In a hospital waiting room, dozens of pregnant women and their families are waiting for their turn to be called. They can’t wait to find out the sex of the baby. They can’t wait for those first ultrasound pictures.
But one woman sits in a dark corner with her partner. She isn’t excited at all. The last time she was here was when she found out her baby died. And she’s terrified.
Unfortunately, this is a common situation. An estimated one in four pregnancies ends in a miscarriage. In Canada, about one in 125 pregnancies ends in a stillbirth, which is the death of a fetus in utero after 20 weeks’ gestation.
Women who’ve had a pregnancy loss often feel fear, anxiety and uncertainty during a subsequent pregnancy, as well as joy. Key times like ultrasounds can be traumatic. These women can be frustrated by health information that does not recognize their conflicting emotions.
As a medical librarian, my job is to connect people to trusted information about their health. Medical librarians research how people find and use health information in many contexts. So when I lost my twin sons to stillbirth at 36 weeks, I was disappointed that there was little information available for women like me — women who were pregnant again, but without having given birth to a live baby.
Stillbirth as failure
I conducted a research project in which I interviewed six women in depth over the course of their pregnancies after loss. I wanted to know what sort of information would be helpful to them throughout the various stages of their pregnancies. How did they want to receive information about their pregnancy? What were their greatest concerns? How were they managing their emotions?
Most pregnancy books and websites downplay the risks of pregnancy loss. Instead, they emphasize the role of personal responsibility in maintaining a healthy pregnancy. My research found that for women who have experienced a loss, this can be both isolating and condescending. For example, the slogan to Health Canada’s website on pregnancy is “A Healthy Pregnancy is in Your Hands.” To a woman who had a loss in her last pregnancy, it implies that it was her fault. Even the word miscarriage can suggest that it is the woman who failed to carry the pregnancy.
While much of the information these women want is the same as other women, they want it delivered in a way that is sensitive to their past experience. An ultrasound is a joyful time to catch a glimpse of your baby, get keepsake photos and more information about the health of your baby. It is also a frightening time when a woman might experience flashbacks, or get reassurance that her baby is growing normally.
Navigating pregnancy questions
Women are also interested in pregnancy information that is unique to the experience of loss. Many of the women I interviewed wanted guidance on how to navigate common pregnancy questions, such as an innocent stranger in the grocery store line asking “Is this your first?” A simple question for many people, but a loaded one for a woman who is pregnant after a loss. People are often uncomfortable discussing miscarriage and stillbirth and answering that this isn’t your first can lead to further questions as people assume that you have a child at home.
Other sources of pregnancy information, such as prenatal classes, can also be difficult for these women. Most hospitals and health units offer these classes for new mothers, but the women I interviewed felt reluctant to attend as their past histories were not welcomed by the other women, who wanted only positive affirmations about pregnancy and giving birth.
While larger hospitals, like Sunnybrook in Toronto, have dedicated departments for women who are pregnant after a loss, this isn’t available to everyone. And women in rural or remote areas often have limited access to in-person support.
Delivering health information that is relevant to a women’s unique issues shouldn’t be this much of a challenge. Pregnancy after a loss is common, so it’s time pregnancy guides reflected this.
Amanda Ross-White is the author of Joy at the End of the Rainbow: A Guide to Pregnancy After a Loss.