Disenfranchised grief: A day to remember pregnancy and infant loss

As people across the country mark Pregnancy and Infant Loss Remembrance Day on Oct. 15, a nurse practitioner who helps families cope with such losses said the occasion serves as a reminder that they’re not alone.

“Often, we call a loss during pregnancy or even an early loss ‘disenfranchised grief.’ It's grief that's sometimes not openly acknowledged or accepted by others,” said Carrie Cormack, DNP, APRN, and Distinguished Professor in Palliative Care at the Medical University of South Carolina’s College of Nursing. Palliative care focuses on improving quality of life and relieving physical, emotional and spiritual suffering for people facing serious illnesses.

“Acknowledging this day acknowledges the loss and the love that many families carry for their child.”

Formally honoring those lives and the people affected by them began back in 1988, when President Ronald Reagan proclaimed October National Pregnancy and Infant Loss Awareness Month. More recently, advocates succeeded in securing recognition of Pregnancy and Infant Loss Remembrance Day in mid-October.

 

They knew such losses affect many people. For example, early pregnancy loss, or miscarriage, occurs in about one in 10 pregnancies. But early doesn’t mean the loss doesn’t hurt, Cormack said.

“A lot of people delay letting others know they’re pregnant in the early months, and if there's an early pregnancy loss, they may feel they like they need to deal with it privately.  Maybe they're back to work the next Monday, picking up right where they left off. But certainly, in their hearts, it's a loss that sits with them for a very long time – forever, in many cases.”

So do losses that occur further along in pregnancy, during childbirth or in infancy. As a palliative care nurse practitioner in the MUSC Shawn Jenkins Children’s Hospital’s Advanced Fetal Care Center, Cormack sees both the struggles and strengths of families who receive difficult fetal diagnoses. 

“My role on the team is really that of support. I often say to a family, ‘I know this isn't what you expected. What can I do to help you navigate this news?’”

She listens to the answers and acts. “Some families are hopeful, and I say, ‘OK, I'm going to be hopeful right along with you.’ Maybe faith is something that's really important to that family. So I offer, ‘OK, let's pray together or let me get our chaplain and have them say a prayer with you.’”

She also connects people with other experts who can help as families sort through complicated feelings. Cormack said there’s no timeline for grief or a right way to react to difficult news. “People say that losing a child, no matter at what stage, can be one of the most painful losses a person can experience.”

Her advice for people whose loved ones or friends have suffered such a loss? “If you hear this news about someone, be present, acknowledge that loss, talk to them about it, don't be afraid to bring it up. It won’t remind them that they went through this. They haven’t forgotten.”

She knows this firsthand. Her team has a bereavement program that follows up with families whose children have died. This includes families that have lost pregnancies or infants. 

“We call families at structured times after the loss, at one month, at three months, at six months, at nine months and a year. Many families will tell us, ‘No one wants to talk to us about it. They don’t know what to say. Thank you for calling. Thank you for being the one that reaches out. We think about it every day.’”

Whether it’s a phone call or a compassionate “How are you doing? I know you’ve had a difficult year,” Cormack said the gestures matter.

“The more we can create space to remember families that have gone through this, acknowledge the loss in a public way and normalize grief a little bit, the more that healing can happen for families.”

The MUSC Shawn Jenkins Children’s Hospital will hold a Pediatric Service of Remembrance on Oct. 18, at Charles Towne Landing’s Founders Hall, starting at 3 p.m. For more information, please email.