Preparing Heart and Mind for Becoming a Parent Following a Diagnosis of Fetal Anomaly

Abstract

Using a cross-sectional, grounded dimensional analysis study design, we collected demographic and health information and conducted telephone interviews with 37 expectant parents of 26 fetuses within 25 families. We describe a theoretical model with a core process of preparing heart and mind for becoming a parent following a diagnosis of fetal anomaly. The process of preparing was influenced by fetal and future child health, experiences of previous loss, and social interactions within both new and familiar settings. Expectant parents reported varying turning points and strategies associated with three distinct trajectories of relating to the fetus or “baby” yet to be born. These relational trajectories include claiming the child as one’s own, delaying the connection to the fetus, and doing the routine of pregnancy. With the findings presented in this article, we extend the understanding of how parenting develops during pregnancy in the context of a fetal anomaly.

The transition to parenthood and formation of the parent–child relationship originate during pregnancy (Raphael-Leff, 2010; Slade, 2002; Slade, Cohen, Sadler, & Miller, 2009). When a major fetal anomaly is diagnosed, expectant parents experience an altered transition to parenthood and report high levels of distress that can extend well beyond birth (McKechnie & Pridham, 2012; Skari et al., 2006; Skreden et al., 2010). The negative impact of a major fetal anomaly diagnosis on expectant parents poses threats to a psychologically healthy transition to parenthood and to the parent–child relationship that begins before birth, yet current knowledge in this area is lacking.

In the United States, 3% of infants are born with major anomalies (Rynn, Cragan, & Correa, 2008), and this percentage increases to 10% when assisted reproductive technologies are used to achieve pregnancy (Rimm, Katayama, Diaz, & Katayama, 2004). Major anomalies are defined as structural or functional body malformations of genetic or partly genetic origin that require treatment (Christianson, Howson, & Modell, 2006). Prenatal detection rates have increased dramatically in the past two decades (Hobbins, 2010), with approximately half of all major anomalies identified before birth (Pilu, Nicolaides, Meizner, Romero, & Sepulveda, 2009). Advances in medical treatment are improving survival rates for affected infants (Gould, Figueroa, Robinson, & Reichard, 2011), yet long-term risk for suboptimal health and development remains (Ballweg, Wernovsky, & Gaynor, 2007; Mussatto & Tweddell, 2005). These threats to infant health and development can be complicated by low parental responsivity and poor quality of parent–child relationships (Wolke, Schmid, Schreier, & Meyer, 2009).

Theories regarding the transition to parenthood do not adequately explain the prenatal process of becoming a parent in the context of a fetal anomaly diagnosis (Demick, 2002; Slade et al., 2009). Although not focused on the process of becoming a parent during pregnancy complicated with a fetal diagnosis, our initial exploratory work made a contribution toward addressing this gap in the literature. In a previous article (McKechnie & Pridham, 2012), we relied on retrospective data and expanded George and Solomon’s (1996, 1999) conceptualization of the motivationally based behavioral system of caregiving. Although findings included a preliminary outline of the concept of preparing heart and mind as a goal for caregiving, the variation in how expectant parents experienced and related to their fetus was not well understood. The purpose of the study reported here was to address this gap in the theoretical and empirical literature by examining how parenting develops after a major fetal anomaly diagnosis.

Methods

We used the comprehensive and rigorous methodological approach of grounded dimensional analysis to explore the phenomenon of the early transition to parenthood in the context of a fetal anomaly diagnosis and to extend knowledge about an understudied social psychological process (Bowers & Schatzman, 2009; Caron & Bowers, 2000). Grounded dimensional analysis is a combination of theoretical assumptions and analytic strategies of grounded theory (Glaser & Strauss, 1967; Strauss, 1987) and procedures of dimensional analysis (Caron & Bowers; Schatzman, 1991). Rooted in the theoretical assumptions of symbolic interactionism (Blumer, 1969; Mead, 1934, 1964), grounded dimensional analysis is used to understand meaning in interaction ascribed by the person in context, and answer the conceptual question: “What all is involved here?” (Schatzman, 1991, p. 310). Analytic strategies of grounded theory include constant comparative analysis and theoretical sampling, and the procedures of dimensional analysis include iterative use of open coding to prevent premature judgments in analysis.

Recruitment and Consent

From May, 2011 to August, 2012 we used convenience sampling to recruit expectant parents from two regional tertiary care centers in two upper-Midwestern United States cities to participate in one-time telephone interviews. The criteria for participant eligibility included expectant parents who received a diagnosis of a major fetal anomaly and made a decision to continue pregnancy. Eligible fetal diagnoses included a favorable prognosis for survival with medical and/or surgical intervention during the first year of life. Those with multiple fetal anomalies or a suspected syndrome were included. Expectant parents who chose pregnancy termination, anticipated fetal demise, or received a diagnosis of a mild anomaly not anticipated to require medical or surgical intervention during the first year of life were excluded. The decision to exclude the latter groups was made because the phenomenon of interest was becoming a parent with the presumption of giving birth to a viable infant expected to have extensive health care needs during the first year of life.

Pregnant women, whether partnered or not, were eligible to participate. Eligible expectant couples included the pregnant woman and her partner. If the pregnant woman’s partner declined participation, the pregnant woman could still participate. If the eligible pregnant woman declined participation in this study, however, ethics board requirements excluded the partner from participating alone to protect the privacy of the mother’s health information. Eligibility criteria for all study participants included fluency in English and a minimum age of 18 years.

The research team included the authors affiliated with a research university and clinicians employed at the recruitment sites. The clinicians identified and recruited eligible potential participants during regularly scheduled clinic appointments or by telephone. Participants could also self-refer using study brochures made available at the recruitment sites. Interested potential participants received study information either in person, by mail, or by email. After clinicians obtained participant permission to be contacted, the first author screened them by telephone or email to ensure eligibility; describe the study’s purpose, procedures, and risks and benefits; and answer their questions. If the potential participant chose to enroll, the first author scheduled a telephone call at a time convenient for the family to complete a formal consent process and collect data. Either signed or documented verbal consents were obtained from all participants. Women participants also signed a release of medical information document. The institutional review boards at each of the participating facilities approved this study.

The first author conducted the telephone interviews with expectant parents during weeks 25 to 40 of pregnancy. The method and timing of the interviews were based on parent feedback in previous studies to minimize the burden on families during an emotionally difficult time. Additionally, we anticipated that telephone vs. in-person data collection would facilitate enrollment of participants with a range of experiences, including intense emotions, and allow for interviews at differing times after the diagnosis.

We generated the early interview guide for an unstructured, interactive interview. This interview began with a statement inviting the expectant parents to tell their stories, followed by open-ended questions (Corbin & Morse, 2003). We retained the same invitational statement and the initial questions throughout the study because they effectively engaged expectant parents in sharing their experiences. By following each participant’s lead in the conversation, the first author obtained rich data related to the topic of becoming a parent. Consistent with grounded dimensional analysis, we revised the interview guide from an unstructured to a semistructured format as data analysis dictated. Additional questions contained topics, words, and phrases from previous interviews to elicit comparisons for data analysis. The invitational statement, initial open-ended questions, and examples of additional questions are found in Table 1.

Table 1.

Interview Guide.

Structure of the Interview	Interview Content
Invitational statement	Over the past three years, I have had the privilege of hearing many [couple’s/women’s/men’s] stories of finding out about the prenatal diagnosis and their experiences with pregnancy—both before and after the prenatal diagnosis and birth. Although these stories have given me a glimpse at the range of experiences of becoming a parent after finding out about a prenatal diagnosis, this experience is not well understood. People think of themselves as becoming parents at different times; some very early in pregnancy, some later in pregnancy, and some not until after the birth.
Initial questions	Can you tell me about your experience? Tell me about—because this is different for everyone—can you describe to me what becoming a parent is for you personally? What all does it, or will it involve?
Content areas for probe questions that developed as the study progressed	When and how of becoming a parent, including certain events and technology Extent of knowledge about the diagnosis/prognosis and what it means for them Decisions about where to start and in what order to do things Use of online resources Descriptions of responding to the unexpected, and having to take things as they come If preparing, how? If not preparing, why not? If planning ahead, how? If not preparing, why not? References to making parenting decisions and having or not having control or choices Thoughts about what is to come—the birth, the baby being in the hospital—how do expectant parents see themselves in that picture? Increasing or decreasing connection to the fetus/baby/son/daughter before birth
Specific questions added as the study progressed	Some expectant parents have described “turning points” after finding out about the fetal diagnosis and/or during the pregnancy. In other words, an experience that changed the way they felt or thought about themselves, the pregnancy, or the fetus/baby/son/daughter. I am wondering if you have had this experience. Some expectant parents describe special ways of knowing the baby before birth, yet others have not. Can you tell me if this is something you have experienced? What has been the most helpful to you during this experience, either on the medical side of things or otherwise, outside of the medical experience? Given that you have the prenatal diagnosis, if you could change your experience since finding this out, how would that go—so that you could get what you are needing and wanting? Not only what you might do differently, but also what others could do differently.
Closing questions	Have you had a chance explain what you think is important about this experience/becoming a parent? What should other expectant parents in this situation know about? What questions should I have asked that I didn’t ask? How has this interview gone for you?

Participants

The sample included 25 families comprised of 25 pregnant women and 12 men who had received a fetal diagnosis. Of these 37 expectant parents, 19 were married, 6 were engaged, 9 were partnered, and 3 were single women. There were fewer expectant fathers because some expectant mothers were single and also because some partners declined to participate. Their ages ranged between 18 and 52 years (mean = 29), with expectant mothers 18 to 46 years (mean = 28) and expectant fathers 19 to 52 years (mean = 30). With regard to race/ethnicity, 32 participants self-reported as White, 3 as Hispanic, and 2 as Black. Most of these expectant parents (62%; 16 women, 7 men) had pursued education beyond a high school diploma and 38% (9 women, 5 men) had a high school diploma or less. Household incomes ranged from less than $10,000 to more than $150,000 (median categorical income $30,000 to $49,999).

Pregnancies involved a total of 26 fetuses diagnosed with at least one major congenital anomaly, and included 21 singletons and four sets of twins, with five of the eight twins affected by an anomaly. Fifteen fetuses were female, nine were male, and the gender of two was unknown to the expectant parents. Fetal diagnoses included complex congenital heart defects (hypoplastic left and right heart syndromes, tetralogy of Fallot, double outlet right ventricle, double inlet left ventricle, coarctation of the aorta), central nervous system disorders (spina bifida), abdominal malformations (gastroschesis, omphalocele, congenital diaphramatic hernia, abdominal cyst, bowel perforation), cerebrospinal disorders (ventriculomegaly, hydrocephalus), and oral-facial cleft. Complex genetic conditions were also diagnosed or suspected (Edwards syndrome, Noonan syndrome, Down syndrome, and vertebrae, anus, trachea, esophagus, and renal or VATER syndrome), as well as other serious conditions (congenital cystic adenomatoid malformation, hydrops, bilateral pleural effusion, and monoamniotic-monochorionic twins).

Data Collection and Analysis

We considered data collection and analysis as continuous and complementary. Data included 26 transcribed audio-recorded interviews from 25 families, parent-reported demographic information, and health information about the fetal diagnosis drawn from maternal medical records. Interviews, lasting between 25 and 71 minutes, were transcribed verbatim and deidentified immediately for data analysis.

Participating couples were interviewed together to capture their collective narrative in all but one instance, in which the couple had conflicting employment schedules. One interview was only partially recorded because of error in equipment use. The first author immediately remedied the error by audio-recording her field notes and extensive verbal accounts of the participants’ responses stated concurrently with playback of audio-recorded interview questions and summary statements from the original interview. We included these data for analysis.

Ensuring trustworthiness involved peer review and debriefing, member checking, and an audit trail of notes and memos, as well as using rich description throughout the analysis (Lincoln & Guba, 1985; Strauss, 1987; Strauss & Corbin, 1998). Independent and collective data analyses were conducted by members of the research groups, which included 2 to 12 researchers and clinicians in nursing, psychology, sociology, medicine, and social work meeting in various constellations at least weekly. Research group members identified a broad range of codes, drew attention to gaps in analysis or potential mis-interpretations, and suggested the next steps for data collection.

In grounded dimensional analysis, the dimension is considered the unit of analysis (Bowers & Schatzman, 2009; Caron & Bowers, 2000; Schatzman, 1991). Dimensionality of a phenomenon is described with attributes (e.g., the idea that despite technology or clinical expertise, only so much can be known about fetal health) in a context (e.g., fetal diagnosis). These attributes are influenced by conditions (e.g., experiences of loss), prompting related strategies (e.g., attending appointments but not asking questions) and involving consequences or meanings (e.g., need to prepare by reserving judgment on the outcome).

Understanding and describing a phenomenon requires variability in the concepts found within and among the dimensions, and determining the salience of dimensions considering the particular analytic perspective. To accomplish this, we used the analytical strategy of theoretical sampling to focus on sampling concepts with constant comparison of new data to previously coded data (Glaser & Strauss, 1967; Strauss & Corbin, 1998). Additionally, serendipitous recruitment of individuals with certain characteristics (e.g., unpartnered participants, participants with recent losses) often matched theoretical sampling needs.

Analysis involved dimensionalizing the interview data, often described as open, axial, and selective coding (Bowers & Schatzman, 2009; Schatzman, 1991; Strauss, 1987). In Table 2 we offer examples that illustrate the approach to data collection and analysis and types of coding. Open coding was used throughout data collection and analysis to prevent premature constraints on the analysis and allowed for a fine-grained understanding of the phenomenon based on the participant’s perceptions. Axial coding was incorporated alongside open coding using a combination of inductive and deductive thinking. As the study progressed, selective coding was used to explain patterns in the data and to identify a core category, which in this analysis was identified as a core process.

Table 2.

Approach to Data Collection, and Analysis and Types of Coding.

Approach	Types of Coding
Early approach Employ open-ended interview questions as appropriate starting points for each interview Avoid assumptions about definitions or timing of becoming a parent	Open coding Use word-by-word and line-by-line coding Consider in-vivo codes Stay grounded in the data and compare data with data Identify preliminary dimensions Acknowledge theory-laden thinking and remain open
Continued iterative approach with open coding	Axial coding
Add interview questions to further dimensionalize [Resulted in dimensionalizing the claiming, delaying, and doing the routine trajectories] Pursue identification of a core process	Explore conditions that influence social-psychological experiences and actions Look for relationships among conditions and social-psychological experiences and actions Begin to explore consequences of conditions, social-psychological experiences, and actions
Later iterative approach with open and axial coding	Selective coding
Ask specific questions to examine and integrate relevant findings to the core process [Facilitated recognizing and relating the dimensions of claiming, delaying, and doing the routine of pregnancy to the core process of preparing heart and mind to become a parent]	Elaborate on codes related to the core process Explore variation in conditions and consequences Integrate codes identified in earlier analysis Look for saturation in dimensions relevant to the core process

Note. Informed by Bowers & Schatzman (2009), Caron & Bowers (2000), Schatzman (1991), and Strauss (1987).

Through collaborative analysis with research and clinical group members, we used a rich data set to refine and relate previous conceptualizations to preparing heart and mind (e.g., expressing or containing negativity, searching for more information, cognitive and social limit-setting). Beyond developing and synthesizing previous conceptualizations, this analysis yielded a detailed understanding of expectant parents’ process of preparing. Analysis continued until the dimensions, grounded in the data and identified as salient to explaining the phenomenon, formed a theoretically saturated network of conceptual relationships that centered on, connected to, or reverted back to the core process of preparing heart and mind. Theoretical saturation in data analysis was determined by the following three criteria: (a) the categories with the most explanatory power were densely coded; (b) the core process was thoroughly explained, its conditions and varied appearances were accounted for; and (c) the data no longer yielded new information pertinent to the generation of the theory (Strauss, 1987; Strauss & Corbin, 1998).

Findings

Preparing Heart and Mind for Becoming a Parent

We provide here an overview of the process of preparing heart and mind for becoming a parent following a diagnosis of fetal anomaly, with more detailed description to follow. The theoretical model is illustrated in Figure 1. Findings revealed that preparing heart and mind was a dynamic and nonlinear process. Fetal and future child health information, experiences of loss, and social interactions influenced the preparing process. These influencing conditions triggered turning points, described as realizing a different perspective. Expectant parents explained that turning points led them to develop, amend, and anticipate certain strategies for preparing emotionally and cognitively for becoming parents. These strategies included efforts to proceed in service of the child, to address external needs, and to integrate experiences with the normative approach to pregnancy. We identified trajectories based on how these strategies, and the consequences of the strategies, clustered and characterized the ways in which expectant parents experienced pregnancy and related to their offspring.

Figure 1.

Theoretical model of preparing heart and mind for becoming a parent following a diagnosis of fetal anomaly.

The three relational trajectories of claiming the child as one’s own, delaying the connection to the fetus, and doing the routine pregnancy are embedded in the preparing process. Expectant parents varied in their efforts to adequately meet their emerging emotional and cognitive needs by employing strategies to attend to the prenatal care of the expectant mother and fetus and anticipate postnatal caregiving for the infant. Change in an influencing condition (i.e., fetal/future child health information, experiences of loss, social interactions) often brought about additional turning points and altered trajectories during the pregnancy. Expectant parents also believed in the potential of future turning points and possibly altered trajectories in the process of preparing heart and mind for becoming a parent.

The findings described in this article represent a substantial expansion of the concept of preparing heart and mind based on theoretical work on attachment and caregiving (McKechnie & Pridham, 2012). In our earlier article, we introduced the concept and suggested that preparing heart and mind was a preliminary goal for caregiving during the prenatal time. This goal could be elaborated with intentions, expectations, and motivations for protecting and nurturing the offspring. In this article, we explain that the meaning of preparing heart and mind is deeper, broader, and more extensive in time than the meaning conveyed in reaching a prenatal goal. The complex, ongoing process discussed here shows how the expectant parents varied in their early transition to parenthood.

Influencing Condition: Fetal and Future Child Health Information

Expectant parents’ described that becoming a parent after the diagnosis involved dealing with continuously incoming new health information from a range of sources. Health information from clinicians and test results regarding the type, complexity, or certainty of the fetal diagnosis and maternal health accumulated during multiple medical appointments. Expectant parents also received health information from their own parents and relatives (e.g., family histories). Information suggesting future child health issues was available from other families caring for infants and children born with anomalies who shared their stories in person, via the Internet, or through other media. Additionally, some expectant mothers described their intuition as having a strong influence on their beliefs about the fetus’ health and well-being. Information from all of these sources either provided reassurance or increased worry or uncertainty, and could prompt turning points for expectant parents.

Influencing Condition: Experiences of Loss

Preparing emotionally and cognitively to become a parent after the diagnosis was influenced by experiences of loss. Loss experienced by expectant parents or those close to them included a past interrupted pregnancy; death of a fetus, neonate, or child; or even death of a parent. Expectant parents also discussed loss with regard to the current pregnancy and anticipated losses of the normative postbirth experience and closeness to the infant. One expectant mother explained, “I’m just terrified that I won’t even get…one photo of her before they cut her, and just a photo of her, period.…And we’re not going to be able to hold her.” Expectant parents usually reframed their thinking about such losses as necessary concessions for the well-being of the infant whose emergent medical needs would take priority over their needs. Loss did not consistently produce the same response among all expectant parents, however, because it was how they ascribed meaning to the loss that affected the preparing process. Their perceptions of loss prompted developing strategies that facilitated a tolerable state of emotional being.

Influencing Condition: Social Interactions

After the diagnosis, expectant parents’ emphasized that the preparing process involved social interactions with others that took place in unanticipated new settings (e.g., clinics, hospitals, Internet sites) as well as familiar settings (e.g., family, work, faith community). Frequent interactions with a wide range of clinicians, including specialty nurses and physicians, introduced them to unavoidable medical jargon and time constraints for clinically important discussions and decision making. For many, functioning in the health care setting required learning vocabulary and communication skills that consumed time and energy both in and out of the health care setting. Social interactions in familiar settings changed after a fetal diagnosis because the circumstances of pregnancy and becoming a parent were no longer as expected, with socially understood or acceptable responses and preparations. Although expectant parents valued their privacy and emotional space to cope with the diagnosis, there were feelings of isolation often amplified by others’ inappropriate remarks, assumptions, and judgments.

Turning Points

Expectant parents referred to turning points that represented a psychological shift in their perspectives about the pregnancy, fetus, and/or themselves. A turning point was often described in terms of a departure from the normative sociodevelopmental phase of pregnancy and transition to parenthood. Expectant parents described at least one turning point after the fetal diagnosis. One expectant father emphasized that the reality of the diagnosis changed their focus from a joyful experience to concern about the well-being of the fetus: “The only turning point was just kind of fear.…It wasn’t about us anymore.” This change in focus was found in most of the expectant parents’ accounts.

Expectant parents emphasized that their most intense turning points involved the crucial issue of fetal viability. One expectant mother explained that after hearing the initial news of the diagnosis, she and her partner suddenly shared the thought, “Maybe this isn’t our baby to have.” Although this initial turning point provoked the sadness of psychologically letting go of her “baby,” subsequent turning points not only changed their emotional outlook but also changed their focus from what they could not do to what they could do. Expectant parents tended to recall multiple turning points over the course of the pregnancy. These turning points were linked to changes in the influencing conditions; for example, a turning point could occur after learning about the likelihood for successful medical interventions and survival for the child after birth. One expectant mother described how the turning points changed her perspective from despair with the lost prospect of becoming a mother to optimism with energy to take a new direction:

My turning point was going from thinking that we weren’t taking our son home, because we were told, “It wouldn’t be a bad idea to make funeral arrangements.” Going to [another clinician], “Your son has a ninety-two percent chance of survival.” That’s a huge turning point for me. That’s when I was like, “We can do this. We’re going to do this. We’re going to bring him home. He’s going to do anything he wants in life, and he’s going to outlive us.” And I’m going to make everything in my body, anything in my will power to make that happen.

Fetal viability varied in this sample, and the intensity and frequency of turning points did not necessarily correspond to the severity of the fetal diagnosis. Turning points related to the expectant parent’s perceptions about the future and relationship with the fetus and future child. A key consequence of a turning point in the process of becoming a parent was described as taking a new direction for preparing emotionally and cognitively based on their perceived experiences, abilities, and needs.

Relational Trajectories

We identified three differing trajectories, with each representing an expectant parent’s chosen course: claiming the child as one’s own, delaying the connection to the fetus, and doing the routine of pregnancy. These trajectories included expectant parents’ perceptions of relating to their offspring during the early pregnancy, at the present time, and beyond birth, and the related strategies for preparing to accomplish what was needed psychologically and behaviorally to become parents. Summarized in Table 3, strategies used within the relational trajectories included efforts to proceed in service of the child for claiming, to address external needs while delaying, or to integrate experiences with the routine of a normal pregnancy. The expectant parent’s gender did not appear to be related to any particular relational trajectory.

Table 3.

Strategies Used Within the Relational Trajectories of Preparing Heart and Mind.

	Strategies Used Within the Relational Trajectories
Influencing Conditions	Claiming the Child as One’s Own	Delaying the Connection to the Fetus	Doing the Routine of Pregnancy
Fetal/future child health information	Engaging in health care Recognizing/supporting the child Protecting the child	Doing what is necessary Focusing on logistics	Accumulating normative information
Experiences of loss	Documenting the pregnancy and child Being with the child Encouraging others to be with the child	Distancing oneself from the pregnancy/fetus	Promoting acceptance of the pregnancy/future child with a diagnosis
Social interactions	Determining the meaning of the diagnosis Using a variety of resources	Accepting low levels of control Compartmentalizing the diagnosis	Carrying on as usual Censoring conversations

Relational Trajectory: Claiming the Child as One’s Own

The trajectory of claiming the child as one’s own followed turning points that gave rise to what expectant parents described as latent responses of love and commitment with regard to the fetus’s needs. These expectant parents saw themselves as already being parents. For them, being a parent was often based on a strong and simple emotional response, as illustrated by an expectant father’s description:

It’s your kid [child]. You’re the parent of that kid [in utero] that has the birth defect. And it’s just such a hard thing to just do, day by day and everything.…This is why I’m feeling this way, because I am the parent.

Claiming also included being a parent with responsibilities for the fetal child as a new member of the family and community who would require their caregiving, medical intervention, and acceptance. One expectant mother remembered how she and her partner saw themselves and their roles: “We both instantly just viewed ourselves as parents, and what we needed to do to prepare, and taking the steps that we needed to take to be good parents.” This shift in self-perception of “instantly” becoming a parent, and striving to be a good parent with newly realized responsibilities and health care priorities, was common among expectant parents who were claiming.

Claiming the child as one’s own also involved ideas of reciprocity as expectant parents described giving to and providing for the child, as well as receiving unexpected benefits and gifts from the child still in utero. This included recognition of what is important in life, awareness of one’s potential for resilient parenting and caregiving abilities, redirection of life course, and unexpected joy. One expectant mother movingly expressed a spiritual awakening and new purpose for a reciprocal relationship with her “angel”:

I felt like she saved my life. I was going down a really bad path. And when I found out about her, I knew that God sent me her for a reason—to kind of redirect my path. And I do, I thank God for her every day. Even though she does have the problems that she does…I love her so much.…And it’s crazy because I haven’t even met her yet.…She’s just my angel, my blessing. She changed my life, and I’ll just hope to never let her down.

The perception of meaningful reciprocity was the hallmark for the claiming trajectory. The meaning invoked in these expectant parents was based on their specific hopes, feelings, and thoughts in service of the child in utero. They expressed closeness, love, and affection as well as a parental duty, a charge to care for and protect the child. As one expectant father explained, “It was like, what can we do for [name of fetus] to make sure he’s going to come out okay. The parental kind of got intensified.” The “parental” involved “being relied on” by the offspring to make the “the right decisions.”

Expectant parents developed claiming strategies in response to the influencing conditions. In response to fetal and future child health information, claiming involved the strategies of engaging in the health care system, recognizing, supporting, and protecting the fetal child, and thinking of this commitment as extending far into the future. Using fetal health information, they gained knowledge and developed ideas about the fetal “son” or “daughter” who lived in utero and would soon live “extra utero.” These expectant parents focused on the fetus as an individual with particular characteristics and strengths rather than disabilities or obstacles. The fetus was often described as “feisty,” “strong,” “tough,” “a fighter,” and having “spunk.” Fetal health information also prompted these expectant parents to put conscious effort toward protecting the physical and mental well-being of the fetal child. Expectant mothers who were claiming emphasized the need to keep their emotions or negative thoughts and behaviors below the threshold of distress as much as possible so as to shelter the fetus from any negative effects.

Claiming included accounts of an intuition about fetal outcomes. Although intuition about positive outcomes inspired hope, the weightier intuition of possible fetal or neonatal demise triggered complex emotions, including fear and sadness. Some expectant parents recalled how the latter situation challenged clinicians to provide care for their complicated emotional needs.

Loss was not a prominent dimension in the claiming trajectory because claiming was focused on gaining, not losing. When loss issues did come up, these expectant parents redoubled their efforts to recognize the impermanence of life and embrace the pregnancy and the child yet to be born. Strategies included documenting the pregnancy and child in utero, “being with” the child in utero, and encouraging others to do so. Documentation involved collecting and displaying ultrasound photographs as snapshots on the refrigerator and as framed portraits, included among portraits of other family members. The imagery of the child in utero was referred to in a somber rather than a joyful tone. Punctuated with her tears, one expectant mother said, “It’s nice to see, to have the ultrasound pictures afterward, and to be able to take them home with us and show our friends and family and say, ‘This is our little girl.’”

Being with the child in utero involved a heightened awareness of fetal movements, physically interacting with the fetus, and thoughts about how the fetus might be experiencing life in utero. Encouraging others to be with the fetal child included preferences for family members to talk about the “baby” as part of the family, and inviting partners and older siblings to feel fetal movements. An expectant mother told her toddler, “This is our baby here.” She explained what her son would do:

He’ll just come and he’ll lay his head on there and [say], “My baby.” And he’ll hug my belly. We just want her [fetus] to feel…loved and cared for. If she’s unable to be with us when she’s born for very long, at least…she was loved.

Claiming strategies in response to social interactions with clinicians and other families involved determining the meaning of the diagnosis and using a variety of resources to orient themselves in a new context. Determining the meaning of the diagnosis for them as parents, the future child, and the family could be a focal point in the process of preparing. Some expectant parents found much-needed hope and comfort in counseling offered by specialized physicians, nurses, and social workers. Such interactions between expectant parents and clinicians, however, were not always positive. These expectant parents’ tended to invest in being proud and happy during the prenatal transition to parenthood, and developed a sensitivity to being pitied by others. One expectant mother remembered,

I found myself, even within just a few weeks [of the diagnosis], getting mad at people.…A genetic counselor wanted to give me a big hug and [said], “I’m so sorry.” And I’m already kind of getting defensive and getting mad because I’m like, “She’s still a baby, and we’re still happy to have her.” It made me feel like I’m already a parent of a kid with special needs. And I’m not apologizing for my kids, so don’t pity me, don’t pity my kid.

Claiming strategies were often shaped by social interactions with other families caring for children born with medical needs. Expectant parents realized that becoming a competent parent to a child with complex needs required using a variety of resources that went beyond the normative resources (e.g., family, friends, infant care books) that could provide information only for healthy pregnancy and infant care. Competency as a parent also required being emotionally able to parent the child, and as one expectant mother explained: “Actually seeing babies and hearing these moms’ stories [in person and through the Internet made] all the difference in the world” for promoting her emotional well-being and helping her feel prepared.

The relational trajectory of claiming the child as one’s own describes efforts toward parenting a child in-utero. Other expectant parents in this sample did not share this experience. The contrasting trajectory of delaying the connection to the fetus was experienced as a result of turning points that led to very different strategies.

Relational Trajectory: Delaying the Connection to the Fetus

The trajectory of delaying the connection to the fetus was characterized by developing and maintaining the perspective that becoming a parent was in the future, and uncertain. Expectant parents who were delaying expressed a constricted process of preparing heart and mind that was directed away from experiencing the pregnancy and the offspring and onto addressing external needs. Delaying tended to result from turning points related to the unexpected change in plans; uncertainty about pregnancy, fetal, and infant outcomes; and their equivocal hope for the infant. An expectant mother recalled her thinking shortly after the fetal diagnosis was made:

We were looking forward to baby showers and everything like that, but then they [diagnosing physicians] gave me, you know, the condition of the baby. I don’t know if [this could] be a stillbirth or not, you know. I don’t want to get my hopes up too much.

Key comparisons with data from expectant parents who had histories of loss (e.g., miscarriage, infertility) highlighted a sense of caution and a common position of being isolated outside the expected social experience of pregnancy.

Mixed emotions predominantly involving fear of fetal loss made it difficult for these expectant parents to imagine or figure out how they might parent a child with special needs. Some remembered growing up with other children in the community who were different and were thought of and treated as outcasts. For expectant parents who focused on an uncertain future for a child who would be “a lot different” or “not normal,” these unclear expectations affected their expressions of hope, making them global and without much detail. One expectant parent said, “I just hope it all works out how it is supposed to.”

Delaying the connection to the fetus represented a trajectory in which expectant parents developed strategies focused on protecting themselves emotionally in response to the influencing conditions. These expectant parents often used the term “fetus” for explaining diagnostic information and conveying or commenting on medical information. In response to the fetal and future child health information, delaying was related to the strategies of doing what is necessary and focusing on logistics. Doing what is necessary allowed expectant parents to behave in a socially responsible manner by showing up for their medical appointments, but at the same time to limit their emotions and thoughts. An expectant father described his cautious approach:

I try not to get too overly, I don’t want to say concerned, but too in depth with it. Or get my thoughts, you know, thinking that everything’s going to be positive and it’s going to be all fine. I don’t know. Basically, [we’ll] see what happens when he’s born.

Expectant parents who were delaying tended to recount their efforts to remain stoic and reserve judgment about infant health outcomes until after birth.

Focusing on logistics included addressing external needs such as employment, schedules, transportation, and lodging to facilitate attending medical appointments, giving birth, and visiting a hospitalized infant. As one expectant parent explained, she and her partner approached the situation by concentrating on the logistics:

It’s the logistics part of it right now, because we don’t know a lot of the other parts. So it’s something that we can worry about, or think about at least. Whereas the rest of it is, [we’re] not sure of yet.

The logistics represented identifying clear and manageable responsibilities in the context of the unknowns and emphasizing what was beyond control.

The central strategy of the parents related to experiences of loss was distancing themselves from the pregnancy and fetus by exiting from the preparations of having a baby. This strategy tended to be used when experiences of loss included very recent perinatal loss, as well as the perception that loss had occurred in the current pregnancy already because of the fetal diagnosis. These expectant parents saw the current pregnancy and fetus in jeopardy of following the same familiar course, leading to permanent loss and additional distress, pain, and anguish.

Distancing themselves from the pregnancy could involve stopping preparations for the infant: Baby showers were canceled or not planned. Setting up the crib, decorating the nursery room, and buying baby clothes could all come to a halt. Efforts were sometimes made to remove physical evidence of the pregnancy and expecting to be a mother, such as removing items from sight (e.g., placing them “in the basement”) for purposes of daily living. One expectant mother remembered how she eliminated “the maternity clothes, the vitamins, the things you do when you’re pregnant, like getting the email of how many weeks [pregnant] you are, or getting the baby magazines, stuff like that. Because I didn’t want to be constantly reminded.” Delaying in these ways seemed to offer expectant parents some sense of control over a situation (i.e., compromised pregnancy and fetal health) that was perceived as basically out of their control.

In response to social interactions, delaying strategies were directed toward accepting low levels of control and compartmentalizing the fetal diagnosis to reduce its impact on daily life. Although expectant parents often described how they could not do anything about the diagnosis itself, there was variation in their ideas about how much they could understand and could take part in the decision making and plan of care. One expectant father stated, “The doctor’s got the control. I’m not the one, you know. They tell me what we can or can’t do.…But otherwise whatever else is going on, they got the upper hand.” Expectant parents’ experiences of having little control seemed to dovetail with their expressed need to relinquish control of the pregnancy and their agency as patients and parents to the expertise of the specialty clinicians for health care and intervention plans.

Compartmentalizing the fetal diagnosis as separate from the rest of daily life meant keeping the activities and responsibilities related to the fetal diagnosis apart from social interactions with family, friends, and community. Containing the bad news of the diagnosis sustained positive home and familial environments and alleviated the psychological strain of the diagnosis. The diagnosis was glossed over when talking about the pregnancy with others, and these expectant parents also withdrew from social interactions. This was especially the case for those who harbored concerns that the diagnosis and prognosis would prevent fair or equal treatment—or even adequate love—from family members.

Expectant parents who were delaying perceived other parents with experiential knowledge (either in-person or via the Internet) as threatening to the level of preparing heart and mind that they had managed to achieve. An expectant mother explained how her fear prompted her to avoid learning of potentially negative outcomes from other parents who were caring for children with similar diagnoses:

I think my problem is that I’m scared.…Right now, I just want to focus on the positive. It’s hard for me to talk to [parents of a child born with a similar diagnosis].…I just, right now, want to live where I have all the positives; I don’t want to focus on the negative.

Thus, for these expectant parents, engaging in social interactions with parents raising children with special needs was not considered a beneficial resource for emotional support or for feeling prepared as a caregiver.

Relational Trajectory: Doing the Routine of Pregnancy

A third variation in the relational trajectories was doing the routine of pregnancy. This trajectory involved changed perspectives that supported the integration of normative strategies for becoming a parent. Expectant parents doing the routine of pregnancy expressed satisfaction in their emotional and cognitive mastery of the diagnosis or of doubt in the diagnosis. This trajectory followed turning points described as coming to a realization about what they could or could not know about the diagnosis; they had either reached an acceptance of or come to a conclusion about the diagnosis. Mastering the diagnosis did not necessarily require them to develop a complete technical understanding of the diagnosis. For those who doubted the diagnosis, however, a substantial knowledge of the possible anomalies was demonstrated.

Doing the routine of pregnancy was the trajectory for those expectant parents who perceived less need for preparing heart and mind and it allowed them to reframe their developing relationship with the offspring. This perception could happen either soon after a diagnosis was suspected or could develop over time. Over time, doing the routine also tended to involve a couple’s shared perspective. An expectant mother reflected on her experience:

There’s not a whole lot we can do at this point. We can’t change it. We can’t go back.…[The diagnosis isn’t] something that we can blame each other for. So in that aspect, we’ve learned to go on like life is normal, and hopefully like we would if it was, you know, a regular pregnancy.

Characterizing this trajectory were expectant parents’ accounts of developing new and different meanings of the diagnosis and wanting to come to know their child like parents normally would (i.e., as the child develops over time). They emphasized how feelings of loss diminished with ample support received through social interactions.

Doing the routine involved strategies that appeared to be a mix or aggregate of doing what is considered normative during pregnancy, concurrent with efforts to lessen the strain or burden that the fetal diagnosis suggested would await them after birth. The fetal and future child health information continued to accumulate in the medical records following the diagnosis. By doing the routine, however, expectant parents turned their attention toward the strategy of accumulating normative information on child health. This strategy involved, for example, finding the safest car seat and other infant care items that matched routine intentions for safeguarding or promoting the child’s health and development.

After the news of the diagnosis, expectant parents doing the routine tended to reference a long process of coming to an acceptance of their losses of the expected pregnancy and a healthy infant. They focused on the present, however, rather than dwelling on how they resolved their losses. Fortified by their own acceptance, the strategy expectant parents most often related to loss involved promoting acceptance by others of the pregnancy and future child. Promoting acceptance began with the normal announcements of having a boy or girl, as revealed by an ultrasound. Doing the routine also required them to make sure that their family members knew what would be needed in the future to ensure that the child will feel like a “boy” or “girl” and not a diagnosis. An expectant mother explained:

Just the way we tell people, like, “Yeah, it’s a girl.” Or having baby showers, and making sure that grandmas and grandpas and aunts and uncles still know that she is still a little girl and she needs to be spoiled and needs pink tutus and all of that.

The combination of resolving loss and accommodating the increased medical demands reframed the pregnancy experience as different, but also as routine. These expectant parents deemed appropriate an aggregate of strategies in their social interactions.

Doing the routine was facilitated by overwhelmingly positive perceptions of social interactions. Even with complex, chronic fetal diagnoses, expectant parents saw the many ways that these positive social interactions (e.g., among family and friends, within a faith-based community) invited them back to doing the routine of pregnancy. In response to social interactions, strategies included carrying on as usual, but also censoring conversations when necessary. Carrying on as usual meant having baby showers and enjoying pregnancy in private and public ways. This strategy was an antidote for feelings of self-pity and reinforced efforts to prevent pity for the fetus and future child. One expectant mother emphasized, “I didn’t want to feel sorry for myself or feel sorry for her [fetus].” Behaving as “normal” in public—in the work-place, for example—was also an important way to carry on as usual. One expectant mother explained the importance of carrying on as usual:

They [coworkers] can see how I react, how I am now. Which is normal. I don’t think I changed a whole lot at work. I wanted them to know that we are okay with this [fetal diagnosis and having a child with medical needs] and life will go on as normal.

Expectant parents brought up other situations, however, in which social interactions posed threats to their normalcy. Usually with acquaintances, doing the routine included the strategy of censoring conversations. One expectant father described protecting “a magical time,” an experience like others have of “becoming parents and having a baby.” An expectant mother who talked about censoring her conversations elaborated on the importance of this strategy:

So there’s nothing to be ashamed of. And we know that. But we also know that not everybody that talks to me and asks how far along needs to know, “Oh, hey, yeah, [we’re] seven months along, but she [fetus] has [multiple medical conditions].”

Censoring conversations was also necessary to protect the future child. Keenly aware of the potential for unwelcome comments, questions, and judgments from others regarding their future child’s disability, the risk of not censoring the diagnosis might lead to giving the future child “less of a shot at life.” An expectant father said, “We don’t want to, even before she’s born, give her a stereotype in the minds of individuals.” Thus, the fetal diagnosis was sometimes concealed to preserve whatever was possible of a normative, routine pregnancy and promote quality of life. The trajectory of doing the routine of pregnancy was on course toward a reconstructed norm in life, and therefore these expectant parents tended not to see a need for support tailored for families with special-needs children.

Discussion

The process of preparing heart and mind for becoming a parent extends our understanding of how parenting develops following a fetal anomaly diagnosis. The theoretical model shows that the early transition to parenthood in this context is a dynamic process of preparing, with three types of relational trajectories: claiming the child as one’s own, delaying the connection to the fetus, and doing the routine of pregnancy. This process could be influenced by conditions related to fetal and future child health, experiences of loss, and social interactions, potentially triggering multiple turning points and altering the relational trajectory. The relational trajectories comprise strategies the expectant parents used as well as how they integrated their sense of personal history, current expectations, and future parenting goals. These findings build substantially on our previous work (McKechnie & Pridham, 2012).

Other recent reports on expectant parents continuing pregnancy after a fetal diagnosis focused on their experiences of grief, distress, and uncertainty; encounters with clinicians; and struggles with multiple medical decisions (Sandelowski & Barroso, 2005; Statham, Solomou, & Chitty, 2000). These responses are similar to expectant parents’ responses to other adverse or altered paths to parenthood found in the literature over the past 20 years. Expectant parents with previous perinatal loss (Côté-Arsenault & Donato, 2011; Côté-Arsenault & Mahlangu, 1999; O’Leary & Thorwick, 2006; O’Leary & Warland, 2012) or with maternal health complications (McGeary, 1994) described fear of loss, making efforts to psychologically protect themselves, or developing intentionality for parenting. Expectant parents who overcame infertility (Sandelowski, 1994; Sandelowski, Black, Mercer, Bergum, & Stainton, 1994) emphasized gaining unique knowledge of the fetus, and those who awaited adoption (Sandelowski, Harris, & Holditch-Davis, 1993) developed a sense of the child belonging to them as new parents.

The expectant parents we interviewed likewise recounted many of these experiences, but also discussed their parenting status and the how they were becoming, or already considered themselves as, parents to a child with special health care needs. In addition, expectant parents explained how these experiences constituted turning points and affected their trajectory for becoming parents. This article constitutes the first advancement in theory of the prenatal phase of becoming a parent to a child expected to survive despite a life-threatening diagnosis based on expectant parents’ prospective experiences found in the literature.

Our findings advance what is known about processes of becoming a parent as documented for expectant parents anticipating healthy infants (McHale et al., 2004). A growing literature describes both supportive and risk-related effects that family processes have on parents, parenting, and normative child outcomes (Feinberg, 2003). Drawing on this literature, the strategies within each relational trajectory identified in this sample of expectant parents have the potential to positively or negatively affect parental caregiving, the parent–child relationship, family functioning, and child health outcomes after birth. How these relational trajectories change over time and influence these outcomes are questions for future research. How coparenting relationships form—whether with a partner, grandparent, or other family member—should also be considered as a factor potentially shaping the trajectory.

We suggest that among the parents in this study, the process of preparing heart and mind was not linear, and seemed to lack clearly recognizable stages or phases. This is a departure from classic theories on staged transitions to parenthood (Draper, 2003; May, 1982; Mercer, 1995, 2004; Rubin, 1976, 1984). Rubin’s (1976, 1984) tasks of pregnancy and the stages of Mercer’s (2004) contemporary theory of becoming a mother could occur, be omitted, or attended to, but not necessarily in a theoretically predicted sequence. Perhaps for both expectant mothers and fathers, the diagnosis catalyzed the expression of heightened psychosocial needs as well as affected their perceived abilities to accomplish the tasks and experience the normative stages.

Rubin’s (1976, 1984) tasks of pregnancy were evident in expectant parents’ reports in this study, although with some distinct differences. These tasks include safe passage through pregnancy, ensuring acceptance of and binding-in to the yet to be born child, and giving of oneself. Rubin described these tasks as psychologically woven together, with advances in each task turning maternal attention to the next task.

In this sample, we found variation in expectant parents’ investment in the tasks of pregnancy. Some claiming strategies exemplified binding-in as the work of the expectant mother’s internally directed motivation to form an emotional tie to her developing fetus (Rubin, 1976). With the perception of such an emotional tie, claiming could include the expectant mother’s intention to limit her negative emotions to protect the fetus, and both expectant parents’ ideas and efforts as advocates for the child in utero. Siddiqui and Hägglöf (2000) found that mental activities associated with binding-in, such as prenatal “fantasy” thinking about the infant, affection toward and interaction with the fetus, and perceptions of the fetus as a separate being, predicted higher-quality mother–infant interactions after birth. It is possible that claiming described in this article supports binding-in to the fetus and could promote higher-quality, adaptive parenting for a child requiring special care. More study is needed to link the strategies of claiming to the quality or adaptability of parenting after the birth.

Based on our findings, we also suggest that the tasks of pregnancy after a fetal diagnosis were not as closely linked as Rubin (1976) described for normative pregnancies. For some expectant parents the developmental tasks were either partially attended to or not attended to at all. For example, doing the routine pregnancy included the expectant parents’ psychological determination to become a parent by focusing on accomplishing the task of ensuring the acceptance of the child by others. At the same time, they prioritized combining additional medical tasks necessitated by the fetal diagnosis with the usual prenatal activities. For some expectant parents, the strategies of doing the routine focused on living with a complex pregnancy overshadowed the relationship with the fetus or future infant. For still others, delaying strategies appeared to interfere with addressing the tasks of pregnancy.

Despite uncertain infant outcomes, many expectant parents in this sample demonstrated prenatal commitment and attachment characteristic of the preparation stage of becoming a mother (Mercer, 2004). In contrast to the expectant mothers and fathers using claiming or doing the routine strategies to engage in activities related to the preparation stage, expectant parents using delaying strategies did not engage in this way because they anticipated a stalled transition to parenthood. Delaying strategies derailed many aspects of the initial stage of becoming a parent and could be considered counter to the development of parental caregiving. Underdeveloped caregiving has been associated with less sensitive parenting and problematic coparenting of infants with heart anomalies (Pridham, Harrison, McKechnie, Krolikowski, & Brown, 2014). Therefore, it is possible that having a child who requires special care could present more challenges to those parents who relied on delaying strategies before birth. More study is needed to understand how parenting most adaptively develops before and after birth in this population.

In addition to describing the experiences of the prenatal stage, some expectant parents described experiences similar to Mercer’s (2004) early postbirth stages of acquaintance, knowledge, and confidence in caregiving. Acquaintance involved learning about the offspring to discover family likenesses and bodily functioning. Serial fetal monitoring allowed expectant parents to learn about and track fetal growth and development in detail. Although nearly all expectant parents discussed change in fetal progress, it was the claiming strategies that extended how some expectant parents felt and thought about the physical and behavioral characteristics of the child in utero. Additionally, those who were using claiming or doing the routine strategies more often related their turning points to a belief that caring for this child would be manageable. This knowledge and confidence resulted from absorbing a wide range of information and observing or engaging others who were parenting children with similar medical conditions. These strategies also informed their postnatal planning and prioritizing.

Expectant parents also described aspects of Mercer’s (2004) latter two stages of moving toward a new normal and achieving an identity as parent. Protecting or recovering normalcy was the focus of doing the routine, requiring attention to the demands of maternal/fetal care and monitoring merged with the intentional experience of the usual prenatal activities. Expectant parents on the claiming trajectory, however, sought to make meaning of their situation differently, by determining what might be normal for them based on the stories of parents and their children who lived with the diagnosis. Some who were claiming also described a sense of belonging to a new community that advanced their thinking about already being a parent to a child (in utero) with a disability. Role models facilitating this new identity found through personal contacts or the Internet diverged from maternal role models in normative pregnancies that are usually associated with the family, such as one’s own mother, aunt, or older sister (Mercer, 2004).

Becoming a mother or father after a diagnosis of fetal anomaly, on any trajectory, involves activities that differ in character and extent when compared to a normative pregnancy. Assessing the psychological and developmental health of expectant parents after such a diagnosis using a normative staged model of parenting development could lead to inaccurate conclusions and possibly contribute to increased distress for expectant parents who already find themselves outside of the norm.

Expectant fathers tended to frame the transition to fatherhood as an experience that was steeped in medical issues (e.g., more fetal testing became a practical parenting decision). Some expectant fathers, however, relayed experiences similar to what Draper (2003) described as a stage in the transition to fatherhood of being in “limbo,” but in a more intense and sustained way. Being in limbo represented the perception of being distant from the pregnancy, on the margins of or entirely outside of the pregnant partner’s experience. For expectant fathers who were delaying, being in limbo and marginalized appeared to be amplified when they viewed clinicians as having “control,” with the necessary knowledge and skills to treat the maternal–fetal patient(s). Greater understanding of expectant fathers’ experiences of delaying is needed, and might include being in limbo or feeling marginalized in the medical setting after a fetal diagnosis. It is possible that symptoms of depression and anxiety contribute negatively to such experiences.

Given the scant literature we found on expectant fathers’ early transition to parenthood, we included the theoretical work of May’s (1982) phases of father involvement in pregnancy for comparison with our findings. She described a focusing phase during the third trimester of pregnancy that involved expectant fathers socializing about fatherhood. In contrast, the expectant fathers in this sample did not share prenatal experiences or discuss making social connections with friends or acquaintances, or in support groups. After the fetal diagnosis, they faced a time of isolation. Additionally, they struggled with extraordinary expectations from their family and clinicians to manage the increased appointments for prenatal care while trying to maintain their own life with full-time employment and coparenting responsibilities for their children. Under certain conditions, such as favorable fetal prognosis, emotional support, and reduced frequency of clinic appointments, some expectant fathers changed to doing the routine of pregnancy and began to socialize only about the normative aspects of fatherhood.

A cross-sectional study design was chosen to minimize participant burden, but this design decision limits study findings to the time following fetal diagnosis to before the birth. Longitudinal study designs extending beyond birth are necessary to understand both pre- and postnatal trajectories for these families. Other limitations include the disproportionate number of expectant mothers to expectant fathers that could have overrepresented women’s experiences. Although we designed the interview to intentionally draw out all participants’ experiences to assure optimal data collection (Arendell, 1997; Oakley, 2003), future studies would benefit from inclusion of more expectant fathers. Considering issues of recruitment, retention, and burden for future studies, expectant parents’ feedback suggests that electronic questionnaires and data collection timed to coincide with clinic appointments would be acceptable.

To minimize the potential for response bias, we realized the importance of building rapport early in the telephone contact, followed by a carefully chosen type, composition, and order of interview questions (Kvale & Brinkmann, 2009; Rubin & Rubin, 2011). The mood state of the participants and the sensitive nature of the personal and social aspects of becoming a parent could, nonetheless, have contributed to response bias. Although it is likely that some participants were distressed, such a mood state could be considered as a dominant feature in these expectant parents’ experiences. The low level or altogether declined participation in the study could be attributed to a perception that emotions and thoughts related to delaying strategies were socially unacceptable, thus restricting disclosure and exploration of these strategies. Additionally, perceptions of social acceptance might have prompted other expectant parents to emphasize doing the routine strategies. Our analysis, however, suggested more complexity in how they managed pregnancy with a diagnosis of fetal anomaly.

Conclusion

The findings of this study contribute to the understanding of how parenting develops in the context of pregnancy complicated by a diagnosis of fetal anomaly. Findings support the theoretical model that describes a core process of preparing heart and mind for becoming a parent following such a diagnosis. The model explains how expectant parents’ perceptions of fetal and future child health, experiences of loss, and social interactions influence the preparing process by triggering a turning point, or a different perspective, and prompted the development of certain strategies. These strategies, and the consequences of these strategies, clustered by how expectant parents experienced pregnancy and related to their offspring, and characterized three types of relational trajectories: claiming the child as one’s own, delaying the connection to the fetus, and doing the routine of pregnancy.

The relational trajectories reflect the expectant parent’s chosen course to adequately meet their emerging emotional and cognitive needs by employing strategies to attend to the prenatal care for the expectant mother and fetus, and anticipate postnatal caregiving for the infant. Change in an influencing condition (i.e., fetal/future child health information, experiences of loss, social interactions) often brought about additional turning points and altered trajectories during the pregnancy. Expectant parents also believed in the potential of future turning points and possibly altered trajectories in the process of preparing heart and mind for becoming a parent. These approaches to parenting can potentially pose risk to or support resiliency in the development of caregiving. Considering the risks to parent and child health that a fetal diagnosis poses, this theoretical model is valuable for future development of parent-centered assessments and interventions.

Research with a larger and more diverse sample is needed to extend knowledge of relational trajectories; their development over time; the association of child, parent, and social conditions with trajectories; and postbirth caregiving quality. Until such research findings are available, clinician inquiry of expectant parent and couple expectations and goals after a diagnosis of a fetal anomaly could be a beginning step in relating in a sensitive and responsive way to these patients.

Author Biographies

Anne Chevalier McKechnie, PhD, RN, IBCLC, is a postdoctoral fellow at the University of North Carolina–Chapel Hill School of Nursing in Chapel Hill, North Carolina, USA.

Karen Pridham, PhD, RN, FAAN, is the Helen Denne Schulte Professor Emerita at the University of Wisconsin–Madison School of Nursing in Madison, Wisconsin, USA.

Audrey Tluczek, PhD, RN, is an associate professor at the University of Wisconsin–Madison School of Nursing in Madison, Wisconsin, USA.