“Amanda Ross-White takes us into the worlds of six courageous mamas and gives us hope by following them through their pregnancies after loss. A dedicated researcher, Amanda combines her personal experience with evidence-based research into creating this much-needed book for the mom pregnant again after a loss.” – Lindsey Henke (from the foreword).
“Beautifully written with excellent medical references and clear suggestions for an expecting mother with a sad history. I would recommend this book to everyone going through a pregnancy after a loss!” – from Amazon
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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.
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.
Women who are pregnant after losing a child can find themselves isolated with their fears. (Shutterstock)
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.
With my first pregnancy after loss, my grief over losing the boys was still very raw and close to my heart. I still was showing a lot of symptoms of depression, so my doctor kept me on antidepressant medication. In my case, I was prescribed citalopram. With a small dose, I was able to keep on top of things and function throughout the day. But over the course of my pregnancy, and working with my doctor, I weaned myself off it. It may not have been the best idea. For most of the first 9 months of my rainbow daughter’s life, I remained stuck in depression and wasn’t really able to enjoy her. I was so worried that the medication would have a negative effect on her development, I didn’t think much about whether the depression itself might also not be very good for her, or for me.
It turns out I’m not alone in this. A recent study asked pregnant women what they believe about taking medication during pregnancy. The researchers spoke to more than 1000 women in the UK who were either currently pregnant, or had given birth within the past year. They were asked questions about what medications they take and what they believed were the risks associated with taking various medications, including over-the-counter medications like acetaminophen/paracetemol or heartburn remedies.
Three out of every four women reported taking some kind of medication while pregnant, whether over-the-counter or prescription. But roughly the same number of women told the researchers they avoiding taking something while pregnant, most commonly acetaminophen/paracetemol, ibuprofen, cough/cold remedies and, antihistamines. The reason they usually gave was because, like me, they were afraid it would harm their baby, because they believed the medicine could not be taken while pregnant or because they wanted to endure as much pain/suffering as possible before taking medication as a ‘last resort’. More worrisome, some mothers reported not taking medication for conditions like a urinary tract infection, which if left untreated could harm both them and their baby.
As mothers who have lost a child, we are understandably more nervous. Like all mothers, we want what is best for our babies, and we are prepared to sacrifice a lot, including our own comfort, to ensure our baby’s safe arrival. But there are times when medication is necessary, and we should not feel guilt or reluctance to use medication when it is required. As my doctor described it as I asked for an increase in pain medication when sick with my second rainbow, “I think you’ve suffered an awful lot to have this baby safely. There is no need for you to suffer in agony unnecessarily. It is perfectly okay to get help.”
If you have questions or concerns about medication use when pregnant, please, please, please talk to your doctor, midwife or pharmacist. Many medications we take are completely safe and the consequences of not taking them can be severe. We’ve suffered enough to have our rainbows, we need to be kind to ourselves.
This week is Nursing Week! Amanda Ross-White’s letter to her nurse is featured on the CBC Radio program White Coat, Black Art
Because I work with nurses every day, I feel a connection to them. One of the things I ask the new nursing students in September is why they want to be a nurse, and what type of nursing they hope to do. I am amazed at how many of those young students want to work in obstetrics, specifically because they don’t want to deal with sadness. Of course, their eyes are opened sometime before they graduate. Working in obstetrics does not keep the sadness and grief at bay. And most of them turn out to be the kindest, most dedicated nurses, even when coping with death every day. I admire them so much for their ability to hold it together, and to guide us into motherhood, when a pregnancy ends.
Nurses, we don’t thank you enough for all you do. Please remember our gratitude during your toughest days. Even if your patients do not always say so, we really are grateful.
Amanda Ross-White’s writing featured in the New York Times online supplement Your Stillbirth Stories!
I can tell you that you will always remember this moment. Those few precious minutes or hours you spent with your baby will be a part of you forever and you will spend the rest of your life digging into your memory to reclaim them.
Amanda Ross-White is the author of 
JOY at the end of the RAINBOW 