When a baby dies, NCH helps families grieve and remember

Society doesn’t treat perinatal grief the same way it treats other grief.

Parents who experience a perinatal loss – losing a child to miscarriage, giving birth to a stillborn, or having a baby die within the first few weeks of life – sometimes get condolences with well-intended but hurtful, dismissive comments like, “Oh, you can just have another baby,” “It was early, so it’s OK” or “You can just move on.”

People don’t always understand that losing an unborn or newborn baby is a difficult emotional journey, one where parents often feel alone. That’s why NCH, a pioneer in perinatal grief support, gives parents a safe place to gather and grieve.

One way it does this is with its Walk to Remember. This year’s 28th annual walk Oct. 14 drew nearly 100 people for a heartwarming program that included a sharing session, slideshow of names set to music, walk around the hospital campus and bubble-blowing ceremony in the memorial garden followed by snacks and drinks. Some couples brought their other children, making it a family event, and a sign that life can go on after loss.

“There were tears,” says Jill Kottmeier, NCH’s Perinatal Palliative Care Coordinator. “It’s hard to talk about death in general, but when you talk about the death of a baby? It’s really hard. Parents are craving someone to acknowledge and remember their child.”

The walk, which is free and open to the public, is part of NCH’s growing Perinatal Palliative Care Program. Working with the Renew Through Sharing (RTS) Program, NCH hosts a monthly grief support group for perinatal loss and a butterfly release in June (between Mother’s Day and Father’s Day). Staff assembles folders with educational information given to parents when they leave the hospital.”

“It’s a whole different way to care for the family, not just when they go home from the hospital, but for years after,” says Kottmeier, who spent 17 years at NCH as a labor and delivery nurse before taking over RTS.

This year, NCH began partnering with the charity Westin’s Fund created by Christina and Ian Voigts, a Mundelein couple who, in 2015, lost their son Westin during the second trimester. 

Westin’s Fund raises money to help parents withstand the one-two punch of losing a baby and then receiving a hospital bill. The fund contributes money toward that bill so parents can focus on grieving and use their money for self-care or other immediate needs.

Christina was 16 weeks pregnant when, for reasons doctors couldn’t pinpoint, Westin’s heart stopped beating. Christina delivered Westin at NCH, and continues to keep his memory alive. She shares details of her experience in her blog.

A few months after Westin’s death, the Voigts got a bill in the mail for nearly $3,000, causing the pain of their loss to come rushing back. 

“You expect it, because the doctors, nurses and everyone has to be paid for doing their jobs. Still, when you get that bill in the mail, it’s all very tough again. It serves as a reminder of what you don’t have,” says Christina. “We hope that something good can come from something bad.”

According to the March of Dimes, one in four women in the U.S. experiences a miscarriage of a baby up to 20 weeks. Stillbirth affects one percent of all pregnancies, or 24,000 babies a year, and four out of 1,000 babies die in the first 28 days of life.

NCH was one of the first hospitals in the suburbs to have a support program for perinatal loss, Kottmeier says. Some people have been coming for the entire 28 years of its existence.

“People say, ‘How do you do what you do? It’s so sad.’ But it’s such an incredible thing to help these families,” Kottmeier says. “To watch them heal and go on to do great things, like the Voigts are doing, that’s really a privilege to watch.”

Learn more about the Perinatal Palliative Care Program at NCH or call 618-8415.