Jane's Room at UPMC Magee is a solemn hospital space for grieving parents, families
Berkley Wellstein felt the silence.
Her baby wasn’t moving.
“I was 32½ weeks pregnant, and it was a normal pregnancy,” Wellstein said, as she stood with her husband, Bob, on July 8 inside UPMC Magee-Womens Hospital in Oakland. “There was a lack of movement. I went to see my doctor. We were told our baby didn’t have a heartbeat.”
The date was Jan. 24, 2012. The next day, Jan. 25, was baby Jane’s birthday and the day she died.
This was supposed to be joyful, a time to celebrate their child.
Among other parents welcoming their newborns, the Wellsteins had to say goodbye to their baby girl. There wasn’t anywhere in Northwestern Prentice Women’s Hospital in Chicago where they could be alone to try to comprehend what was happening.
They don’t want another parent to feel that they don’t have a place to grieve such an immense loss.
Jane’s Room
They created Jane’s Room, a space in a hospital where parents and families experiencing pregnancy loss, infant death or hardship can have the room they need.
The first such room opened in Northwest Community Hospital in Arlington Heights, Ill., on Jan. 25, 2013, the day that would have been their daughter’s first birthday.
They recently cut the ribbon on the 10th Jane’s Room at Magee.
“We felt so alone through the entire experience,” said Bob Wellstein. “We lost parenting. We lost hopes and dreams.”
Devastating loss
According to the Centers for Disease Control and Prevention, 1 in 160 births are stillborn and about 24,000 babies are stillborn in the U.S. each year. According to the CDC, infant deaths in 2019 were 20,921. The number of deaths per 100,000 live births each year is about 558.
Stillbirth is defined as a fetal death in the womb after at least 20 weeks of pregnancy, according to the Cleveland Clinic. Before 20 weeks the loss is classified as a miscarriage. If the baby is born alive and then dies shortly after being delivered, that is not considered a still birth.
With baby Jane, the umbilical cord was wrapped around her neck twice. Bob Wellstein was in the delivery room but on two occasions was asked to leave for a few minutes. He went to the family waiting lounge and saw people with balloons and flowers and smiles on their faces.
“I sat there and thought to myself, that Berkley, Jane and I were on the complete opposite side of the spectrum from these people,” he said. “They were celebrating. We were hurting. We are still hurting.”
Others Jane’s Room locations include Rush University Medical Center, Advocate Lutheran General Hospital, Advocate Christ Medical Center, Advocate Illinois Masonic Medical Center, University of North Carolina Medical Center, Northwestern Prentice Women’s Hospital, Northwestern Lake Forest Hospital, Children’s Memorial Hermann Hospital. They plan to open Jane’s Rooms in Spectrum Health Butterworth Hospital, Advocate Good Shepherd Hospital and Adventhhealth Orlando.
People can donate here.
A private space
Berkley Wellstein said they want the space to be a place for grieving, for photo shoots if parents want that, for religious ceremony or just an area away from everything that’s happening in a maternity ward.
The room has a comfortable couch, two chairs, tables and lamps with lights that can be dimmed. There is an area for food since parents may need the room for a few days. Most Jane’s Rooms are 200-square feet or larger.
“We wanted it to have a living-room feel and to not feel like they are in a hospital,” Berkley Wellstein said.
The Wellsteins chose UPMC Magee because of its high volume of births, care of high-risk pregnancies, and it had adequate space available. They shared their trip to Pittsburgh and other stories about their family on Instagram.
The Jane’s Room foundation donated $40,000 for the room and for bereavement resources that UPMC Magee staff will use in helping families with a loss. The cost of the room was a little over $35,000. The project is a partnership between UPMC Magee and Magee-Womens Research Institute and Foundation, which served as the conduit for working between Jane’s Room and the hospital.
“UPMC Magee-Womens Hospital is honored to be partnering with Jane’s Room,” said Dr. Richard Beigi, the hospital’s president. “A space like this one can give parents and families a space to grieve. It is so very important. We thank Berkley and Bob for this.”
The couple is originally from Perrysburg, Ohio, but lives in Winnetka, Ill. They are parents to William, 7, Georgia, 5, and Vera, 2. Bob Wellstein is president and executive director of Jane’s Room. Berkley Wellstein is vice president and secretary.
“You never get over the loss of your child,” said Bob Wellstein. “That experience is part of who we are. This was a priority for us to offer some support for others who will go through what we went through.”
Berkley Wellstein said it is bittersweet to visit each Jane’s Room. They chose Jane for her name because it was one the couple loved.
“I still get choked up about,” she said. “We we want people to remember she existed. Our wish is that nobody would have to go through this. But when they are in this room we want them to know they have support and love, support and love from Jane even if she never took a breath in the outside world.”
Sometimes silence speaks more than words.
JoAnne Klimovich Harrop is a TribLive reporter covering the region's diverse culinary scene and unique homes. She writes features about interesting people. The Edward R. Murrow award-winning journalist began her career as a sports reporter. She has been with the Trib for 26 years and is the author of "A Daughter's Promise." She can be reached at jharrop@triblive.com.
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