Debbi Clarke and Kara Simmons both have spent the majority of their careers at UNC —Debbi at the Business School and in the Office of the Executive Vice Chancellor and Provost, and Kara in the Office of University Counsel. However, their paths did not cross until late 2015 when they met for coffee to talk about their shared experience of losing their babies.

Image of Baby's Feet
Pregnancy and Infant Loss Remembrance Day is October 15. The day is observed with remembrance ceremonies and vigils, concluding with the Lights of Love International Wave of Light, a worldwide lighting of candles at 7:00 p.m. (local time) – Photo of Madeleine Ava, courtesy of Kara Simmons and Brian Johnston.

Kara and her husband Brian Johnston had recently lost their daughter Madeleine Ava at 27 weeks. Kara had not felt her baby move and went to the hospital for what she thought would be reassuring confirmation that her baby was okay, only to learn that her child had died. In the haze of receiving this unimaginable news, she also learned that she would have to go through labor and deliver her baby. She was induced, and her baby was born still one day later. She and Brian had planned to learn the baby’s gender at the time of its birth, anticipating a joyful moment when the doctor would pronounce, “It’s a boy!” or “It’s a girl!” Sadly, Kara and Brian learned that their baby was a girl in a quiet, mournful moment just after Madeleine was born still. Kara and Brian had long ago decided they would name their first daughter Madeleine, and they chose Ava to honor Kara’s mom, Eva, who died when Kara was 18.

Debbi and her husband Walt had walked a similar path two years earlier when they learned that their son, Eason Randolph Clarke, had died at 36 weeks. Like Kara’s loss of Madeleine, Debbi’s experience also was unexpected, what her doctor later called a “lightning strike.” She was induced and Eason was born still 16 hours later on February 16, 2013. Debbi and Walt gave Eason his middle name after Debbi’s father Randy, who subsequently passed away just 11 months after Eason.

Debbi describes perinatal loss as, “an honor and a burden of parenting; when your child is born still you carry them for the rest of your life. Sometimes that’s difficult for people to understand, particularly why you’re grieving so deeply for someone whose life was so short.” Early in their grieving, both women and their families found ways to honor the legacies of their children: Kara’s family funded a garden next to UNC’s School of Media and Journalism, Kara’s alma mater. Madeleine’s Garden, with its white bench and hanging vines, offers a place for the UNC community to sit and just be. Debbi and Walt donated two CuddleCots in Eason’s name to the North Carolina Women’s Hospital. A CuddleCot is a cooled bassinet placed inside a Moses basket that allows families to spend more time with a baby who has died. North Carolina Women’s Hospital was among the first in the nation to start using the baskets, and through Eason’s CuddleCots, the Clarkes provide opportunities for families to preserve the time they have with their babies.

Debbi and Kara share the grief and trauma of having a child born still, but they also share the experience of receiving what they describe as “comfort, care, and support” from the nurses and doctors at UNC. Kara is grateful for her nurse, Holly Currin, who promised she would help Kara through every moment of her delivery of Madeleine. Debbi will always remember the nurses who cared for her and Eason, and the doctor who delivered him. They talked about this shared experience at their first meeting back in 2015, which took place just a few months after Debbi had attended a Return to Zero Retreat led by fellow grieving mother, Kiley Hanish. She says the retreat, and the opportunity it provided to be with other mothers coping with loss, was “life changing,” and she wanted to share that support in her relationship with Kara. Three years later, Debbi reflects on their friendship as a gift that their children Madeleine and Eason have given them.

Debbi and Kara want more women experiencing perinatal loss to have these connections and support throughout the grieving process. They are leading the effort to establish Jane’s Room as a national standard of care and advocacy for families experiencing perinatal and infant loss. The effort is in partnership with Holly Currin, Jane’s Room is a by Berkley and Bob Wellstein, who lost their baby daughter Jane in 2012. The Chicago family wanted a private space for parents and families who experience a loss or hardship while in the hospital. This concept resonated with Kara, who reflects on her father coming to the hospital as she labored with Madeleine only to wait in the same room as those celebrating the birth of children and grandchildren. In addition, as she recovered in the hospital, Kara felt a need to get out—to go somewhere other than a hospital room to try to begin to process her incredible loss. She wishes there had been a space where her father could have waited and where she could have gone to “experience even just one moment of peace.” Debbi underscores the importance of spaces like Jane’s Room in her observation that “when any trauma happens—we are grasping. Sometimes you just have to be.”

The Jane’s Room at N.C. Women’s Hospital, which will be the first Jane’s Room outside of Illinois, will open on October 16 as a part of a series of events marking National Pregnancy and Infant Loss Remembrance Day. In addition to the opening of Jane’s Room, Kiley Hanish, founder of Return to Zero, will be screening the film of the same name that she and her husband produced nearly ten years after the stillbirth of their son, Norbert. For Debbi and Kara, whose connection by their loss is eternal, the opening of Jane’s Room is just the beginning of their comprehensive efforts to raise awareness and to provide holistic care to women and families experiencing perinatal loss.

Upcoming Events:

Jane’s Room Dedication
Tuesday, October 16, 2018, 2:00 p.m.
North Carolina Botanical Garden

To RSVP and for more information about Jane’s Room, please visit:  tinyurl.com/uncwhc

 

Screening of “Return to Zero”, and Q&A with Co-Creator, Dr. Kiley Hanish
Wednesday, October 17
Doors open at 6:00 p.m.
Screening begins at 6:30 p.m.
The Varsity Theater

The Perinatal Loss Program Fund supports families who have experienced a loss during pregnancy or soon thereafter. If you are interested in contributing, please go to: http://go.unc.edu/PerinatalLossProgram or email Jodie Gisser, Director of Development – Women’s Health. You can also call Jodie at 919-843-9898.

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