Embodied experiences of prenatal diagnosis of fetal abnormality and pregnancy termination

Abstract

Pregnant women routinely undergo prenatal screening in Australia and this has become a common experience of motherhood. When prenatal screening or prenatal testing results in diagnosis of a serious fetal abnormality, women are presented with a decision to continue or terminate their pregnancy. Few recent studies have explored women’s psychosocial experience of prenatal diagnosis and pregnancy termination for fetal abnormality, and within this small group of studies it is rare for research to consider the embodied aspect of women’s experiences. This paper reports on qualitative findings from in-depth interviews with 59 women in Melbourne, Australia who received a prenatal diagnosis of a significant abnormality and decided to terminate the pregnancy. Interview transcripts were coded inductively through thematic analysis. Two themes about embodiment were generated from the interviews: transitioning embodiment, and vulnerable bodies in un/comfortable spaces. Theory of pregnant embodiment was drawn on in interpreting women’s narratives. Recommendations arising from the analysis include health professionals recognising, acknowledging and accommodating the transitioning embodied state of women as they consider, prepare for, undergo and recover from pregnancy termination for fetal abnormality. Further recommendations address the connections and disconnections between this transitioning embodied state and the spaces of clinics, hospitals and home.

Résumé

En Australie, les femmes enceintes font l’objet d’un dépistage prénatal systématique, qui est désormais une caractéristique ordinaire de la maternité. Quand le dépistage ou les examens prénatals révèlent une grave anomalie fłtale, les femmes doivent décider de poursuivre ou d’interrompre leur grossesse. Peu d’études récentes ont analysé l’expérience psychosociale des femmes face au diagnostic prénatal et à l’interruption de grossesse pour anomalie fłtale, et dans ce petit groupe d’études, il est rare que la recherche envisage la corporalité de l’expérience des femmes. Cet article relate les conclusions qualitatives d’entretiens approfondis avec 59 femmes à Melbourne, Australie, qui avaient reçu un diagnostic prénatal d’anomalie importante et avaient décidé d’interrompre leur grossesse. Les transcriptions des entretiens ont été codées de manière inductive par une analyse thématique. Deux thèmes sur la corporalité sont apparus dans les entretiens : corporalité en transition et corps vulnérables dans des espaces in/confortables. La théorie de la corporalité de la grossesse a été fondée sur l’interprétation des récits des femmes. Les recommandations émanant de l’analyse concernent les professionnels de santé qui doivent déceler, reconnaître et faciliter la corporalité en transition des femmes alors qu’elles envisagent l’interruption de grossesse pour anomalie fłtale, s’y préparent, la mettent en łuvre et en récupèrent. D’autres recommandations se réfèrent aux connexions et déconnexions entre cette corporalité en transition et les espaces des dispensaires, des hôpitaux et de la maison.

Resumen

En Australia, el tamizaje prenatal es realizado de manera rutinaria en mujeres embarazadas y es una experiencia común de la maternidad. Cuando el resultado del tamizaje prenatal (o examen prenatal de detección) es el diagnóstico de una anormalidad fetal grave, se le presenta a la mujer la opción de continuar o interrumpir su embarazo. Pocos estudios recientes han explorado la experiencia psicosocial de las mujeres con relación al diagnóstico prenatal y la interrupción del embarazo por anormalidad fetal. En este pequeño grupo de estudios, es raro que las investigaciones consideren el aspecto de corporalidad de las experiencias de las mujeres. Este artículo informa sobre los hallazgos cualitativos de entrevistas a profundidad con 59 mujeres en Melbourne, Australia, quienes recibieron un diagnóstico prenatal de una anormalidad significativa y decidieron interrumpir su embarazo. Las transcripciones de las entrevistas fueron codificadas inductivamente por medio de un análisis temático. Dos temáticas sobre la corporalidad fueron generadas de las entrevistas: corporalidad en transición y cuerpos vulnerables en espacios in/cómodos. La teoría de corporalidad del embarazo sirvió de base para interpretar los relatos de las mujeres. Entre las recomendaciones que surgieron del análisis figuran: profesionales de la salud reconocen, admiten y aceptan el estado de corporalidad en transición de las mujeres a medida que ellas consideran, se preparan para, experimentan y se recuperan de la interrupción del embarazo por anormalidad fetal. Otras recomendaciones analizan las conexiones y desconexiones entre este estado de corporalidad en transición y los espacios de clínicas, hospitales y el hogar.

Keywords:

• embodiment
• pregnancy termination
• fetal abnormality
• prenatal diagnosis and testing
• environment
• space

Introduction

Pregnant women routinely undergo prenatal screening in Australia and this has become a common experience of motherhood.¹ When prenatal screening or prenatal testing results in diagnosis of a serious fetal abnormality, women are presented with a decision to continue or terminate their pregnancy. While termination rates vary across countries and jurisdictions, in Victoria, Australia the majority of pregnancies diagnosed with a serious fetal abnormality are terminated.² Pregnancy termination in second trimester can be either a surgical procedure – dilation and curettage (D&C)/dilation and evacuation (D&E) – or a medical induction of labour. Few qualitative studies have explored women’s psychosocial experience of pregnancy termination for fetal abnormality.³ In this article, we provide an in-depth account of women’s embodied experiences of prenatal diagnosis and termination in Melbourne, Australia and consider the implications for healthcare professionals’ practice.

Termination for fetal abnormality (TFA): embodied experiences

Research reports drawing on qualitative data about psychosocial experiences of TFA have focused on women’s psychological and emotional responses,^4–6 women’s decision making about terminating the pregnancy and further decisions following the termination,^7–9 and women’s coping strategies and adjustment to loss.^10–13 Few recent reports have considered women’s embodied experiences during and following the events of prenatal diagnosis and subsequent termination.^10,14 Research with three women who experienced TFA shows that the women experienced a transition from being a pregnant woman to being a woman dealing with loss, but that future research was needed with a larger participant group.¹⁰ Scarce other research has pointed to the significance of spatial or environmental aspects of women’s experiences of care. A US study found that requiring women who are waiting to have TFA to share environments with women waiting to have caesarean sections can cause distress.¹⁴ A UK study found women’s preferences varied regarding whether they should have TFA in a gynaecological ward or a birthing unit and that denying women choice about this can contribute to distress.¹⁵

It is not uncommon for research reports on the psychological and emotional impact of TFA to include participant quotes that suggest the embodied nature of the experience. However, researchers have tended to interpret these descriptions as indicative of grief, trauma or psychological disorder,^16–17 rather than to explore the detail of women’s experiences of embodiment and the meaning they attribute to these experiences. For example, in a report on Israeli mothers’ experiences of TFA, one woman’s recount of her bodily experience is interpreted as suggestive of Acute Stress Disorder and its dissociative symptoms.¹⁶ In this article, we focus on women’s embodied experiences of TFA in order to add a further complementary dimension to current understanding of the psychosocial experience of prenatal diagnosis and termination.

The politicised and polarising nature of international critiques of pregnancy termination mean that the voices of women who experience TFA often remain unheard.^3,18 These critiques include the anti-abortion movement and the disability rights critiques of prenatal diagnosis and subsequent pregnancy termination decisions.¹⁹ Societal taboo and stigma about pregnancy termination arguably curbs public discussion about the experiences and care needs of women going through TFA. Our aim in reporting on women’s embodied experiences is to add detail and depth to healthcare professionals’ understanding of the experience of diagnosis and TFA, and to suggest recommendations as to how care provided to women who undergo TFA could be enhanced.

Research context: TFA in Melbourne, Australia

Women’s experiences of TFA are known to vary across cultural, legal and national contexts.³ Prenatal screening, diagnosis, and pregnancy termination are offered in private and public healthcare settings in Australia; there are no previous published reports of studies of women’s experiences of TFA in the Australian context. Termination methods vary between healthcare settings and practitioners, as do abortion laws in Australian states. In Victoria, an abortion may be lawfully performed by a doctor in any circumstance before 24weeks gestation. After this gestation an abortion can be lawfully performed if two doctors agree that it is appropriate.²⁰ In Victoria, genetic counsellors often provide ongoing care for women who receive a prenatal diagnosis.

Methods

The data reported here are a subset of data from a larger mixed methods study entitled Prenatal Testing: A Longitudinal Study (PeTALS), which is exploring women’s and couples’ experiences of prenatal diagnosis of fetal abnormality and their support needs. Participants were eligible for the PeTALS study if: they had recently received a prenatal diagnosis of a fetal chromosomal, single gene, cardiac or other structural abnormality; were aged 18years and over; and were fluent in English. There were three recruitment sites, selected to represent a range of experiences: two public hospitals and one private ultrasound clinic in Melbourne. Ethical approval was obtained from all sites and recruitment occurred between July 2012 and April 2015. Genetic counsellors approached all women in their care who met the eligibility criteria, gave written and verbal information about the study and invited them to provide their contact details for the researchers. Those who agreed to be contacted were subsequently telephoned by a researcher and given a full explanation of the study. Recruitment continued until no new perspectives were emerging in data analysis.

Data collection is occurring at three time-points: six weeks (time-point 1), six to nine months (time-point 2), and two years (time-point 3) after prenatal diagnosis of fetal abnormality. Time-point 1 interviews and analysis have now been completed with a total of 102 participants (women n=75; men n=27) who received a prenatal diagnosis of fetal abnormality and made a decision about termination of pregnancy. The time-point 1 interviews were performed as close as possible to six weeks after diagnosis, ensuring that women who had chosen to terminate their pregnancy had undergone the procedure at least two weeks earlier.

Interviews were conducted by telephone by members of the research team with genetic counselling qualifications and experience in conducting qualitative research interviews. The semi-structured interview invited participants to relate their story about receiving a prenatal diagnosis and the events that followed. Audio-recordings were made, with participant consent. The interview guide contained the broad topics of women’s experiences of: first finding out they were pregnant; becoming aware that something might be wrong; screening and/or testing; making a decision about continuing or terminating the pregnancy; formal and informal sources of support; care from health professionals. Follow-up calls were offered to all participants the day after their interview to check that the interview had not caused distress and to refer to a counsellor or support organisation if appropriate.

Audio-recordings of interviews were transcribed verbatim and de-identified. A member of the research team then reviewed the recording to check the accuracy of the transcript and amend any errors. The de-identified transcripts were imported into NVivo 10 (QSR International Pty Ltd, Melbourne, Australia) to manage the data for thematic analysis. A process of inductive coding was carried out by several members of the research team. This involved reading and re-reading the transcripts to look for similarities and differences in the experiences of participants. Sections of the text were assigned researcher-developed codes, transcripts were co-coded and emergent themes were discussed.

Here we report specifically on qualitative data generated from time-point 1 interviews with women who had a pregnancy termination. We draw on pregnant embodiment theory in interpreting women’s experiences of prenatal diagnosis of fetal abnormality and pregnancy termination. Feminist scholars have described the bodily experience of pregnancy as disrupting our understanding of subjectivity as singular and fixed.^21–22 Drawing on phenomenology, Young has suggested the pregnant subject is “decentered, split, or doubled” and “experiences herself as a source and participant in a creative process”.²² The embodied experience of pregnancy is understood to be influenced and shaped by medical practices and technologies. In particular, feminist scholars have argued that the development of medical technologies for prenatal screening has contributed to the conceptual separation of fetus and pregnant woman in the obstetrical view of pregnancy.^21,23–24 During the coding process, a number of codes pointed to themes of embodiment and we turned to the abovementioned literature on pregnant embodiment to inform the development of these codes into themes.

Results

In the larger PeTALS study, the research team was provided with contact details of 59 women and 61 couples who were potential participants. Of these, 39 women, 27 couples (interviewed as individuals) and a further 9 women who participated without their partner, agreed to be interviewed when contacted and were provided with further information about the study. Overall, 75 pregnancies are represented in the larger study, from a potential 120 pregnancies (62.5% participation rate). Of these 75 pregnancies, 59 women had a termination of pregnancy and the time-point 1 interviews (six weeks post diagnosis) with these women are the focus of this article.

Of the 59 women who terminated their pregnancy, 23 women were recruited from Tertiary Hospital 1, 20 from Tertiary Hospital 2, and 16 from the Private Ultrasound Clinic. Women were aged between 18-49years and had each received a confirmed diagnosis of a serious fetal abnormality at 10-21weeks gestation including: trisomy 21 (n=23), structural anomalies (n=10), other trisomies (n=9), other chromosomal anomalies (n=9), cardiac anomalies (n=5), single gene mutations (n=3). Whilst not all of the pregnancies were planned, all women described their pregnancies as “wanted” before receiving the diagnosis. Termination of pregnancy took place between 12-23weeks gestation. Of the 59 terminations, 35 were surgical terminations (D&C/D&E) and 24 were medical terminations (induction of labour). Telephone interviews ranged in length from 43 to 179 minutes.

Two key themes are presented below: 1. transitioning embodiment, and 2. vulnerable bodies in un/comfortable spaces. The words “fetus” and “baby” are each used to reflect the language used by individual participant women in interviews. Sometimes the term “fetus/baby” is used when discussing more than one participant woman to convey both differences in the ways women conceptualised their pregnancy and that this shifted over time for some women. Some quotes have been truncated without changing the meaning for ease of reading and this is indicated in the text by “……”. Pseudonyms have been used to preserve the participants’ anonymity.

Theme 1: Transitioning embodiment

Threatened pregnant embodiment

Women emphasised the physical bodily impact of receiving the news of a suspected or confirmed fetal abnormality. Becky explained that the day after her 12week ultrasound scan she received a phone call from her doctor disclosing a suspected abnormality:

“My whole body just went into shock and…..I was shaking and I dropped the phone.”

Women commonly used metaphors of physical trauma and devastation caused by an undiscriminating exterior force. Lydia described receiving the result of her CVS:

“I got a phone call and we found out the baby had Trisomy 21. It was……just a blast. You’ve been dropped this bomb.”

Melinda, who had previously terminated a pregnancy for a fetal abnormality, described receiving the news at her 12week scan that her current pregnancy had abnormalities as “looking down the barrel of another termination”. Women experienced their pregnant embodiment as threatened by the disclosure of abnormality, and for many this marked the start of their shift away from pregnant embodiment.

In-between embodiment

Women described how difficult it was for them to continue to experience the physical changes of pregnancy and the movement of the fetus/baby after having made the decision to terminate the pregnancy. Kylie expressed her distress at being physically reminded of her pregnant embodiment whilst preparing to undergo a termination:

“I’d just felt the baby moving and I thought, ‘What type of mother am I, who wants to kill her child?’.”

Young suggests a key aspect of pregnant embodiment is a woman’s “bodily self-location” being “focused on her trunk in addition to her head”.²² It was common for the women to describe how they deliberately turned their focus away from their “trunk” during the period of decision making and waiting for pregnancy termination. Some described how they avoided looking in mirrors at this time as they didn’t want to see their pregnant body reflected back at them. Many women, including Georgia, described ultrasound scans as very difficult after having made the decision to terminate:

“[The health professional] said, ‘If you want we can do another scan and show you things’, but at that stage both me and my husband couldn’t bear to see his heartbeat again.”

Georgia’s experience can be interpreted as disengaging from a normative pregnant embodiment of focusing on her trunk. There were a few women in our study, however, who sought out additional ultrasound scans in order to repeatedly confirm the diagnosis and to see the abnormality. Whilst visualising the fetus/baby and abnormalities on the screen was emotionally difficult for these women, it assisted them to decide that a pregnancy termination was the right course of action for them.

Women’s narratives of the period of decision making and waiting to have a pregnancy termination suggested they experienced themselves as no longer living a normative pregnant embodiment but as not yet living a “no longer pregnant” or “post-termination” embodiment. Rochelle described her experience at this time as like being in “limbo-land”. Several women used the metaphor of “robot” to describe how they disconnected from the fetus/baby during the decision making and waiting period. Louise described the two-and-a-half weeks between diagnosis and feticide as an “in-between stage”:

“I ended up quite disconnected. I was walking around able to cope, managing quite well……I almost felt cold. I put myself in this state of mind……so I was robotic, I was disconnecting from the baby.”

Louise, like many of the women, turned her focus away from her “trunk” to her head during this period. For a few women, disconnecting from the fetus/baby after deciding to terminate involved consuming food and substances they had previously eschewed whilst living a pregnant embodiment. Alcohol and other drugs became a way to move away from pregnant embodiment and to numb the pain of living an in-between embodiment.

Beginning the end

Women described how physically taking the medication to begin the termination process was experienced as an ending; a point of no return when they “said goodbye” to the fetus/baby. Dianne explained what it was like to take the tablet as the first physical step in her pregnancy termination:

“It was the longest time I swirled [the tablet] around on the table……I knew that once I had taken the tablet it was the beginning of the end, so it was very, very hard for me to take that tablet.”

Similarly, Suzanne described how the physical action of inserting vaginal pessaries in preparation for her termination was:

“the hardest part of the whole experience because......it was me initiating that. It wasn’t like the doctor doing it, it was me……It was really like I was physically starting this thing. I would’ve liked the doctor to have done that.”

Those women who were administered the medication to begin the termination by a health professional also experienced this as a significant moment. Melinda, who had a surgical termination, described her response to having the pessaries inserted:

“I was so scared……and that’s when it all became really real for me, when they put the [pessaries] in to start the termination……That’s when it all hit me.”

This significance for women of taking medication to begin their pregnancy termination is rarely noted in recent previous studies, with an exception being research with six women in Sweden.²⁵ When pregnant, the delineation of what is part of a woman’s body and what is separate to her is blurred.²² This embodiment changes when women take the first medication to facilitate the termination; the medication begins the physical process of the separation of the fetus from the woman’s body. Those women who were required to self-administer the medication struggled with their agential role in physically ending the entwined relation of their body with the fetus/baby’s body.

Separating

One of the most difficult parts of the experience of TFA described by many of the women who went through induction of labour was their final physical separation from their deceased fetus/baby. Georgia narrated how post-mortem changes in her baby’s appearance led her to think:

“We need to go home……I wanted him [to come] home too……I never wanted to leave but I couldn’t stay there forever……The hardest thing you’ll ever do is leave your baby there.”

Similarly, Patricia was distressed by the need to physically move away from her deceased fetus/baby, to create distance between them:

“We went home......That was the worst week because I knew that he was here, but he wasn’t with me. It’s so unnatural……it’s not what a mother should go through. He was in the morgue......We were here and he was there and we weren’t together. I really struggled with that.”

Patricia contrasts her physical separation from her deceased baby with a woman’s normative experience following the birth of a live baby as one of continued physical closeness.

Post-termination embodiment

The days or weeks women spent at home following the termination entailed a period of adjustment to no longer being noticeably pregnant. Audrey described the first week after returning home:

“When you’re pregnant, you touch your tummy…..[In the first week] I found myself touching my tummy and I suddenly realised while I’m touching my tummy, ‘I’m not pregnant anymore’……and it’s hard.”

Similarly, the first menstrual period after the termination was experienced as distressing for some women. Lydia stated that several weeks after her termination:

“I was really, really upset……because I got my period, which is a sort of visual reminder (crying).”

Some women described how the aspects of their pregnant embodiment continued for weeks after their termination of pregnancy, making it difficult to “move on”. For some women, this was because they were found to have retained products of conception and needed to undergo a procedure to remove these. For other women, this was because their breasts were leaking colostrum and their body shape and weight had changed as a result of their pregnancy. Weeks after her termination, Caitlin explained:

“I feel like I’m carrying all this weight, but I don’t have a baby to show for it. And so sometimes I find that I’m……wanting to move on quickly, but physically I’m not there yet.”

We can read “moving on” as transitioning from a post-termination embodiment to a non-pregnant female embodiment.

The gradual nature of women’s embodied adjustment to no longer being pregnant was not always understood or acknowledged by health professionals who categorised women as simply pregnant and not pregnant. Olive had an appointment to see her doctor which had been booked when she was pregnant:

“I thought, ‘I’ll just leave that appointment so then I can have a check-up and speak to him’. One morning I called and spoke to the receptionist just to confirm my appointment and she said, ‘Oh, it’s been cancelled’. I said, ‘Why?’ And she said, ‘You’re not pregnant anymore. That’s an antenatal appointment’……I hung up and I was really upset……She knew what had happened.”

Olive experienced an abrupt switch from being categorised and treated as a pregnant woman to a non-pregnant woman. This did not reflect her lived state of post-termination embodiment.

Theme 2: Vulnerable bodies in un/comfortable spaces

Many women indicated a heightened sensitivity and vulnerability of their body within physical environments such as ultrasound rooms, clinician and counsellor consulting rooms, hospital waiting areas, labour wards, private abortion clinics, and home. This was evidenced in the words and metaphors women used to narrate their experiences. The materiality of environments played a role in shaping women’s embodied experiences of diagnosis and termination.

Out of place in clinics and hospitals

Women described feeling out of place in the foyers and waiting areas of clinics and hospitals on the day/s of disclosure of fetal abnormality and on the day/s of pregnancy termination. Grace described attending a hospital for a genetics appointment after an abnormality was disclosed to her by phone:

“As soon as you get [to the hospital], you’re confronted by bouquets of flowers and little teddies and ‘It’s a girl!’ balloons, things like that. When everything’s very raw, it’s quite confronting to see all that sort of baby paraphernalia all over the place and happy women and little babies….. It was very uncomfortable.”

Women appreciated it when health professionals recognised the distress caused by the hospital foyer and waiting areas and provided speedy passage through uncomfortable spaces. Georgia said on the day of her termination:

“[The midwife] said she would meet us at [the hospital entrance] and take us straight through so we didn’t have to sit around with everyone.”

Women described how being required to wait for both ultrasound scans and their termination in general waiting areas added to their discomfort and distress. Narelle, who had a termination in a hospital, stated:

“The thing that bothered me was the way the room was arranged. Where I was sitting I was facing all the women who were coming in to have their C-sections……watching all the big pregnant women come with all their suitcases.”

Hailey suggested a reconfiguration of hospital waiting areas could alleviate some of the negative impact of the experience:

“I think that’s definitely something that could be improved…… to physically separate those areas.”

Women who attended a private termination clinic described their distress at having to share a waiting area with women having terminations for reasons other than fetal abnormality. Hailey stated:

“Mentally it was really hard and I don’t think anyone should ever have to do that (sigh) in our situation……You sit there with all these women who are pregnant who don’t want to be pregnant and I’m sitting there wanting my baby.”

Women whose termination procedure involved feticide and induction of labour described what it was like to prepare to deliver a deceased baby within the same labour ward as women delivering healthy babies. Dianne described her response to the physical space of the labour ward on the day of her termination:

“I didn’t realise I was going into the actual labour ward where there were babies being born……I thought there might have been a separate area for people who had to terminate…..I had a bit of a panic attack. Then the nurse put us into a waiting room…..and then another nurse actually brought into that room a brand new newborn baby. I lost my mind.”

Palpable in these quotes is the exacerbation of distress women experienced as a result of the built environment of hospitals and clinics. These environments require women who have received a diagnosis of fetal abnormality to share waiting areas with the general public and with women waiting to see health professionals about their “normal” pregnancies. They require women to share treatment spaces with women having terminations for reasons other than fetal abnormality, and with women delivering live healthy babies.

Home as place of sanctuary, isolation and remembrance

In the weeks following pregnancy termination, the women experienced home as a place of both sanctuary and isolation. Some women narrated how they felt they wanted to return home as soon as possible after the procedure/delivery. Fiona described how the emotional and physical contours of the room in which she delivered her (deceased) baby drove her desire to return home:

“There was a lot of trauma in that room. Obviously it’s where we got to spend time with our [baby], but there was a lot of trauma in there……We both really felt that if we could get home…..we could start healing.”

Home was a place where women felt they could retreat from the world to recover after the termination. For some women, home also became a place of isolation, particularly once their partner returned to work. Lucy stated:

“I just retreated really from the whole world, I didn’t go to work….I basically spent those two weeks at home, just waiting for my partner to come home at night and honestly that was it, he was the only person I saw for two weeks. I couldn’t even see my family, I just didn’t want to explain what was happening. All up, it was probably about five weeks where I just shut myself away, didn’t see anyone, other than my partner.”

Some women described the spaces of remembrance they created within their homes. It was common for women to keep a memory box of objects relating to their baby and their pregnancy in a cupboard in their home. These boxes contained items such as photos of the baby, the baby’s handprints or footprints, blanket, booties, cards from family and friends, ultrasound images and DVD, remaining folic acid tablets, and letters about the pregnancy. Women could choose when to handle the memorial objects. Some women also displayed memorial objects by which to remember the baby. Deborah explained that the hospital where she had the termination gave her booties to take home:

“I still have the booties on my bedside table, I can’t let go of them just yet.”

Audrey told us she created a visual display in a more public area within her home:

“I want people to know that I have a baby (crying)……We have a family picture (crying), I’m holding the baby and my husband’s kissing my baby’s head. It’s hanging in the living room.”

Women generally reported appreciating being offered the opportunity to create mementos such as photographs and footprints of the baby. However not all women wanted mementos; some women were concerned about the impact on themselves and their family members of encountering mementos in their home in the years ahead. Grace stated:

“I didn’t feel I needed to keep anything because I’ve still got memories (crying)……Also I didn’t want to keep stumbling upon things down the track and I didn’t want my children to find things.”

Returning to sites of devastation

Women described returning to the clinics and hospitals where they had first learnt of the indication or diagnosis of fetal abnormality, or had their termination, as an emotionally charged experience. Some women told us they avoided or delayed returning for follow-up appointments to these physical sites. Grace described what it was like to drive past the place where an ultrasound scan had led to a diagnosis:

“Going past that scan building is just (sigh) horrible. It’s quite traumatic for us to go back and see the same building.”

Women sometimes anticipated what it might be like to return to the place where they had the termination for their future pregnancies. Dianne described mixed feelings at being told she was unable to have the termination at her usual hospital and had to go to a second unfamiliar hospital:

“That was a bit overwhelming……but I also looked at the good side, that if we ever did get pregnant again, I could go to [my usual hospital] without having those feelings of being in the labour ward and delivering a stillborn baby.”

Discussion

We have suggested thinking about women who receive an indication of significant fetal abnormality as experiencing “threatened pregnant embodiment” and as at the threshold of a likely transition to “in-between embodiment” and “post-termination embodiment”. We have detailed how women’s experience of prenatal diagnosis and termination for fetal abnormality involves transitioning between different embodied states. These findings contribute an additional complementary dimension to current understandings of the psychosocial experience of prenatal diagnosis and termination for fetal abnormality reported in the small body of literature in this area.

For the women in our study, the environments of the clinics and hospitals they attended were often not appropriate to their psychosocial needs. We found that physical and social dimensions of these environments often appeared to add to women’s distress. This finding is consistent with limited previous findings in USA¹⁴ and England.¹⁵ Our findings build on this previous research in describing women’s experiences across a range of clinical settings, and in describing women’s experiences of feeling “out of place” not only on the day of the termination but also at the appointments both preceding and after it. The spaces of clinics and hospitals contribute to the production of the events of diagnosis of fetal abnormality and termination as unusual and outside the normal practice of these institutions, and the marking of the women who experience these events as different or other.

Consideration by healthcare professionals of both the transitioning embodied state of women as they consider, prepare for, undergo and recover from diagnosis and termination, and the connections and disconnections between this transitioning embodied state and the spaces of clinics, hospitals and home, is needed. We recommend that healthcare professionals recognise and acknowledge the difficulty of the transition from pregnant to no-longer-pregnant embodiment and accommodate this within their clinical practice. Our findings also suggest that healthcare professionals should acknowledge the moment of taking the medication to begin the termination as very difficult. It is experienced by many women as “beginning the end” of their pregnancy. Healthcare professionals could offer extra empathic support at this moment.

Measures to minimise and alleviate women’s discomfort in the environments of clinics and hospitals should be taken wherever possible. A woman can be met at the hospital entrance by a health professional and guided directly through to a private room. Separate waiting areas can be set up for women attending clinics and hospitals for appointments following indication of fetal abnormality and appointments for termination. Through these care protocols, women attending for these reasons would not be required to share space with the rest of the maternity population or with women preparing for and undergoing terminations for reasons other than fetal abnormality. For many women, returning to the physical site where they received bad news or the site of the termination can be difficult. Given the impact of such “sites of devastation” on women, as well as the uncomfortable experience of post-termination embodiment, we suggest enabling women to have a choice about where they receive follow-up care. Rather than requiring women to return to the site of devastation, telephone follow-up could be offered. During the telephone follow-up, the offer of a home visit could be extended to women as appropriate. Healthcare professionals can provide women with individualised options about the environment/s in which they receive follow-up care and support.

A limitation of the study was the linguistic homogeneity of the participants: the women all spoke English. The extent to which these findings are relevant to women of diverse cultural and linguistic backgrounds is unknown. However, the study was bolstered by the participation of women who attended both public and private healthcare settings.

Our findings suggest that developing care protocols that aim to accommodate women’s transitional embodiment and to minimise the negative impact of physical spaces of clinics and hospitals, could lead to the alleviation of some of the additional distress and discomfort experienced by women at the time of diagnosis of fetal abnormality and pregnancy termination. Research in this area remains limited and there is a need for further research looking at variations in the care needs of women and how these needs relate to particular characteristics such as specific diagnoses.

Acknowledgements

We gratefully acknowledge the women who generously shared their stories with the research team. We would like to thank the genetic counsellors who took the time and effort to assist with recruitment as well as all the members of the PeTALS project team.

The research was funded by the Australian Research Council (ARC) Grant ID DP120100092, the Shepherd Foundation, the Murdoch Childrens Research Institute, and is supported by the Victorian Government’s Operational Infrastructure Support Program.