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Communicating Pregnancy Loss: Narrative as a Method for Change

On Jan. 29, the College of Communication hosted Dimensions of Communication​, an opportunity for faculty members to share their latest research in an engaging manner. The event was “powered by PechaKucha” (say pe-chahk’-cha), a presentation style created in 2003 by a group of Tokyo architectural designers as a concise way to showcase work among peers. During a PechaKucha event, presenters speak on a particular subject while showing 20 images for 20 seconds each.

Five faculty members entertained the audience as they discussed their research subjects and interest areas. Jay Baglia​, a professor in the Health Communication program discussed his latest book, Communicating Pregnancy Loss, a collection of first-person narratives about the experience of pregnancy loss, which he co-edited with Rachel E. Silverman.

For more on Communicating Pregnancy Loss, see the writeup at DePaul Newsline.

At the National Communication Association annual meeting in New Orleans in 2011, Rachel Silverman and I went out for breakfast to discuss a common interest. My partner and I had experienced a miscarriage and so had Rachel’s best friend. We discussed the stigma of pregnancy loss and our culture’s peculiar non-response to it. Here is the result of that meeting over three years ago.

The contributors include 20 communication scholars from across the United States, activists, health care practitioners including a family medicine physician, a pediatric nurse, and a medical sonographer. Each first-person narrative employs various feminist theories, narrative theories, and performance theories as well as other well-known communication theories and concepts.

In health communication, researchers examine patient/provider communication, evaluate public health messages and news stories about health. We critique mediated dramas with a health focus and collect and study pathographies or illness narratives. It is an interdisciplinary field. Sociology, nursing, theatre, medical anthropology, literature, and psychology are all interested in the ways narratives shape our experiences of illness.

Narrative is the process and product of applying a structure to characters, scenes, time, and action and conveyed through a particular point of view (Polkinghorne, 1988). According to Jerome Bruner (2002): “Narrative in all its forms is a dialectic between what was expected and what came to pass. For there to be a story, something unforeseen must happen” (p. 15).

Narrative links the storyteller’s invisible world of perception and the external world of behavior capable of being interpreted by the senses. According to Mattingly & Garro (2000), illness narratives help make sense of experience, offer causal explanations, explore human temporality, and allow storytellers to communicate what is important in their lives. Storytelling offers what Eliot Mishler calls the “Voice of the Lifeworld.”

This exists in stark contrast to the biomedical “Voice of Medicine.” The medical chart does tell a story but it is a story of symptoms, lab results, objective data. Storytelling is subjective and in critical/cultural, interpretive, communication research, this is a valuable distinction that tells us a great deal of information can be and often is marginalized by differently trained members of the health professions.

This is a scene from the 2009 Academy Award-winning film Up (directed by Pete Docter and Bob Peterson) where Ellie has experienced a miscarriage. In this book we use the term “pregnancy loss” to refer to the loss of a desired pregnancy, including miscarriage and infertility. Terminology such as “baby” and “fetus” invokes debates over reproductive rights. To be clear, the assumption that the pregnancy was desired and the loss not by choice is inherent in our contributors’ stories.

It is important for me to state, however, that Rachel and I share the belief that reproductive rights constitute a fundamental human right. We’re convinced that the silence around pregnancy loss is, in part, the result of how we frame the phenomenon of pregnancy as occurring in stages – trimesters – and the loaded terms “fetus” and “baby” demonstrates how language is a critical component in the reproductive rights debate.

This volume is intended to expand the understanding of what happens when individuals and couples who desire a child do not have that aspiration fulfilled. As a third-wave feminist methodology, personal narrative is consciousness-raising “with a difference” (Siegel, 1997), “a critical perspective that focuses on personal and social injustices” (Sowards & Renegar, p. 537).

“Bodies need stories,” writes Arthur Frank in The Wounded Storyteller. The practitioner of the objective clinical sciences has had little or no training in the aspects of meaning-making that are culturally constructed and rooted in the symbolic. We do stop short of calling pregnancy loss an “illness” AND the narratives of pregnancy loss occur as the self encounters a profound sense of loss with and through the body. Pregnancy loss is a disorder – a disruption in an imagined life story.

I’m now going to highlight a few of the recurring themes from the chapters in this book including social support, the difference between the medical diagnosis of miscarriage and the physical expulsion of miscarriage, pregnancy loss in popular culture, and silence. Miscarriage and infertility are examples of what is referred to a “disenfranchised grief”...

…grief that people experience when they incur a loss that is not openly acknowledged, publicly mourned, or socially supported (Doka, 1989, p. 4). Studies have determined that caring for women after a miscarriage is one of the most neglected training areas for health care providers (Corbet-Owen & Kruger, 2001; Modiba, 2008). Rita Charon is a physician and the director of the narrative medicine program at Columbia University…

…and her definition of narrative competence is the “ability to acknowledge, interpret, and act on the stories and plights of others.” Charon calls on clinicians to humanize health care by recognizing that information from patients arrives in narrative form. In her chapter, Jennifer Bute writes, “If just one person [ at that hospital] had stopped to acknowledge the enormity of our loss, I am certain that the lingering discontent I’ve felt in [in the years since] would not exist.

Miscarriage and pregnancy loss affects families in dynamic ways. A miscarriage and/or infertility always occurs in a context. As we organized and selected contributions for this book we knew we wanted diverse perspectives and experiences. Included in this collection are stories of prolonged attempts at IVF, couples experiencing relational uncertainty in the midst of pregnancy loss, as well as perspectives of health care providers.

There are always two miscarriages – there is the physical act of miscarrying experienced only by one member of the dyad regardless of whether the couple is heterosexual or lesbian. And the emotional miscarriage: the disruption, the disordering. The physical miscarriage, unlike most representatives of miscarriage in popular culture, typically includes a loss of blood and significant pain. In her chapter, Desiree Rowe writes, “The blood lasted for days. For days I would not allow my partner to go into the bathroom and turn on the light. I didn’t want to see the blood until it was over. I wanted to clean it up only once.”

One of the most anticlimactic aspects of publishing a book is indexing. While I acknowledge the tendency to pay the publisher or a freelancer to accomplish this task, I actually enjoy it. “Emotions,” however, was the single most challenging entry in our index. Along with expression of emotions, emotions as a meaning-making mechanism, and suppression of emotions, also listed are anger, anguish, desperation, doubt, embarrassment, fear, frustration, grief, guilt, happiness, hope, joy, relief, sadness, and shame.

In her chapter, “Dying Inside of Me,” Jen Hawkins writes, “Pain released when I read that grief levels for women experiencing ectopic pregnancy were similar to those of women who had later miscarriages and/or stillbirth. This information gave me permission to mourn. Pain locked up within the depths of me suddenly was freed. And I cried and cried. I understood and felt significance for my losses. My heart was heavy.”

Through the ultrasound, it is the medical sonographer who often diagnoses what is known as “fetal demise” but she is not permitted to share this bad news with a patient. Despite being more expert in the employment of sonography devices and the resulting diagnoses, the sonographer is obligated by professional agreement to allow the physician to break that news.

And when there is no physician available, mothers can be sent home with an ambiguous message. To wait. For who knows how long. Regarding time, I refer to the words of Michaela Meyer in her chapter “On the identity politics of pregnancy” – Meyer writes, “My miscarriage narrative is past, present, and future simultaneously. How that experience is communicated – whether it be met with silence, with grief, with activism, with community engagement, with relational formation and dissolution – ultimately impacts our individual and cultural understandings of time and human experience.

This book is a collection of narratives but it is also a work of activism and for activists. In his “Communication as Culture,” James Carey provides the following definition for communication. “Communication is a symbolic process whereby reality is produced, maintained, repaired, and transformed.” Through the work of our contributors and their narratives, Rachel and I endeavor to provide a template for change – for repair – at the relational, institutional, and culture levels regarding miscarriage and infertility.