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After her first loss in 1986, which she calls “the worst and most confusing experience of my life,” Layne, an anthropologist, dedicated herself to ending the silence that shrouds pregnancy loss.
When she became pregnant with her first child at age 30, she says she wasn’t even aware that it was possible for her to miscarry.
“Miscarriage never came up during any of my prenatal visits. And I devoured pregnancy books, eager to learn about the minute details of my baby’s development but they, too, failed to mention the topic of pregnancy loss.”
When she began to show signs of a possible miscarriage at 13 weeks, Layne was told by her midwives to go to the emergency room. They did not go with her, although they would have if she was in labor and something went awry. Afraid, she hoped the doctors in the hospital could explain what was happening. What she got, however, was a gruff physician who announced that the loss was imminent and then left the room. Nurses prepped her for a medical procedure to remove the materials from her womb and wheeled her away. Before she knew it, the pregnancy she pined for was over.
Furious about the lack of information she was given about the potential for pregnancy loss, Layne began to ask questions.
Why had women worked so hard to reclaim control of their pregnancies fighting for their rights to decide where they could give birth, who could be with them, and for adequate information about the process but such advances had not occurred regarding pregnancy loss?
In the 64-page booklet her clinic gave to all patients during their first prenatal visit, why was miscarriage not discussed until page 49, and then why were only four lines devoted to the topic?
Why had Layne’s midwives informed her of their protocol in case of emergency cesarean section, but not discussed what would happen in the case of miscarriage during the first three months of pregnancy when pregnancy loss occurs in one in five women?
Why is the comfort and quality of the birth experience given a great deal of attention, but no such concern is offered to women who miscarry?
Why don’t we expect family members to grieve for the loss of a wished-for pregnancy, the way we grieve for so many other losses in our lives?
Fifteen to 20 percent of all pregnancies end in loss, according to the American College of Obstetricians and Gynecologists (ACOG). Layne calls miscarriage “an utterly common medical event.” So why doesn’t anyone talk about it?
Trying to answer these questions, Layne realized that anthropology could help shed light on the factors that made the devastating experience of pregnancy loss even worse. She joined a local support group and began investigating the experience of loss among the group’s members using an anthropological research method known as participant observation. Using the technique, researchers immerse themselves in the subject being studied to gain deeper understanding. Dealing with her own losses, Layne studied the topic as both an observer and a participant.
Shattering the Silence
Layne presented her findings in the book Motherhood Lost: A Feminist Account of Pregnancy Loss in America (Routledge, 2003). The book was immediately endorsed by UNITE and SHARE, two prominent pregnancy loss support groups in the United States. Finally giving voice to a subject shrouded in silence for so long, Layne became an expert in the emerging field of research and was asked to discuss her findings with The New York Times, Boston Globe, Newsday, Chicago Tribune, and other major media outlets.
In the book Layne explored the fact that pregnancy losses in this country are rarely acknowledged or discussed. “Grief for a dead loved one may be both inevitable and necessary, but the additional hurt that bereaved parents feel when their losses are dismissed and diminished by others is needless and cruel,” she says. “It is high time we recognize pregnancy loss and offer our support.”
In the final chapter, “Breaking the Silence: A Feminist Agenda for Pregnancy Loss,” Layne called for four changes that she believed would create a “woman-centered approach” to pregnancy loss: increased information about pregnancy loss, the right to choose how to handle an imminent loss, the option of a caregiver to assist with a loss, and increased social support from the medical community and society. She based her proposals on several principles of the women’s health movement of the 1970s, which empowered women to take charge of all aspects of the birth experience.
“First-person accounts indicate that middle-class American women feel supremely unprepared for pregnancy loss,” says Layne. “First and foremost, women must be informed knowledge is power. I’d like to see information about pregnancy loss provided to women by their doctors at the earliest possible time, since most losses occur in the early weeks of pregnancy. Many women receive care even before they conceive when they are contemplating starting a family that would be the correct time to approach the subject.”
Pregnancy loss discussed face to face, supplemented with printed information that women could keep in their homes and refer to in the event that they experience a home loss similar to her own, is the key to allowing women to take control of their situation, says Layne. She also found in her research that many healthcare providers are hesitant to inform women of the risk of pregnancy loss because they fear scaring them, and because it’s an unpleasant topic to discuss during what’s likely to be a happy time in a woman’s life.
“There’s no excuse for not educating a woman pregnant or not about the possibility and probability of miscarriage,” says Layne. “As a society we need to stop being paternalistic and sheltering people from unhappy things. There used to be a time when we didn’t tell cancer patients that they had cancer or that they could die, because it was difficult for us to say, and for them to hear. We don’t do that anymore it’s considered demeaning to withhold information from the person to whom it directly relates.”
Advances in the management of pregnancies have led to increased early diagnoses of miscarriages. Layne argues that doctors should use this added time to explain to women their care options, allowing them to select a setting that will work best for them. Unlike births all but 1 percent of which take place in hospitals in the United States pregnancy losses occur in a wide variety of settings: hospitals, homes, obstetricians’ offices, and clinics.
“Women need to be instructed in the pros and cons of each of these venues so that they may choose the location that best suits them, and so that they will know what to expect during and after a loss in that setting,” says Layne.
She also believes that women who choose to have a surgical procedure should be treated with the same dignity as a woman giving birth. Although women who give birth in medical venues do so in a comfortable room often decorated like a bedroom at home, such courtesies are not extended to women who are miscarrying.
“Women who miscarry are essentially viewed no differently than patients who are having routine surgery,” says Layne. “They receive the necessary medical attention and they are sent on their way, without any concern for their emotional state.”
Home miscarriages are becoming increasingly common with efforts to manage health care costs, and in many ways they can be more traumatic than a medically managed loss, according to Layne. She notes that women who miscarry naturally typically do so alone or with an equally unprepared partner something that would never happen during a full-term birth.
“The option of a caregiver should be extended to all women who are experiencing a pregnancy loss,” Layne says. She also recommends making available pregnancy loss kits, which could include disposable bed pads, sanitary napkins, pain medication, and instructions.
“Although there are elements of distress over the loss of a wished-for baby that no one can relieve, the presence of a trained caregiver, who knows what to expect, who is familiar with what’s taking place physically, and who can reassure a woman during the process, would greatly reduce the fear that accompanies handling this experience in isolation,” says Layne.
Social support also is crucial for women who have experienced loss, says Layne, stressing that women who miscarry are often caught in “a private space of shame,” as she calls it in her book left to grieve alone because family and friends can’t comprehend their pain.
“The cultural silence is profoundly real,” says Layne. “Many times the remains of a miscarriage are disposed of, and everyone acts as though nothing has happened. The taboo around pregnancy loss in this country stifles a woman’s ability to grieve and to heal.” Layne contends one way to end the silence is by broaching the subject in popular culture, with more frequent, honest, and detailed depictions of loss on television and in books and magazines.
While Layne was working in Jordan in the 1980s, a pregnant co-worker miscarried. Days later she invited Layne and some other friends over for a ritual meal. Each of the guests brought the grieving woman a gift, acknowledging that she had the loss and more importantly, that she had their support.
“Support rituals that focus on the woman and not on the lost child can help reduce the trauma felt by the would-be mother,” says Layne.
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