WINNETKA, IL — For most expectant parents, the labor and delivery waiting room is typically a place to rejoice over a new life. But for tens of thousands, it can turn into a place of sudden shock, grief, and loss. For one couple, the stillbirth of their daughter turned into impassioned advocacy to support parents who experience pregnancy loss or infant death.
Nearly 10 years ago, 32 weeks pregnant Berkley Wellstein and her husband, Bob, experienced the unimaginable loss.
“We went to the hospital, and they discovered that she no longer had a heartbeat,” said Berkley Wellstein.
Their baby girl was gone.
“This was actually the blanket that she was wrapped in after she was born,” Berkley said, pointing to a pink and white striped blanket fashioned in the shape of a heart inside a frame.
For the Wellsteins, the shock and grief of that moment turned into purpose: to keep their baby Jane’s memory alive.
“Throughout our house, you can really find Jane everywhere,” she said.
Though infant mortality has dropped to an all-time low, more than 21,000 babies are stillborn in the United States each year. Yet, for thousands of families in the immediate aftermath, there is no place to mourn.
“Leaving the hospital empty-handed with these memories and that feeling of, ‘OK, we aren't alone, this actually does happen,’ made us want to want to give back to others,” said Berkley.
It’s why the Wellsteins created the nonprofit Jane’s Room, a way to afford grieving families the space they need in hospitals and medical centers.
“As we walk in, you can kind of instantly tell that this is a little bit different than most hospital spaces,” said Bob Wellstein, now the president and executive director of Jane’s Room. “It doesn't feel like a medical room. It's a little bit more of a respite. We try to bring in touches of wood. We bring in life, sometimes through the different types of plants that we have in the room.”
Each room is designed to provide comfort by allowing families to gather together in privacy to support one another and find their own way forward.
“It's an incredible gift this family gave to have this room here,” said Kim Sangster, a bereavement support and education coordinator at Rush University Medical Center, home to one of the Jane’s Room spaces.
“We had a mom and a baby in the NICU who died, and they wanted time to be able to just hold the baby and walk around in a space and give the baby a bath. And we brought mom, baby, and grandma over here to be able to do that,” said Sangster.
In the last decade, Jane's Room has built 10 rooms in Illinois, Pennsylvania, North Carolina, and Texas to help support more than 2,600 families. Three more are being designed and developed.
“We're going to continue this process until we're in every major market and we're able to reach as many communities and families as we can,” said Bob Wellstein.
Today, the Wellsteins have three more children. And though they’ve never met their big sister Jane, she remains a constant source of love and hope for them and so many others.
“We tell them as much as we think that they can understand, and we tell them that it's hard to understand. We don't even understand it,” said Berkley Wellstein. “They know who she is. They have their t-shirts that they wear on special days. It feels right and good that we share Jane with our kids just, you know, as if she is their sister because she is.”