EXPERTS ADVISORY

October 15 is Pregnancy Infant Loss and Remembrance Day, an international day to remember the 1 in 4 individuals and families whose lives are changed by the death of a child during pregnancy, at birth or in childhood.

Several University of Michigan researchers can comment on the psychological and social concerns of parents who have lost a child, and offer suggestions for how to ask for support and tips for those who want to provide encouragement.

Nazanin Andalibi

Nazanin Andalibi is an assistant professor at the School of Information who specializes in understanding how social computing systems can be designed to facilitate meaningful interaction and realize opportunities for social support. Her research looks at sensitive disclosures such as pregnancy loss and interactions around these disclosures in social media.

“If others in a person’s network were talking about their own experiences with pregnancy loss–or getting involved in social media campaigns, like Pregnancy and Infant Loss Awareness Day–that made it easier to join in and discuss their own loss. People also talked about their experiences because they wanted to be a source of support for others in their networks.”

“Much research suggests that anonymity helps people express themselves more freely online. In my research, I’ve found that more anonymity on sites like Reddit can help people to both seek and provide social support while feeling safe from stigma. I also found that starting with an anonymous post on a site like Reddit can help people feel more comfortable with a future disclosure under their own name on a site like Facebook.

Contact: andalibi@umich.edu

Katherine J. Gold

Katherine Gold is completing her term as chair of the International Stillbirth Alliance, the largest global coalition working to end stillbirths and perinatal deaths and promote respectful bereavement care. She is an associate professor in the departments of Family Medicine and Obstetrics and Gynecology and is a member of the U-M Depression Center. Her research focuses on mental and physical health outcomes when a baby dies in stillbirth or early infant death, and she is internationally known for her work in this area including in low-resource countries.

“Stillbirth—when a baby dies in the second half of pregnancy—and early infant death are typically traumatic and devastating events for families and it can take years, decades to recover,” Gold said. “More babies die in stillbirth or in the first month of life than deaths from all homicides and all suicides in the United States each year. This is a serious public health issue with a sobering racial divide. In the U.S., African American women are twice as likely as other women to have a baby die.

“If you know a family who has had a loss, take a moment to reach out and let them know you are thinking of them and their baby this October. These losses are often not acknowledged, leaving families to grieve alone. Don’t try to come up with the perfect consolation for a grieving family. ‘I’m so sorry,’ is all you need and this means a lot.”

Contact: bmostafa@umich.edu

Charisse Loder is an assistant professor and director of clinical family planning services in the Department of Obstetrics and Gynecology. She currently is collaborating with health care providers in multiple specialties, including pharmacists, nurses, genetic counselors and social workers, to expand pregnancy loss services at Michigan Medicine.

“My patients tell me how difficult it is to experience the physical signs and symptoms of pregnancy after a loss is diagnosed,” Loder said. “It can feel like another blow to still feel nauseous or feel a belly that has stopped growing, and to understand that the future they envisioned with this pregnancy will not come to be.

“Because of this, many patients want to know about their treatment options right away so that they can focus on their physical and emotional recovery. I am proud that our department has expanded medical and surgical treatment options for pregnancy loss so that patients can choose a setting and timing that is best for their needs.”

Contact: bmostafa@umich.edu

Kate Bullard

Kate Bullard is a clinical social worker in the Department of Psychiatry and manages the Women and Infants Mental Health clinic that helps women and families cope with a broad range of pregnancy-related mental health concerns, including those related to reproductive loss. She focuses especially on the emotional, psychological and social aspects of pregnancy loss.

“Helping families with pregnancy loss is both heartbreaking and also a great honor. I have the privilege of witnessing the depths of love, hope and resilience,” Bullard said. “While pregnancy loss has similarities to other losses, there can be unique challenges.

“Often it feels like an ‘invisible loss.’ Frequently, there are intense feelings of isolation. People feel very alone. There tends to be less social support and understanding of this type of loss by family, friends and colleagues. Well-meaning words can feel very hurtful.

“For some pregnancy losses, many people in one’s life did not know about the pregnancy, and don’t learn about the loss and therefore can’t offer support. Additionally, with some types of pregnancy loss (miscarriage), there is no ‘baby’ to see, hold or bury. And for many pregnancy losses, there may be no memories of the baby’s life outside of pregnancy. The memories of the birth are commingled with the death. Pregnancy losses are often unexpected and traumatic.

“Parents are not only grieving this pregnancy, but are grieving all the hopes, dreams and expectations of parenting. Pregnancy losses leave many people feeling responsible, guilty, damaged and with feelings of failure, despite the fact that the parent did nothing wrong.”

Contact: kegavin@umich.edu