Abstract
Despite almost one-third of women suffering from the loss of a baby through miscarriage, stillbirth, or infant loss, it is surprising how little research examines how such loss affects the identity and stigmas experienced by these individuals. Through in-depth, semi-structured interviews with bereaved mothers (in particular, mothers who lost a baby during pregnancy or within one year after birth), this research sheds light on the bereaved mother’s experiences after loss. Specifically, this research applies the identity-threat model of stigma to showcase the process of stigmatized loss. Based on our findings, we also introduce the process model of stigmatized loss that can apply to all types of stigmatized loss. Key themes emerged as we explored stigmatized loss discourses. These include situational cues that trigger stigma, identity-based responses that aim to preserve both a baby’s and mother’s identity, as well as nonvolitional and volitional responses that help restore control and reconstruct identity. Additionally, other themes revolve around positive and negative outcomes stemming from avoiding stigmatized identity activation and identification of triggers that initiate a recursive process through stigmatized baby loss. Importantly, stigma can be perceived as both an identity threat (negative) and an identity confirmation (positive). Findings inform theory and practice alike.
Keywords
Introduction
Almost one in three women suffer the devastating loss of a baby. More specifically, roughly one in four pregnancies end in miscarriage, which occurs in the first half of pregnancy (MacDorman & Gregory, 2015). In addition, one in 160 pregnancies end in loss through stillbirth, which occurs in the second half of pregnancy (CDC, 2021), and for every 1000 live births in the United States, there are 5.7 deaths of infants aged one and younger (CDC, 2020). Collectively, we use the term “baby loss” throughout this paper to refer to women who have experienced miscarriage, stillbirth, or infant loss. We also acknowledge that some women may view their experience as the loss of a pregnancy, the loss of a fetus, the loss of a child, or a combination of these, and respecting a bereaved mother’s vernacular is important (Frøen et al., 2011). The term “baby loss” was the most common term used by our participants to refer to their loss, so we utilize that term to best capture the language of those with the lived experience of miscarriage, stillbirth, and infant loss.
Baby loss represents an incredible amount of intense grief and loss that is often not discussed in physicians’ offices, in public and private spaces, and in society in general (Avelin et al., 2013). This silenced attitude toward baby loss is in part due to a negative stigma associated with it (Pollock et al., 2020a). However, prior research lacks a more comprehensive understanding of the experience of bereaved parents after loss, particularly as to the factors that influence the development, maintenance, perpetuation, and feelings of stigma.
Research Questions
To fill this gap and extend prior research on baby loss, stigma, and identity, we conduct in-depth interviews that are guided by three research questions: (1) what contributes to the stigma associated with baby loss? (2) what factors perpetuate this stigma? and (3) what can be done to support those suffering from baby loss? In answering these three questions, we build and extend the identity-threat model of stigma (Major & O'Brien, 2005) with the realization that a mother and baby’s identity are at the core of the experience of stigma after baby loss.
Research Contributions
In examining this stigma, we extend prior research on stigmatized individuals (e.g., Etchegary, 2007; Jiménez et al., 2011) and provide important theoretical contributions. First, we depict the stigmatization process of a disadvantaged group (bereaved mothers) in an important yet understudied circumstance (baby loss). We collect data from bereaved mothers and synthesize their experiences to construct the process model of stigmatized loss, thereby contributing directly to identity and stigma research. Second, by elaborating on the loss experience and discussing the grief that is typically not openly acknowledged or publicly recognized, our research exemplifies disenfranchised grief (Doka, 1999). In doing so, our research also adds to the literature that discusses losses in life and relevant societal expectations (Malacrida, 1999). Lastly, our findings show that stigma can work as both an identity threat (negative) and an identity confirmation (positive) for the stigmatized, which has been rarely discussed in the stigma literature. Although stigmatization has negative associations, individuals hesitate to let go of their associated stigma as it becomes integral to their identity. To a bereaved mother, baby loss stigma is not just a deviation from being “normal” but also a connection to their deceased baby who they cherish. Thus, findings from this research enhance our understanding of stigma and its impact on personal and social identity.
Stigmatized Baby Loss
Baby loss is a tragic, life-changing situation. The current research examines this loss through the discourse of stigmatized loss. We use the term stigmatized loss because other forms of loss (e.g., the loss of a parent or even the loss of a spouse) is expected and within the natural course of life, while the loss of a baby is not (Albuquerque et al., 2019). Additionally, baby loss is compounded by the fact that a mother is often thought to be somehow at blame for the loss (Abboud & Liamputtong, 2002; Cacciatore, 2013; Gold et al., 2018).
Stigma refers to a situation where “elements of labeling, stereotyping, separation, status loss, and discrimination co-occur in a power situation” (Link & Phelan, 2001, p. 367). The study of stigma in social science research covers an array of physical, mental, psychological, and behavioral circumstances such as disability, gender, race, sexual orientation, health conditions, and life choices (Major & O’Brien, 2005; Wigginton & Setchell, 2016). Stigma has profound and long-lasting effects on individuals’ life outcomes, and even concealable stigma identities (e.g., diabetes and depression) can lead to large mental and physical distress (Burden et al., 2016; Flach et al., 2022). Mothers who experienced baby loss are generally perceived and labeled by “others” as being incapable of keeping their unborn or infant babies alive and ultimately responsible for their baby’s death (Pollock et al., 2020b; Wesselmann & Parris, 2022). Shame prevents bereaved mothers from sharing their grief with the social world, resulting in discriminating social exclusion in the form of avoidance and silencing (Wesselmann et al., 2023). Bereavement stigma could arise from interaction with professionals, family, friends, work colleagues, and even casual acquaintances (Brierley-Jones et al., 2014; Gilbert et al., 2023).
While each person’s grief is understood as unique (D’Antonio, 2011), we seek to generate and synthesize common themes and trends associated with the processes individuals go through post-loss that may inform how to best support bereaved mothers, better understand their experiences, and identify key stigma-related constructs that best reflect this process. We suggest that baby loss stigma is unique to bereaved mothers because the stigma itself may serve as a connection to their beloved baby. The stigma both threatens and confirms their identity as a mother. Therefore, the loss stigma experienced by bereaved mothers may serve as both an identity threat from others/society and an identity confirmation for a bereaved mother and their baby(ies). For example, to bereaved mothers, baby loss reminders such as a social media post, friends’ baby shower party, or their baby’s toys and clothes may make them feel incomplete, disconnected, and in deviation from being “normal” as a mom, thus forming an identity threat. At the same time, the baby-related things and activities could also remind them of their deceased baby, connect them to the limited time and memories shared with the baby, and cherish being a mother of their child, thus forming an identity confirmation.
In conceptualizing and unveiling the mechanisms of stigmatization, we build on the identity-threat model of stigma to explain the bereaved mother’s stigmatized experiences. We also add to this model the important identity confirmation element that stigma serves, thereby revealing the process model of stigmatized loss. The identity-threat model describes the antecedents and consequences of a stigmatized experience. It posits that collective representations, situational cues, and personal characteristics help form appraisals of stigma-relevant stressors. When stressors are perceived as potentially harmful to their social identity, individuals experience identity threat. Responses to identity threat can be nonvolitional, which do not serve to regulate stressful experiences, or volitional, which are the conscious efforts to regulate or cope with the situation. The stigmatized experience will make an impact on self-esteem, achievement, and health as outcomes. See Figure 1 for Major and O’Brien’s (2005) identity-threat model of stigma overlaid with how each of their constructs could relate to baby loss. To further examine and explore individuals’ identity-based processes experienced after stigmatized loss, we collect and analyze qualitative data from bereaved mothers. Identity-threat model of stigma in relation to bereaved mothers.
Method
In-depth, semi-structured interviews were conducted with mothers who had lost at least one baby, either in the womb or within one year after birth. We refer to these mothers as bereaved mothers while acknowledging that this term can refer to mothers who have lost a child at any age.
Participants and Sampling
Participants were recruited through resource networks (specifically for baby loss) using purposive and snowball sampling; both techniques of which are commonly used in other very personal interview-based research (e.g., Cacciatore, 2010). We used a purposive sample to obtain a roughly equal number of participants in each of the three main types of losses (miscarriage, stillbirth, and infant loss) as well as geographic variation within these groups. Snowball sampling was used to find participants to fit into these purposive categories, and some participants were not selected for our research when a particular type of loss or geographic region became over-represented.
All baby loss organizations that appeared on the first several pages of Google search results for “baby loss support organization” (or related terminology like miscarriage, stillbirth, infant loss, or SIDS support organization) were contacted. Requests for participants were sent via email and were accompanied by a recruitment message listing the objectives of our research, what would be involved for a participant, and contact information to learn more. In total, interviews were conducted with 30 bereaved mothers, which is how many interviews it took to reach the point of theoretical saturation. Interview participants included 10 bereaved mothers who had experienced one or more miscarriages, 12 who had experienced one or more stillbirths, and eight who had experienced infant loss. All participants were biological mothers.
Participant Characteristics.
aLoss ages followed by the word “gestation” are losses before birth (i.e., in utero), whereas all other loss ages refer to ages after birth.
Note that in our participant characteristics table, we provided pseudonyms for both the mother and baby(ies) who died. We found this to be an important part of the research process in allowing the deceased babies to be recognized by name, which helps to address a very common finding from our research—bereaved mothers and their babies need to be acknowledged. Each informant was asked to select their own pseudonym as well as that of their baby(ies), which for many informants was appreciated because it allowed them to be active participants in the research process (Allen & Wiles, 2016). One informant in particular said: Lovely to hear from you, especially today which is Rory’s first birthday. I miss him terribly, but I’m spending the day “with” him, thinking about him, and so far I’m making it through okay … I really enjoyed thinking about this, thank you. —Maggie, mother of Rory (17 weeks old)
Ethical Research Practices
Our research was approved by the IRB ethics committee at a large public university (University of Wyoming and Protocol #20210507EM03035). All participants provided written informed consent before participation in this study. As part of the consent, participants were provided with a list of mental health resources, should they need it.
We exercised caution and sensitivity in our recruitment materials and exchanges with participants, similar to other research on highly sensitive topics (e.g., Botti et al., 2009). Before starting the interview, participants were informed about the anonymity of their data and told that there would be no judgment regarding their actions, emotions, or choices post baby loss. Informants were also told that they could stop the interview at any time or pause if need be for emotional or other reasons (Botti et al., 2009). While no one chose to stop the interview completely, most did pause for some time while experiencing overwhelming emotions. In exchange for completing the interview, participants were offered a small box of baby loss memory items shipped to their home, which all but one of the participants chose to receive.
Data Collection
A semi-structured interview guide was used throughout each interview (Mahat-Shamir et al., 2021); see the Appendix for questions in this interview guide. The interview guide was developed based on the three initial research questions aiming to understand what contributes to, what perpetuates, and what helps alleviate stigmatized baby loss. We ensured that there were questions that reflected components of the identity-threat model of stigma (Major & O’Brien, 2005) to be able to offer theoretical insight from our interviews. Additionally, we designed questions to meet the needs of bereaved mothers by easing into loss questions. All interviews were conducted by the member of our research team that had experienced multiple forms of baby loss (infant loss and miscarriage). This allowed for important rapport building with participants (Arsel, 2017) based on a commonly understood vocabulary and enabled empathy to be expressed to help make informants feel comfortable sharing on the very sensitive topic. To reduce potential bias and emotional substitution and acknowledge the importance of researcher reflexivity in this study, our unique research team consisted of members who had lost a baby, who have living children but had not experienced loss, as well as compassionate colleagues who have never had a child before. Constructing a research team composed of members with and without personal experience on the topic has been deemed beneficial practice in prior research (Patterson et al., 1995).
Only the member of the research team who had experienced baby loss engaged in all aspects of the research process including interviewing all participants. Other members of the research team (i.e., those not having experienced baby loss) actively engaged in all non-interview research tasks (e.g., listening to interviews, coding transcripts, and analyzing data) and occasionally attended an initial interview when agreed to by the participant. Some informants indicated that their deceased baby was so sacred to them that they would not share their baby with just anyone because it would detract from this sacredness, suggesting that personal experience with baby loss from at least one member of the research team is essential for an accurate understanding of the topic. Throughout the data collection and analysis process, the interviewing researcher acknowledged that as a bereaved mother herself, her own child loss experiences would contribute to her ability to connect with certain experiences described by interviewees. The other members of the research team acknowledged that their lack of experience with child loss may make it more difficult to relate to participants’ experiences.
To assess each participant’s experience with baby loss, we began with grand tour questions (Mahat-Shamir et al., 2021) and then proceeded with more specific probing questions to uncover additional details about their experiences. Initial questions asked each bereaved mother to talk about their baby, and then we proceeded to more specific questions about their experiences post-loss. After completion of the first semi-structured interview, questions underwent a reflexive process where some were adapted to better address our overarching research questions and theory building and enhance clarity (Arsel, 2017), which followed the grounded theory processes of data collection and analysis simultaneously to inform each subsequent interview (Strauss & Corbin, 1990). Throughout the interviews, reoccurring themes were noted, and interviews continued until theoretical saturation was reached. Saturation occurred when interviews provided repetitive content with no new themes emerging, which was when our total sample size was reached. After receiving consent from the participants, all interviews were recorded either through an audio-recording device for in-person or phone interviews or using Zoom for virtual interviews. Interviews were then transcribed verbatim by an external company, producing 519 pages of data. The interviews ranged in length from 44 to 106 minutes (M = 65).
Data Analysis
We collected and analyzed the interviews using a grounded theory approach (Charmaz & Thornberg, 2021; Strauss & Corbin, 1990). This involved data analysis during the data collection process to direct each subsequent interview, supplemented by memos to keep track of data analysis procedures. Note that our research departs from standard grounded theory practice in one main way: to connect our bereavement-specific findings to prior research examining identity threat. Specifically, we began our research using the identity-threat model of stigma as a theory to extend from, whereas grounded theory research usually begins with no pre-established theory (Strauss & Corbin, 1990). We integrated the pre-existing theory into our data collection and analysis through targeted questions, such as asking, “As you have gone about your daily life after your loss, have you noticed things that have felt hurtful to you? If yes, can you provide an example?” as a means for understanding any situational cue component that is present in the identity-threat model of stigma as also potentially being part of our process model of stigmatized loss. Data from the first several interviews revealed that our understanding of situational cues was challenged; the identity-threat model of stigma references negative triggers, but our interview data revealed situations of positive situational cues that kept the memory of a deceased baby alive. Thus, in subsequent interviews, we adapted the wording of the question to ask, “As you have gone about your daily life after loss, have you noticed things that have reminded you of your baby or of your loss? If so, can you provide an example?” Adaptations in our questioning enabled us to more fully capture our participants’ stigmatized loss experiences.
Members of our research team individually read each interview line by line, made notes, and reflected on topics with repeated prevalence to identify inductive, data-driven themes (i.e., intra-textual analysis) (Strauss & Corbin, 1990). As part of the data analysis process, interviews were read to identify themes across interviews (i.e., inter-textual analysis), all using an open coding process. For example, the repeated mention of topics by participants led to the identification of themes included in our new process model of stigmatized loss including “situational cues” with comments about items triggering bereavement memories and stigma, “time” with comments about the shifting and softening of personalized bereavement responses to stigma, and “emotions” with comments that explained bereaved individuals’ stigmatized identity-threat response. Before these broad themes were developed, individual repetitive topics were noted. For example, the broad emotions theme was initially coded as individual emotions that emerged in the data including anxiety (20 instances), confusion (11 instances), depression (31 instances), duality (11 instances), fear (12 instances), guilt/regret (37 instances), jealousy (9 instances), loneliness (21 instances), not caring (14 instances), numbness (4 instances), various positive emotions (3 instances), and shock (14 instances).
Afterward, we compared notes among our research team, questioned others’ interpretations, and developed new interpretations and insights. This was an iterative, hermeneutical process going through numerous rounds of iterations and asking for clarification or collecting additional data when needed (Flick, 2013). We discussed key themes among our research team until agreement was reached and consulted the literature during the process to assist in identifying relationships between themes and theory. We also examined potential theme differences between subgroups of participants. We continued this process until we reached sufficient agreement and level of abstraction to discern theoretical insight (Albuquerque et al., 2019; Gioia et al., 2013), which included identifying connections and processes among themes using axial coding and then selective coding processes (Strauss & Corbin, 1990). We also conducted member checks with many of our participants, with several of them reading the full paper to ensure voices were accurately captured. No discrepancies between our writing and the research participants were identified, although points to consider for addition to the paper were provided (e.g., in indicating that all participants were biological mothers).
Findings
First, we discuss collective representations, situational cues, and personal characteristics. These serve as antecedents to the core theme of stigmatized identity activation. We then extend the identity-threat model of stigma by introducing the themes of emotions and time that play critical roles in how stigmatized identity activation influences individuals’ volitional and nonvolitional responses. From here, we discuss outcome themes (both positive and negative) before extending the identity-threat model of stigma again to show that there is a process of generating a “new normal.” However, our findings indicate a clear theme that this new normal is not perpetually stable, and, instead, triggers initiate a recursive process that restarts the process model of stigmatized loss. Figure 2 summarizes these themes in this model of stigmatized loss and highlights how our findings build on and extend the prior identity-threat model of stigma. The process model of stigmatized loss.
Antecedents
Collective Representations
These representations stem from societal norms about how individuals should respond to baby loss, thereby serving as the foundation for the process model of stigmatized loss. The most commonly understood norm relates to miscarriage in particular, in which there is a 12-week wait before a pregnancy should be publicly shared. I don’t like that time mark. I feel like that’s just annoying … I feel like culturally, you feel like after 12 weeks, it’s fine. But then obviously there’s a ton of women that after 12 weeks, it hasn’t been fine … I did that two times, and it didn’t matter. So, I was like, whatever, like after the first loss, I was like, we’re just telling people the second I find out, and we’re gonna be pregnant for as long as we’re pregnant and just enjoy being. —Rayna, mother of Elias (13 weeks gestation) and Zoe (17 weeks gestation)
Collective representations after a loss also contribute to the stigmatization of baby loss. There is a broad stigma surrounding grief in general to avoid grief topics, thereby not preparing people to deal with grief personally or to support family and friends through the process. As Marie, mother of Kristine (12 weeks old) says, “It’s so hush hush, and even businesses kind of make it that way where they’re not going to have things openly displayed where lots of people can see that talk about death, any kind of death.”
Baby loss, more specifically, is even more stigmatized because of specific societal norms to avoid and remain silent on the topic of baby loss as well as a large societal taboo surrounding the topic of loss. Additionally, bereaved mothers want others to know about their baby but feel that talking about their baby is not allowed in society or they avoid it to evade insensitive comments/questions. Amber, mother of Meghan (7 weeks gestation) and Milam (8 weeks gestation), described the situation like this: “There’s [the loss of babies is] still a big stigma, that it’s supposed to be something that you deal with very privately.”
Societal reactions toward bereaved mothers including hurtful comments, avoiding contact, naive ignorance, and not acknowledging their loss or baby also perpetuate the stigma and devalue these mothers. These reactions are not just from society at large but also infiltrate even the most personal of relationships of bereaved mothers, such as reactions from their own mothers. I think my friends, they kind of didn’t know what to do, so they just stayed away … My mom didn’t want it mentioned. She still to this day. I mean, she refused to participate in Kristine’s birthday this year. —Marie, mother of Kristine (12 weeks old)
Situational Cues
These cues represent both negative and positive situations that trigger entrance into an individual’s process into stigmatized identity activation. Negative situational cues include exposure to messages in retail and advertising settings that remind bereaved mothers of their loss and how they are not included in the traditional depiction of a family, thereby serving as an antecedent to stigmatized identity activation. All of the sweet little Pampers commercials and stuff where it’s like, your brand new baby, and they’re showing them coming into the world, and they’re holding them, and you’re like, it’s a beautiful moment, but when you’re still in that really raw grief stage, those things can be overbearing. —Olivia, mother of December (10 weeks gestation)
Another common negative cue that emerged from the interviews with bereaved mothers was frustration with linguistics. This frustration often stemmed from the fact that a miscarriage can be termed a “missed abortion,” people in general do not understand the difference in types of baby loss (miscarriage vs. stillbirth vs. infant loss), and the identity of babies after loss is deidentified, thereby devaluing the baby. When I had the D&C [medical procedure after a miscarriage], the medical term is abortion, and I had to sign a lot of papers agreeing to have the abortion of my child. So that really bugged me bad, bad, bad. And I almost didn’t sign it … And the nurse told me, honey, like it’s just the medical term. This doesn’t mean you’re killing your child. But I will tell you, that was the worst feeling. —Jane, mother of Samuel (12 weeks gestation), Hannah (8 weeks gestation), and Judah (8 weeks gestation)
Situational cues can also be positive. In the context of baby loss, these cues are reminders to a bereaved mother of their deceased baby. As Ani, mother of Angel (32 weeks gestation) says, “I think there are good triggers, and so he [someone from her work] always brings up my baby in a good way.” These good triggers can be things like butterflies or other things in nature bringing about a spiritual connection or, more commonly, things people say or do. While these can make a bereaved mother sad, they appreciate the reminder because it reflects that their baby is remembered, matters, lived, and is still theirs. This serves as a large opportunity for organizations to create positive situational cues to help support and solidify a bereaved mother and her baby’s identity. When I got my tattoo, my mom told my husband, I wish she wouldn’t have gotten that tattoo. It’s just going to make her sad every day, and it’s like absolute opposite of that. Me not remembering my child makes me sad. Me having a constant reminder that my child is with me makes me happy. —Rose, mother of Heartrock (24 weeks gestation)
Personal Characteristics
Features of a bereaved mother’s background influence the likelihood that they will experience stigmatized identity activation, inclusive of any history with trauma and the development of coping skills that assist in dealing with baby loss. Additionally, a bereaved mother’s physical sensations of continuing to feel pregnant after loss impacted their experiences post-loss including dealing with breastmilk coming in, postpartum hormones, physical pain, and weight gain/a larger body. Maggie, mother of Rory (17 weeks old), explains it like this: “I had to deal with drying up my breast milk when he died … That was probably the worst thing about those early days was trying to dry that up. That was excruciatingly painful emotionally.” Similarly, Ani, mother of Angel (32 weeks gestation) states that “Way earlier than I probably should have, I was already squeezing myself into regular clothing because I just didn’t want to be in the maternity clothes anymore.” While bodily changes may seem to be separate from the emotional experiences of loss and stigmatization, they are intimately intertwined. Bereaved mothers suffer duplicate pain of grief and bodily changes while trying to distance themselves from their pregnant bodies. This distancing is particularly painful and stigmatized when bereaved mothers feel judged by others that their body shape has nothing to do with a baby. You don’t recognize yourself in the mirror … It doesn’t register because I was especially, I was very athletic and very active and always just more fit than I realized … I had to get rid of all my clothes. I’m like, I’ll never be that petite again. And I had a c-section this time … Everybody always says they’re not that bad, and I just beg to differ. I think they’re always hard. The scar is hard. The image, like all of it, is very hard. —Elizabeth, mother of Abigail (39 weeks gestation)
Stigmatized Identity Activation
This is the first main stage of the process model of stigmatized loss where bereaved mothers navigate between two identities: (1) their loss identity and (2) their mother identity. While both identities are relevant, the mother identity was most prominently influential in the experiences of bereaved mothers. Identity threat questions their mother identity or further perpetuates their loss identity, which then leads to subsequent volitional and nonvolitional responses. As many bereaved mothers mentioned, they felt that their mother identity was often threatened because others did not acknowledge them as real mothers. I feel like a mother, but I don’t always think the world sees me as a mother. And so, part of me feels like I have to prove that …. Before I was a woman, a wife, a worker, whatever it may be, and now it feels like I feel one thing, but I have to prove it to everyone else. And so, it’s like an internal conflict. —Rose, mother of Heartrock (24 weeks gestation)
Simple actions from organizations can unknowingly threaten the mother identity as well, which the participants particularly wanted to make known. These actions oftentimes revolve around a deceased baby’s name no longer being said/written or bereaved mothers not being included in Mother’s Day communications, forcing internal reconciling as to whether a bereaved mother should be considered a mother to their deceased baby. Consent forms in particular are super triggering because it’s like, how many children do you have? And then it’s their ages, and so then you have to put one but zero, deceased, like all in a 10-second time span, and your brain just wants to explode. —Laurel, mother of Francesca (13 days old)
Time
For most bereaved mothers, time naturally softened the intensity of the pain of loss and provided coping skills to deal with stigmatized loss. Partnered together, the softening of pain and added coping skills were often termed a “shift” in perspective. However, nearly all of our participants emphasized that the pain and triggers never fully go away, and decreased support over time is also challenging. Felice, mother of Dylan (34 weeks gestation), emphasizes this when saying that “I think child loss is one rare example that I don’t think time heals. I don’t consider myself healed … The pain just softened, the edges aren’t as sharp.”
Emotions
The emotions experienced by bereaved mothers resulting from baby loss and stigmatized identity activation encompassed a wide range of feelings, which can be categorized into six broad categories: (1) joy (duality, positivity), (2) surprise (confusion, shock), (3) anger (jealousy, anger), (4) sadness (loneliness, guilt/regret, extreme sadness), (5) fear (anxiety, fear), and (6) apathy (not caring, numbness). For the sake of space, we do not further discuss these emotions so as to focus on the more novel and important components of the process model of stigmatized loss.
Nonvolitional and Volitional Responses
The emotions of bereaved mothers led to volitional and nonvolitional responses as a means of coping with identity stigmatization. We categorize these into the nonvolitional response of primal/maternal instincts and volitional responses of fighting back, retreating, identity preservation, and pursuing healing. The volitional responses in particular stem around the desire to restore a sense of control in life.
Nonvolitional Response: Primal/Maternal Instincts
This response is biological in nature, occurring outside of a bereaved mother’s volition. Bereaved mothers indicated that these responses occur because of instinctual factors of trying to protect and hold their baby, even after the baby’s death. As Maggie, mother of Rory (17 weeks old), explains, “It’s [anything related to baby loss] much more likely to send me into fight or flight because it’s going to trigger that human maternal batshit crazy need to save my baby. I can’t save it obviously.” These responses were experienced as more intense and emotional than other types of loss that bereaved mothers had experienced in the past, such as the loss of a grandparent, parent, or even a sibling. Bereaved mothers explained these feelings as primal in nature where it was almost as if their mind was no longer in control and their body took over. I had so many nights where I would just literally scream, where’s my baby? Where’s my baby? And I don’t even really, it was kind of an out of body experience, but it was literally my body crying for my baby, like, where is my baby? Like, I’m supposed to have my baby. Where is she? —Elizabeth, mother of Abigail (39 weeks gestation)
Volitional Response: Fighting Back
This response involves fighting against stigmatized identity threat with frustration at the lack of resources for baby loss or the lack of messaging that acknowledges baby loss (e.g., with messaging not incorporating bereaved parents into family advertisements), partnered with the continued stigmatization of such loss. Additionally, bereaved mothers fight the stigma by talking about baby loss and their deceased babies as well as trying to make the topic of baby loss a non-stigmatized, generally acceptable topic of normal conversation. Nobody’s talking about that [baby loss]. Why is nobody talking about that? … I think it’s why we are so far behind on it, I guess. And I know, like one thing at a time, probably. But it’s one thing that frustrates me because I think it affects such a large amount of [the] population. And I see these other countries that are trying to start addressing these things. But I’m like, we don’t even have things in this state that support even the very basics of the process. —Erin, mother of Autumn (8 weeks gestation)
Volitional Response: Retreating
This response tries to avoid further hurt from stigmatization. It includes things like becoming more socially isolated to be safer and not potentially get hurt by others as well as avoiding dealing with people and the stigmatized nature of baby loss. Similarly, it includes avoidance of reality by throwing away everything associated with one’s baby, trying to pretend as if the baby never existed, ignoring holidays, and not speaking about baby loss or their baby in words. As part of retreating, there is the awareness that a bereaved mother’s story of their baby cannot be shared with everyone which is kept private so as to not have to relive the hurt, to not offend or harm people, and to follow the cultural stigma of baby loss. Additionally, these retreating responses involve changing media habits to avoid targeted baby, maternity, and family messages including purchasing streaming services without commercials and changing social media usage. I also really retreated socially. Which is just really unlike me … I just ended up having to delete my Facebook. And I feel just very removed from my friends. And just the world that I used to be part of it feels lonely, but also safe. —Claudia, mother of Beanie (8 weeks gestation) The biggest reason why I left Facebook, honestly, was because all my ads were curated to that, and it was either I spend more time on there searching other things to replace it or just get rid of it. And I feel great. I don’t miss it. —Claudia, mother of Beanie (8 weeks gestation)
Volitional Response: Identity Preservation
Many bereaved mothers also mentioned tactics that they take to preserve their motherhood identity as well as the identity of their baby, especially in response to stigmatized identity threat. This includes physical acts of still mothering their deceased baby as well as comments about still mothering their baby on earth or in heaven. We’re going on a vacation next week and debating whether or not to actually bring his ashes with me. So TBD on that, but I have decided I’m going to pack him a bag. Even though he’s not coming. Because I had picked out a bathing suit for this trip when I was pregnant with him. I bought a bunch of stuff because we knew we were going on this vacation … and I think it’ll feel sad and silly and whatever. But I think just the idea of it makes me feel like, I don’t know, like I’m bringing him with me even if I am not bringing him. —Maggie, mother of Rory (17 weeks old)
Almost all bereaved mothers also mentioned tangible objects they had that helped to keep their baby’s memories alive including personalized jewelry, ornaments, their baby’s ashes, pictures of their baby in ultrasounds or after birth, tattoos with their baby’s name, stuffed/weighted animals, a physical space/bedroom devoted to their baby, gravestone to visit, planted tree in their honor, visuals of footprints or handprints, memory garden, memory box, lantern, lit candles in their honor, or other personalized figurines/items with their baby’s name. I almost always am wearing something that reminds me of Grace. I actually got my necklace and ring on with hearts and elephants. Those are the two things that really make me think of Grace. So whether that’s in jewelry, or I might have a mild obsession with elephants now because … [elephants] make me think of her. I just bought another one this week. But it just keeps it fresh. And I then use them, whether decoration or this one, I’ll be able to use for some of the [name of charity she set up in her baby’s honor] things. But keeping that, whether it’s jewelry or keeping her clothes and just feeling that connection, that I know that I’m wearing or having something, reminds me of her. —Anne, mother of Grace (10 weeks old)
Volitional Response: Pursuing Healing
Some bereaved mothers turned stigma and loss into motivation to not hide amidst the stigma but instead proactively seek help. This includes hiring professionals to perform integrative therapy (e.g., acupuncture and counseling), talking about their baby in support groups or counseling, following social media pages about loss, practicing self-care, or engaging with emotion-validating resources. These responses are evidenced by a statement by Morgan, mother of Henry (36 weeks gestation): “I talk about Henry because that’s how I cope with my hurt. Talking about him brings me comfort. It brings me peace. It lessens the blow of knowing he’s not here.”
Outcomes
The last main stage in the process model of stigmatized loss, before a new normal is developed, is the resulting outcomes associated with an individual’s response to stigma and loss. These outcomes can be both positive and negative, with both incorporating outcomes related to one’s relationships (particularly with the baby’s father), future babies, and faith.
Positive Outcomes
Positive relationship outcomes with a baby’s father occur as both parents move through the grief process and support one another, including leaning on each other, staying strong when the other is weak, and physically helping each other. New, deep friendships also emerge for bereaved mothers with other bereaved mothers. I’m in a grief support group, and one of the ladies I reached out to, me and her text often because there are times where I needed to talk to her … We can lean on each other … When I tell her that I feel like I’m drowning underwater, she understands. She doesn’t look at me or she doesn’t get scared. —Tee, mother of Ellie (20 weeks gestation)
Bereaved mothers also expressed how going through loss gave them a greater appreciation for any future babies, although notably never fully taking away the pain of losing their baby or making them forget their deceased baby. A “rainbow baby,” as bereaved mothers called their living baby after loss, helped these mothers in processing their hurts. I really have healed a lot and have been so focused on the gift that [rainbow baby] is that I don’t often sit in those emotions of what could have been or what would have been … I will say those thoughts are there, but they don’t consume. —Amber, mother of Meghan (7 weeks gestation) and Milam (8 weeks gestation)
Positive outcomes for bereaved mothers were also seen in a shifted perspective on life. Their identity often changed for the positive with more compassion, empathy, and patience. Bereaved mothers also shifted their priorities in life, advocated for themselves, were more present in the moment, and were more family-oriented. I think in some ways, it’s forced me into a place of addressing things that I probably have buried for a number of years … I think it probably also changed a lot of my perspective … It allowed me to be empathetic on a totally different level. And then I also think it showed me a side, like a compassionate side to myself. —Erin, mother of Autumn (8 weeks gestation)
Another positive outcome mentioned by many bereaved mothers was renewed faith, although not always initially. These mothers mentioned a greater appreciation and longing for heaven or other spiritual realm where they believed that their baby was, helping them to feel a continued connection to their deceased baby and not feel as if their baby was truly gone forever. It took a long time, three years … Working through it and recognizing how God has played a part in this story and Grace’s story and how He has brought good and her death was not good, but He is good, and He has brought good out of our story … [and] also giving hope for heaven and hope to see [my baby again]. —Anne, mother of Grace (10 weeks old)
Negative Outcomes
Like positive outcomes, there can be negative outcomes related to a bereaved mother’s relationships, particularly with the bereaved father, leading some relationships to end in separation or divorce. I think I’m kind of about to go into, like, what I’m going to call like a hibernation sort of. I’m going through a whole life uproot because my husband and I are separating, and I’m going to be like literally, you know, letting go of everything, which is my identity. —Laurel, mother of Francesca (13 days old)
These negative relationships also transfer to relationships and feelings toward one’s subsequent babies. This includes having extreme anxiety toward additional loss and hesitation with becoming too connected to a new baby in case they die as well. I was a nervous wreck during my pregnancy with my daughter [her subsequent child after loss]. I mean, I just, it was awful … I was kind of paranoid about it … I didn’t want a baby shower. I didn’t want [to go] shopping. I didn’t look at [baby things] if we went, if I went to the store. I never went to the baby section. Anything like that. —Stacey, mother of Daniel (28 weeks gestation) and Dylan (1 day old)
There were also negative outcomes for the faith of bereaved mothers. Some were confused as to why God did not save their babies, not necessarily characterized by anger at God but rather just a state of confusion and questioning belief in God and everything in life. Others felt faith was not helpful. This group of bereaved mothers turned away from faith as they felt that they did not deserve to lose a baby. Stacey, mother of Daniel (28 weeks gestation) and Dylan (1 day old), is one example of this as she says, “I became an atheist … and even when I was saying I was an atheist, I was still kind of praying, more yelling praying, why, you know, why, why, but I didn’t want to be religious at all.”
Unique negative outcomes also incorporated internal feelings of a sense of injustice in the world and reoccurring thoughts about secondary losses. Injustice feelings occurred as bereaved mothers felt that they should still have their baby. These feelings were especially prominent when others complained about their kids because a bereaved mother would give anything to be in that situation. When exposed to messages featuring families with kids, a bereaved mother often wished this represented her full family as well. It’s just your baby that you don’t get to have, but most other mothers around have no problem having babies. Even the ones that are doing drugs or the ones that don’t want their babies or, you know, just terrible other situations. They’re able to still have their baby. Why am I not when I’m trying to do everything right, and we wanted these babies, you know? —Kenna, mother of Jay and James (twins at 22 weeks gestation)
New Normal
At the end of the straight path on the process model of stigmatized loss is the development of a new normal. This is where bereaved mothers find and adjust to their new life as bereaved mothers: incorporating grief into daily life, moving forward but not forgetting, and, oftentimes, living as a legacy for their baby. Tee, mother of Ellie (20 weeks gestation), describes this succinctly when stating, “I’m learning to accept that she’s not here with me physically, but she’ll always be in my heart … I just want to honor her. I want to honor my baby.”
Trigger Initiating Recursive Process
While a new normal is the end of a straight stigmatized loss process, this path does not just end here. Triggers can occur that initiate a recursive process, leading the process through loss to repeat itself over and over. These triggers are oftentimes the positive and negative situational cues mentioned at the beginning of the process model of stigmatized loss. Whether it be a commercial featuring babies, seeing a family out in public, one’s transition into a subsequent pregnancy, someone mentioning the name of a bereaved mother’s baby, or a myriad of other things, these issues can initiate the stigmatized loss process to restart. As Kenna, mother of Jay and James (twins at 22 weeks gestation), says, “It’s a journey, and some days are good, and some days are bad.”
Discussion
Through our interviews with bereaved mothers, we identified the processes that these individuals go through as they navigate life after loss. Our findings answer our three initial research questions that sought to understand (1) the contributors to baby loss stigma, (2) the perpetuating factors to this stigma, and (3) actions that can be taken to help those having suffered from baby loss. First, we find that experiences after baby loss become stigmatized due to collective representations (e.g., societal norms regarding the 12-week wait), situational cues (e.g., happy families portrayed in advertisements), and personal characteristics of the bereaved (e.g., changes in one’s body with no baby to show). Second, while time softens grief, it does not remove the effects of loss and stigma, and situational cues play a role in perpetuating stigma and subsequent responses and outcomes for those having lost a baby.
Finally, our findings reveal numerous practices that could be employed to help facilitate stigma reduction and healing for those suffering from baby loss. Such actions include keeping a deceased baby’s memories alive by using their name, acknowledging bereaved mothers as mothers, enabling them to feel a sense of control, and providing resources for healing that extend far beyond the immediate loss. Supporting bereaved mothers and their families in this way can help them reach a new normal in life, while also acknowledging that triggers will initiate a recursive process back through the process model of stigmatized loss that will never fully end. While our research examined only bereaved mothers, our findings should extend to others involved in baby loss (e.g., bereaved fathers or siblings), but future research is needed to verify this similarity and identify possible differences.
Our findings generally revealed similar experiences post-loss for different types of baby loss (i.e., miscarriage, stillbirth, or infant loss). One exception to that is the greater societal silence faced by those suffering from a miscarriage. For example, there is a very apparent social norm of a 12-week wait before sharing a pregnancy with others in case a miscarriage occurs. With many of the participants in our study having followed this norm, they ended up either sharing their pregnancy and loss at the same time or dealing with the loss in complete isolation or in siloed loss support groups. The latter choice hides a component of the bereaved mother’s identity from family and friends. Outside of this 12-week wait norm, the remainder of the process model of stigmatized loss is mostly the same across participants of different types of baby loss.
Our findings also have direct implications for other types of stigmatized loss and other contexts. Suicide, for example, is also highly stigmatized (Cordisco Tsai et al., 2022; Evans & Abrahamson, 2020). The stigma of suicide likely leads family members through a similar stigmatized loss process as they navigate a sudden, unexpected loss accompanied by feeling that they are not allowed to talk about the loss and are excluded from most loss communities. The bereaved mothers we interviewed also brought up many contexts that they felt were similar to baby loss. One category of such contexts are topics that are not supposed to be talked about including birth stories, fostering/adoption of kids, marital/relationship issues, and mental health challenges. Other categories of contexts include situations where there is an end to having children either through the choice to not have further children, medical recommendation, infertility, or menopause.
Theoretical Implications
Our research investigates stigma-induced identity threat with bereaved mothers and uncovers the stigmatization process. Major and O'Brien (2005) reviewed and organized prior findings of social stigma and introduced the identity-threat model of stigma. We provide empirical evidence to showcase this identity-threat process with a thorough examination of post-loss experiences using rich qualitative data from bereaved mothers. We identify various relevant situations where bereaved mothers experience and cope with stigma, thus adding to the study of disadvantaged and stigmatized groups. Our research also exemplifies how disenfranchised grief (Doka, 1999) is experienced by bereaved mothers as well. Additionally, we expand the discussion on socially unrecognized loss along with its negative consequences and contribute to the examination of societal expectations of loss and grief.
Although stigma is prevalent in everyday life, previous research on stigma has mainly focused on the consequences and coping management of stigma in general (Hopwood et al., 2020; Åsbring & Närvänen, 2002). Very little research has been devoted to identifying the detailed process of stigmatization to better understand stigma and provide insights on how to prevent it from forming in the beginning. Theoretically, we explain the existing identity-threat model of stigma (Major & O’Brien, 2005) and introduce new constructs identified in the baby loss stigmatization process.
Most importantly, we found that stigma can be perceived as both negative and positive. Prior research suggests that stigmatized individuals often prefer to de-identify with stigma whenever possible as a coping mechanism (Link & Phelan, 2001; Major & O’Brien, 2005). However, we found that most of our participants were reluctant to let go of stigma because it connected them to their baby as well as their mother identity. Our research suggests that the stigma could be perceived as both an identity threat (negative) and an identity confirmation (positive). Even some triggering situational cues could be positive and lead to positive outcomes. This positive element of stigma could apply to other stigmatized groups as well and explain some of the stigma perception changes. Additionally, we provided evidence that this process is recursive because a stigmatized experience does not complete and disappear after one round.
Practical Implications
There are numerous ways that organizations and individuals can benefit from our findings to help bereaved mothers (and bereaved parents more generally too). With regard to the antecedents to stigmatized identity activation (i.e., collective representations, situational cues, and personal characteristics), the most important need is to raise awareness regarding baby loss. For example, on Mother’s Day (and Bereaved Mother’s Day which occurs the weekend before Mother’s Day each year), messaging could be developed that highlights that mothers come in all different types. These types of mothers include mothers with kids living in their homes, mothers who have lost a child, mothers who have never been able to have a child due to infertility, and mothers who adopt or foster children. This will help fight against the stigma of non-traditional motherhood and help make bereaved mothers (and other types of non-traditional mothers) feel valued. Similar practices could be pursued for bereaved fathers on Father’s Day as well.
Additionally, other organizations and individuals should welcome conversations about baby loss and approach rather than avoid the conversation to help fight against the stigma. The bereaved mothers we interviewed noted several specific ways to help support them. For one, support should come in the form of people listening without judgment, time constraints, or expressions of fear. People should be educated on what to say around bereaved individuals—including avoiding statements we found in our research as harmful (e.g., “they are in a better place” or “have faith”). Instead, the name of a bereaved parent’s deceased baby should be mentioned, or they should be asked about their favorite memories or items representing their baby. Education should also include tangible actions that can be performed to help the bereaved, such as caring for other children or pets, providing referrals to good books or podcasts, making meals, or gifting self-care items. All grief education needs to emphasize the importance of not providing support only immediately after a loss but also in the months and years to come when most support substantially wanes or ends completely.
Part of the stigma of baby loss, particularly about miscarriage, is the 12-week wait where pregnant mothers are recommended to wait until after the highest rates of miscarriage occur to tell others about their pregnancy. However, this norm only perpetuates the stigma of baby loss, leaving mothers who experience miscarriage to feel like they should not talk about their loss because no one knew they were pregnant in the first place. This waiting period also diminishes the value of pregnancy for those experiencing stillbirth by decreasing the time that they can celebrate their baby with friends and family. These mothers should primarily share their news with others who will be supportive in the case of loss. However, these newly pregnant mothers should not be encouraged to avoid telling everyone, including their support network, about their pregnancy until the end of a 12-week wait period.
In addition, the vernacular used by organizations regarding miscarriage, stillbirth, and related medical procedures needs to be reviewed. As one of our participants indicated, they went in to have a D&C (a medical procedure to remove the deceased fetus from their body) and had to sign paperwork indicating that they were aborting their baby. This caused substantial emotional distress, necessitating that paperwork and language be altered to be more respectful to bereaved mothers and their families that are having to go through a loss that is against their desires.
Conclusions
Mothers are people who have living children, but they can also be people who have lost a baby. Bereaved mothers seek to be acknowledged as mothers just like all other types of mothers. These mothers who have lost a baby are shrouded under a cloud of stigma that influences their subsequent experiences, including how they identify themselves and respond to environmental triggers that threaten their identity as a mother. Organizations and individuals alike could help raise awareness about and combat stigmatized loss. Increased sensitivity and inclusivity can assist in bringing bereaved mothers and others facing loss out of the weight of stigma they live under, allowing them to freely and more joyfully experience their true identity.
Footnotes
Acknowledgments
This research was generously funded by the Star Legacy Foundation and an ACR-AMA research grant on transformative consumer research. All data are available by request from the first author. This research is motivated by and dedicated to Solomon Onyx Minton who died at three weeks old in January 2021. The authors thank Ron Hill, Three Hopeful Hearts, the Star Legacy Foundation, Eliza Fay, participants from our research study, and Daniel and Katherine Minton for helpful feedback on versions of this manuscript.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the ACR-AMA Research Grant on Transformative Consumer Research (NA) and Star Legacy Foundation (NA).
Ethical Statement
Interview Guide
We are sorry for the reason that you are here, but we truly appreciate you being with us today. 1. Tell me about (deceased baby’s name provided in consent materials by the participant). a. Consider prompting if the cause of death was not shared. 2. What is your favorite memory of (deceased baby’s name), whether in utero or after birth? 3. Tell me about your journey post-loss. 4. Has going through this loss changed you? a. If so, how? (e.g., different purpose in life, new meaning to things, change of jobs, volunteering, etc.) b. If not already brought up—Has faith/spirituality been part of your journey? Can you describe this? 5. What has been most helpful for you in your journey post-loss? 6. What has been least helpful? 7. What do you do today to help you heal and/or keep memories of your baby still alive? 8. As you have gone about your daily life after your loss, have you noticed things that have felt hurtful to you? a. If yes, can you please provide an example? i. How was this hurtful? b. (After sharing): Do any other examples come to mind? c. If prompting is needed: information you have seen online, while at a store, conversations you have had with others, etc. 9. Have you experienced other times where your life changed abruptly like it did with your loss? a. If yes, can you tell me more about those? b. Did you find marketing had a similar positive or negative influence on you after that change? If so, how? If not, why do you think that is the case? 10. Is there anything else you want to share?