Twenty women were interviewed during pregnancy with six of these being interviewed for a second time after birth. The antenatal interviews had a mean length of 38 minutes and the postnatal interviews had mean duration of 25 minutes. Of these 20 women, 13 reported one previous stillbirth, three reported two stillbirths, three reported one neonatal death and one reported both a neonatal death and stillbirth. The number of children that women had given birth to ranged from one to eight. All women had a live born infant, the gestation at birth ranged from 29 weeks to 39 weeks of pregnancy. Fourteen women were White British, one was White European, one was Indian, one was Black African and three did not disclose their ethnicity. Eleven women were married or in a civil partnership, six were single and three did not record their marital status. Thirteen women were employed, one was a homemaker and two were unemployed, three did not disclose their employment status.
Following the inductive analysis, two themes were identified in the antenatal interviews to encapsulate the women’s experiences of their current pregnancy following previous loss(es): ‘It’s just such a quiet and unspoken subject’ and ‘Expect the worst, hope for the best’. Both themes included two subthemes each which are outlined below with excerpts from the interview transcripts to provide context. Within the themes, a number of expressed emotions were evident, these are presented below in the words used by the women in the interviews and thus are in italics.
Theme 1: ‘It’s just such a quiet, unspoken subject’ (Alice)
The women’s increased awareness of the risks in pregnancy due to their previous loss(es) of a baby influenced their experience in this pregnancy and as one woman called it ‘my reality’ (Hazel). Several of the women had experienced the death of more than one baby. Women reflected that as the death of a baby was not openly talked about in society they previously had low awareness. The resulting shock and guilt felt following their previous loss(es) carried through into this pregnancy and the women talked about the ways they protected themselves and their baby to attempt to create a state of normality. Their experience in subsequent pregnancies was noted to be different ‘I don’t really feel like a normal expectant parent’ (Sarah). Two subthemes described navigating their subsequent pregnancy: protective environment of clinic and a need to protect others.
Protective environment of clinic: A number of women described that attending the Rainbow Clinic in this pregnancy was reassuring as it offered a protected environment. Women felt protected in several ways. Firstly, they felt relief at not having to repeat their pregnancy story at each appointment and the negative emotions associated with talking through the details with different health professionals. Secondly, they felt they could trust the staff as they were being cared for by the same team of health professionals who had time for them and did not rush their appointment. It was acknowledged by all women that the Rainbow Clinic staff were experts, who could provide personal care to them, the link to the stillbirth research programme also increased confidence in the team. Being cared for by the same health professionals throughout their pregnancy was emphasised by a number of women as something that felt familiar and reduced stress. Thirdly, they felt they were not alone as they knew the other women at the clinic were in the same situation as them and they could relate to them. This also made them feel a ‘…sense of validation…’ (Jessie) as their situation was recognised by the staff and peers. However, this also felt daunting to some women due to an awareness of the sadness felt by all of the patients. Finally, the increased frequency of the appointments and the flexibility to arrange additional appointments if desired was valued by the women as it made them feel more relaxed. Being under the care of the Rainbow Clinic and in this protected environment led women to feel less anxiety and was referred to after birth as a ‘…security blanket…’ (Cassie).
‘It feels like with the Rainbow Clinic, the anxiety is cut out before it even has a chance to exist. It’s just more personalised care…’ (Hope)
‘It feels like we’re protected and we’ve realised that we are different, but it’s like our own personal space…’ (Chloe).
Conversely, women expressed general disappointment with postnatal care after hospital discharge and many highlighted a lack of any postnatal follow up from the specialist clinic. The necessity of focus on antenatal monitoring and support in subsequent pregnancy was recognised, but the lack of contact in the postnatal period left women feeling abandoned.
‘…I feel like you have built up a closer relationship…it was a bit weird never hearing or seeing them again after that…’ (Sarah).
Some of the women talked about the birth of their baby and milestones after this, reminding them of what they did not have with the child that they lost and they reported a negative impact on their wellbeing.
A need to protect others: The women acknowledged that their awareness of baby loss was not shared by others and they frequently mentioned wanting to protect other people who did not have this experience. They felt it was their responsibility to protect other people, especially partners, family and friends, from the negative emotions that they experienced.
‘It’s not just me that’s worried…it’s that ripple effect of this one thing affecting so many other people as well’ (Geordie Mama)
Women talked about their partners having little support and finding it difficult to express their feelings and the impact of these on their mental wellbeing ‘…men don’t speak about emotions really, he’s just like one of these everything will be fine and if it’s not, he’s one of these that deals with it when it does happen’ (Natalia). To protect close friends and family, women delayed telling them about their current pregnancy as they feared how they would cope with the new situation. Likewise, women avoided mixing with other pregnant women (such as standard antenatal classes) as they did not want to share experiences and expose them to the reality of loss and did not want them to feel uncomfortable if asked about their pregnancy story. Finally, some women wanted to protect the child they lost as they did not want their current pregnancy or baby to replace them, this led to feels of guilt,
‘I just felt guilty every time I got pregnant like I was betraying him, kinda thing’ (Natalie).
Theme 2: ‘Expect the worst, hope for the best’ (Alice)
As stated above, women were more aware of the risks due to their previous experiences and entered their current pregnancies with trepidation. This increased awareness of risks led to heightened levels of anxiety and fear at certain points in pregnancy including the period immediately before scans or appointments and the end of the pregnancy. Women felt responsible for their baby and felt mixed emotions about their pregnancy as a result of the fear of another loss. Many spoke of the desire to stop being led by fear and to stop feeling angry as this was disruptive to their wellbeing, to do this women engaged two approaches which are summarised in these subthemes: Control and hope.
‘I feel bad about it because like I’m so grateful to be in this position, but yeah I feel so bad because I’m so scared and so worried and upset’ (Lauren)
‘I want to move on and move forward’ (Geordie Mamma)
Control: Women felt responsible for their baby and they felt they had little control over their previous loss(es) so they attempted to exert control over their emotions and their behaviours in their current pregnancy. A few women outlined that they did not let themselves form a psychological and physical attachment with their baby, seeing them not give the baby a name or buy any items for their baby. The Rainbow Clinic offered them control as they were given more appointments and scans when they needed them which offered reassurance.
‘…all the reassurance that you do get has been fabulous. Knowing that if I need extra scans, if I need to come in and speak to someone, all I have to do is ring up…’ (Julia)
‘I can’t let myself get excited about it because you know, I don’t know you almost become disassociated with it because I think because you don’t really want to let yourself get too excited about it’ (Michelle).
Hope: Women wanted to have hope as they wanted to enjoy the pregnancy and this baby, however, this was challenged by their increased awareness of risk. Women expressed a mixture of feelings as their pregnancies progressed, some women felt more anxiety as they reached the gestation of their previous loss(es) and one mentioned feeling like they were ‘..walking a tight rope everyday..’ (Judith) until the end of pregnancy. Whereas, some felt more confident and hopeful in their pregnancy outcome. These mixed feelings in pregnancy saw many women supress feelings of excitement for the current pregnancy. Feeling movements of their baby for many women felt reassuring and gave them hope and the absence of movement was something that women reported as being anxiety provoking during the early stages of the pregnancy. When discussing partner’s feelings about hope, women outlined similar attitudes expressed by their partners.
‘…the first part you are anxious but…you don’t know what’s happening inside you…rely on the baby’s movements…’ (Sophia)
‘he’s [partner] warming up now but he’s always waiting for something to go wrong’ (Julia).
These mixed feelings led to many women not preparing psychologically and physically for their baby. The postnatal interviews saw participants reflect that they have not accepted what it would be like if they gave birth to a live baby which they took home with them. A few women reported seeking support from healthcare providers and also charities to support their postnatal preparation, but the rest of the women did not have any support and felt this was needed to enable them to both prepare psychologically and manage their emotions. Several women reported feeling anxious and panic about how to care for their baby as they had not allowed themselves to feel emotional attachment to a baby and had not attended any antenatal education groups.
‘…it was very, very difficult bringing him home and S [husband] and I cried a lot on the way home because we just got upset that we hadn’t had the opportunity to bring J home…’ (Geordie Mama)
‘…it [speaking to the counsellor] was more about talking through the emotions of what it would meant to hopefully bring home a, you know a baby, a health baby at the end of this given that had happened last time, how that was going to affect me, how it was going to bring things back…’ (Sarah)
Using a deductive approach, the themes and subthemes were mapped onto the Dual Process Model of Coping with Bereavement according to women’s expressed emotions and experiences of coping during their subsequent pregnancies. Since their loss, the women had been coping with their bereavement through their ‘everyday life experiences’. However, during these interviews the women were experiencing their bereavement during pregnancy, the life experience that was directly related to their loss and bereavement, this complicated the oscillation process between loss-orientation and restoration-orientation. Furthermore, they had an increased awareness of the risk of pregnancy loss which drew focus back to loss. This added element to the model sees women reliving the psychological and physiological state of pregnancy and all the time-specific events associated with this such as scans and baby movements (Fig. 1).
The emotions associated with theme 1 (It’s such a quiet unspoken subject) of shock and guilt were associated with the loss-orientation state. Whereas, the coping strategies used by the women across both themes (four subthemes) were located in the restoration-orientation. Theme one (expect the worst, hope the best) showed the journey of women from the loss-orientation state to the restoration-orientation state.
Social Return on Investment Analysis
The focus group discussions and interviews with parents, staff and stakeholders identified 14 outcomes of the clinic for quantification. The patient-related outcomes were: reduced healthcare costs, reduced experience of depression and anxiety during pregnancy, greater connection with baby, reduced isolation and a greater sense of control and ability to plan and reduced post-natal depression. The proportion of change related to attendance at the specialist clinic ranged from 64% for reduced postnatal depression through to 100% for reduced use of ultrasound or attendance with other health professionals (Fig. 2A). The social return on investment was calculated to be £1,358,400 compared to the cost of running the service of £223,958, giving a ratio of 6.10 (i.e. for every £1 invested £6.10 of benefit was derived). This was dominated by the value attached to the birth of a live baby (£499,944), if this value were subtracted, the total social return on investment was £858,456 giving a ratio of 3.81 (Fig. 2B).