Clara's legacy: Giving the gift of time after infant loss

For parents who have experienced infant or pregnancy loss, there never seems to be enough time. Each moment passes too quickly as parents wade through confusion, trauma, grief and disbelief.  

Stephanie Cone of Sartell hopes she's helped make that transition just a little easier. She's the mother to three children, Calen, 11, Cadie, 8, and Clara. 

In 2015, Cone lost Clara after only 64 minutes to a congenital heart defect. This year, she lent her family's story to support a grant application to purchase "CuddleCots."

She wrote a letter, describing her experiences, some of which is included in this story. 

It worked. 

St. Cloud Hospital and CentraCare Health — Monticello each received a donation from Hope Remains, an organization which support families affected by miscarriage, stillbirth and infant loss.

The CuddleCot is essentially a cooling system which can be used in a crib. It helps preserve a baby's features, delaying the natural processes that occur after death. Water runs through a blanket, keeping the baby cool. 

It allows families time to bond with their child before they are taken away, said Melissa Lahn, director of the Family Birthing Center at St. Cloud Hospital. It also allows time for the ever-important keepsake making: prints and molds of hands and feet and photos.

In previous decades, a child's remains were often whisked away as soon as they died. 

"Now, we encourage (parents) to hold, touch and take pictures," Lahn said. "I think it helps promote healing and closure, and realizing that really was a life." 

It means the wider family can get involved too, allowing more time for parents, friends, siblings and children to get to the hospital, Lahn said. 

The goal is to have a CuddleCot in every CentraCare facility. 

"It's touching knowing that it will get used, but in the same regard, it's also very sad, that somebody else is going through those emotions," Cone said.

Clara's legacy is living on in the CuddleCots, but also in Cone's life. 

"Through Clara I've been connected with several other infant loss moms," Cone said. "I think as far as advice, all I can say is, you'll get through it. It's the worst imaginable thing ever, but you'll get through it. They're your baby, regardless."

From routine to 'comfort care' in 3 months

At a routine 20-week ultrasound, doctors discovered Cone's daughter's heart wasn't developing correctly. What followed was a whirlwind of tests, appointments, consultations and planning, amid heavy emotions.

"At one point we were told by a pediatric cardiologist that our baby ... had a '50:50 chance to survive to 30 weeks in utero,'" Cone said. 

About three months after first noticing a problem, Cone received a call from a pediatric cardiothoracic surgeon in Minneapolis.

"In his opinion, Clara's heart was beyond repair. There were too many problems to overcome, and a surgery was not a viable option," Cone said. 

The plans changed from life-saving surgeries to comfort measures. 

"Since learning of Clara's heart condition ... I prayed and prayed for a miracle for her," Cone said. But her prayers changed. Now she was praying for her daughter to at least be born alive.  

"That I would get to meet her and see her alive and hear her cry. I prayed that when she went to Heaven she would be in my arms," Cone said. 

That's just what happened. 

On July 20, 2015, at 7:17 a.m., Clara Grace Cone was born alive.

She was crying and whimpering like other newborns, Cone said, with soft pink skin, a perfect round head, dainty features, and a full head of dark hair.

"From the outside one would never know her heart was broken," Cone said. 

When her older brother and sister visited, Clara opened her eyes wide — the only time she opened her eyes, Cone said. 

"She just looked at us and she smiled," Caden said. 

Clara was baptized and family members visited. 

Her hair was washed, and she was dressed in a gown made out of Cone's wedding shawl.

"I held Clara close, skin to skin, taking in every little whimper and breath and warm touch," Cone said. "Her breathing started to slow, and looking at her in that moment my heart knew she went to be with our Lord at 8:21 a.m."

She had lived for just 64 minutes. 

But more than four years later, her presence is still felt in Cone's home. Her photos are on the wall. The family talks about her. She's not forgotten. 

"My friends and coworkers, people still talk about her. On her birthday, we still celebrate her," Cone said. "She's got her name in a room upstairs just like the other kids. There are pictures everywhere."

The only difference is that Clara's photos stay static, ever a newborn, while Calen and Cadie grow and change. 

'It's not enough time'

Cone said that throughout the 64 minutes of Clara's life, the thought of "more time" kept going through her head. 

"When I was holding Clara and her breathing was slowing, I said to myself, 'No, not yet, not yet. It's not enough time,'" Cone said.

The Cone family didn't have a CuddleCot, so as soon as Clara passed, she began to change. 

"No one can really explain to you the changes that are going to occur," Cone said. 

Within minutes, the pink color faded from her face. Within hours, her body became cold to the touch and her lips and body turned purple and blue. 

"By late evening, my husband had said she was changing and we would want to remember her as beautiful as she was. He told me we would soon need to let her go," Cone said.

Cone's cesarean section prevented her from accompanying Clara on her journey. 

"Giving Clara that last hug," Cone said, "and holding her for that final moment before handing her to my husband ... was one of the most difficult moments in my entire life." 

One thing Cone hopes every family hears and holds on to is this:

"Your baby is still loved and they're still remembered."

This story was written by St. Cloud Times reporter Stephanie Dickrell. Follow Stephanie Dickrell on Twitter @SctimesSteph, like her on Facebook, call her at 255-8749, or find more stories at sctimes.com/sdickrell.

How you can help

Donate to the Family Birthing Center online at centracare.com/foundation/ways-to-give.

Find other ways to donate to the CentraCare Health Foundation, visit centracare.com/foundation/ways-to-give.

Donate to Hope Remains online at hoperemains510.org/donate.

How to find support after infant and pregnancy loss

To connect with resources and other families who have experienced infant and pregnancy loss, visit hoperemains510.org .

St. Cloud Hospital has a support group for parents. Find out more by contacting the Family Birthing Center at 255-5745 or at centracare.com/services/birthing-services/st-cloud/family-birthing-center.