delivered and their baby was taken away. We can’t even imagine what that would’ve been like not getting to process and accept,” Long said.

Piantedosi also knew how valuable that time could be since she said she didn’t get it.

Her hospital had a Cuddle Cot but she said the staff didn’t know about it. A friend knew it was available and suggested it, but it still got set up incorrectly.

In response, Methodist Germantown officials wouldn’t comment on Piantedosi’s case but said their staff was trained to use the equipment.

“Having the hospitals understand the impact it makes on a family, it’s a moment in time for them but it’s a lifetime for me that I will always remember not getting as much time as I could’ve,” Piantedosi said.

The Helen James Foundation has donated Cuddle Cots to nine hospitals so far.

Long admitted it can be tough to get staff to buy in and the subject may be hard for some, but they’re not giving up on their mission.

“As a parent you want your child to make a name for themselves. My daughter can’t. I have to be her advocate, get her name out there, and know her life had meaning,” Piantedosi said.

“I love when people talk about her. I love when people reference, ‘When do you think her personality would be like?’ She was a person. She is a person. She matters,” Long said.

Here’s the full statement from Methodist Le Bonheur Healthcare spokesperson Rachel Powers:

As National Infant Loss Remembrance Day approaches in October, we recognize the ongoing pain of losing a child and our prayers are with each of those families as they continue to grieve. While we cannot comment on a particular situation, in the aftermath of infant loss, Cuddle Cots can be an option for patients. Our Associates are trained to use this cooling equipment, which allows the baby to stay in their parents’ hospital room for as long as possible. We provide additional support for our grieving patients, including bonding time, memory boxes, as well as footprints and photos of their child. We also offer a monthly support group those who experienced the tragic loss of an infant.