Care in pregnancies after stillbirth and perinatal death
Stillbirth and perinatal death are associated with psychological, social and economic costs for parents.
Alexander E P Heazell, Maternal and Fetal Health Research Centre, School of Medical Sciences, Faculty of Biology, Medicine and Health, University of Manchester; St. Mary’s Hospital, Central Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK
Aleena Wojcieszek, NHMRC Centre of Research Excellence in Stillbirth, Mater Research Institute – The University of Queensland (MRI-UQ), South Brisbane, Australia
Nicole Graham, Maternal and Fetal Health Research Centre, School of Medical Sciences, Faculty of Biology, Medicine and Health, University of Manchester; St. Mary’s Hospital, Central Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK
Louise Stephens, St. Mary’s Hospital, Central Manchester University Hospitals NHS Foundation Trust; Manchester Academic Health Science Centre, Manchester, UK
Stillbirth and perinatal death are associated with psychological, social and economic costs for parents. These may affect pregnancies after stillbirth and perinatal death, which already confer increased risk of obstetric complications. A previous stillbirth or perinatal death profoundly alters the experience of pregnancy, birth and the postnatal period for mothers and their families. Routine antenatal care is not able to meet these additional medical and psychological needs. Although the experience of care varies, women value continuity of care within specialised services which acknowledge the co-existence of positive and negative emotions, allow women and their families to form positive coping strategies and provide reassurance through assessment of fetal wellbeing. Access to specific interventions may reduce the risk of some obstetric complications. This article presents evidence to guide care providers when caring for women in pregnancies after stillbirth or perinatal death, and describes a specialist service currently providing such care in the UK.
Stillbirth describes the death of a child before birth; the definition of stillbirth as opposed to miscarriage (which usually describes an earlier pregnancy loss) varies between (and in some cases within) countries. In the UK, stillbirth is defined as a child born with no signs of life after 24 weeks’ gestation (Stillbirth Definition Act, 1992). Applying a later definition of 28 weeks’ gestation, it is estimated there are 2.6 million stillbirths worldwide per year, 98% of which occur in low and middle-income countries (Lawn et al., 2016). In the UK, there are over 3,000 stillbirths per year, and the UK ranks 24th out of 49 high-income countries (HICs), indicating that improvements are required to reduce the rate of stillbirth (Flenady et al., 2016). The term perinatal death is sometimes used interchangeably with stillbirth, but in the UK context, this term describes babies who are stillborn or who die in the first week of life. Perinatal deaths are sometimes grouped together because of the similarities in parents’ experiences when a baby dies before or shortly after birth. There are approximately 4,000 perinatal deaths in the UK per year, an approximate frequency of one in 200 births (Manktelow et al., 2015). Therefore, it is highly likely that care providers will encounter a significant number of families who have experienced a perinatal death either following the death or in subsequent pregnancies. This article focuses on care in pregnancies following perinatal death.
Stillbirth and perinatal deaths have considerable psychological, social and economic impact for parents (Heazell et al., 2016). In a series of UK studies (Redshaw & Henderson 2015; Redshaw et al., 2014; Evans et al., 2012), 35% of bereaved mothers and 13% of bereaved partners reported four or more negative psychological symptoms nine months after the birth, over three times greater than after a livebirth, when 8–13% of mothers and 3% of fathers report depressive symptoms at a similar time point. A failure to acknowledge the impact of the death of parents’ baby can lead to disenfranchised grief, which refers to grief that is not legitimised or accepted by health professionals, family, or society. This grief may be compounded by social isolation and a lack of peer support, as parents report stigma associated with the death of a baby (Heazell et al., 2016). Importantly, the psychological impact of stillbirth and perinatal death extends into future pregnancies and beyond, with effects observed in parent-child interactions.
Not acknowledging the impact of the death of a baby can lead to disenfranchised grief
In comparison to descriptions of the psychological and social effect of stillbirth, there are few studies of the economic impact. One recent cost of illness study found that the average health and social care costs per stillbirth were £4,191 (Campbell et al., 2018). Additionally, funeral-related costs were £559, and workplace absence (for parents and healthcare professionals) was estimated to cost £3,829 per stillbirth (Campbell et al., 2018). An earlier exploration of healthcare costs associated with stillbirth found that a significant proportion of the cost was associated with provision of additional care in a subsequent pregnancy (Mistry et al., 2013). The profound psychological and economic impact of stillbirth or perinatal death on subsequent pregnancies has prompted increased research and attention in this area, and an international consensus statement on care in pregnancies after stillbirth has recently been published (Ladhani et al., 2018).
Rationale underpinning need for specialist care in pregnancies after stillbirth or perinatal death
Pregnancy following stillbirth or perinatal death has increased risks of adverse biomedical and psychosocial outcomes. In the Lamont et al. (2015) systematic review and meta-analysis of 16 studies including 3,412,079 pregnancies, stillbirth occurred in 2.5% of women with a previous history of stillbirth, compared to in 0.4% of women whose previous pregnancy resulted in a livebirth, equating to a 4.8-fold increased risk of stillbirth. This compares to established risk factors such as smoking (~2x increased risk), obesity (1.7x increased risk) and diabetes (~3x increased risk) (Heazell et al., 2018). A smaller study from the Grampian region of Scotland found that a history of stillbirth in the first pregnancy also increased the risk of other pregnancy complications such as pre-eclampsia (by 3x), placental abruption (by 9.4x), low birth weight (by 2.8x) and prematurity (by 2.8x) (Black et al., 2008). Consequently, the Royal College of Obstetricians and Gynaecologists (2011) recommends obstetric-led care and birth for the majority of women pregnant after perinatal loss, due to the increased risk of recurrence of perinatal death or related complications. However, there are currently no specific guidelines regarding the management of pregnancy after perinatal death from other professional organisations (e.g. Royal College of Midwives, Institute of Health Visiting). The aim of obstetric care in these pregnancies is to institute preventative treatment (where possible) and increased frequency of antenatal surveillance to detect complications earlier in order that birth may be appropriately timed.
In addition to the biomedical complications, parents’ experience of pregnancy after stillbirth or perinatal death is profoundly altered. A meta-synthesis (Mills et al., 2014) of fourteen qualitative studies described three main themes relating to parents’ experiences of subsequent pregnancy: co-existence of emotions, helpful and unhelpful coping activities, and seeking reassurance through interactions. Parents describe being happy to be pregnant again, but fearful of having another stillbirth or perinatal death, with women doubting their ability to have a healthy child. These feelings could isolate parents from friends and family, who may incorrectly assume that a subsequent pregnancy would help bereaved parents to ‘get over’ the death of a previous baby.
Fathers increase their involvement in pregnancies after perinatal death
One coping strategy parents reported was delaying attachment to the baby, to reduce the emotional investment in case the baby died. Another coping mechanism was to exert more control in the pregnancy, by being more assertive with health professionals (fathers in particular increased their involvement in pregnancies after perinatal death). This exertion of control may be evident in seeking interactions with care providers. Parents did gain some reassurance from ultrasound scanning, but scans were often preceded by high levels of anxiety, as fetal death in their previous pregnancy was likely confirmed by an ultrasound scan. Further, feelings of relief following scans were often short-lived. Mills et al. (2014) noted that normal antenatal findings provided limited reassurance but that additional support was highly valued, as was continuity of care provider. The findings of this meta-synthesis suggest that routine antenatal care is unable to meet the additional needs of parents in pregnancy/ies after perinatal death.
Parents’ experience of care in pregnancy after stillbirth or perinatal death
Between 50% and 66% of parents conceive again within a year of the death of their baby (Wojcieszek et al., 2018; Mills et al., 2016). An international internet-based study (Wojcieszek et al., 2018) of 2,716 parents from 40 high and middle-income countries found that the majority of respondents were offered additional antenatal appointments and ultrasound scans (67% and 70% respectively). However, there was less access to psychological support, with only 10% of respondents reporting additional visits to a counsellor. Importantly, only about half of respondents felt that the care they received was consistently respectful and of high-quality. In a survey of 547 women who had a pregnancy after a perinatal death in the UK, 75% were offered additional ultrasound scans, and 80% were seen by a consultant obstetrician (Mills et al., 2016). Nevertheless, 20% of respondents preferred to have been seen more often. Importantly, the majority of women sought care through maternity health professionals, their GP, or other health services in addition to their planned antenatal care, which suggests that the planned care did not fully meet their needs (Mills et al., 2016).
The survey by Mills et al. (2016) identified four important influences on care in pregnancy after perinatal death:
• sensitive communication and conduct of staff
• appropriate organisation and delivery of services
• increased monitoring and surveillance
• perception of standard vs. specialist care.
Sensitive communication included the use of the previous baby’s name, awareness of the specific history and acknowledgement of the stress parents experience in pregnancies after loss. Parents valued continuity of carer, as this removed the need for them to repeat their story to each new member of staff and limited insensitive communications (e.g. asking, ‘Is this your first baby?’) Parents also valued the opportunity to develop trusting relationships with staff, which is particularly important if the preceding perinatal death resulted from sub-optimal care and adversely affected parents’ trust in health care staff. Parents noted that having a history of stillbirth or perinatal death excluded them from standard antenatal education, as they didn’t wish to discuss their history with other parents, and/or were concerned that the content of classes would not be appropriate for them. Several respondents would have liked more targeted antenatal education and emphasis on preparation for the birth (Mills et al., 2016). Some parents valued the opportunity to meet other parents with similar experiences through a pregnancy peer support group, and some reported using online resources (e.g. https://pregnancyafterlosssupport.com/).
Developing specialist care for pregnancy after stillbirth or perinatal death
A Cochrane review (Wojcieszek et al., 2018a) of care during subsequent pregnancies following stillbirth to improve outcome highlighted the paucity of evidence from randomised controlled trials to guide clinical management. This review included data from 10 randomised controlled trials including a combined total of only 222 women. Therefore, the review was unable to determine whether the interventions evaluated were of any benefit or harm to women and their babies. The evidence assessed related only to pharmacological interventions to reduce the risk of adverse outcomes. Importantly, there were no studies of psychological or support interventions to improve outcomes for women or assessment of long-term outcomes for mothers and babies. Therefore, care in these pregnancies is currently informed by observational data as outlined above and information from existing services.
Based on the limited data available, care that is provided in the context of previous loss, where providers are aware of and understand parents’ history, and have specific experience/expertise in providing such care, appears to provide significant comfort to parents (Cote-Arsenault et al., 2014; Caelli et al., 2002). Specialist services for pregnancies after loss incorporate many of these elements of care and have been well received among parents (Meredith et al., 2017). However, there are few such specialist services. To address this need, we established a specialist antenatal service (Rainbow Clinic) at our tertiary maternity unit in 2013 and have now seen over 700 families. The structure of the service was initially based on the data reviewed here and has been refined using quality improvement methods, such as a questionnaire to record parents’ experiences, with the aim of continually developing the service.
(a) Antenatal care in subsequent pregnancy
A typical patient journey through a subsequent pregnancy under the care of the Rainbow Clinic is shown in Figure 1.
From a medical perspective, women who have a history of stillbirth should be referred for consultant-led care and a plan of care made with the mother in early pregnancy. Care should be individualised depending upon the cause of stillbirth; efforts should be made to obtain the results of any investigations to ensure appropriate treatment can be commenced. Care in subsequent pregnancies should also include screening for established risk factors such as smoking and gestational diabetes. As women who have had a stillbirth are at increased risk of giving birth to a small for gestational age (SGA) infant, they should have ultrasound measurements of fetal biometry on multiple occasions. Serial fetal biometry is more useful than a single measurement of fetal size, as the growth velocity plotted on a growth chart has the best detection rate for SGA and fetal growth restriction. However, care providers should remember that, as stated earlier, ultrasound scans often prompt high anxiety and the reassurance they provide is usually temporary.
Of the interventions assessed in the Cochrane Review (Wojcieszek et al., 2018a), and drawing on the broader evidence base, antiplatelet agents appear to be the most promising medical therapy for women in a pregnancy after stillbirth, depending on the cause and other relevant clinical factors. Meta-analyses suggest that among women at risk of pre-eclampsia, low dose aspirin (LDA), usually 75-150mg per day, commencing at or prior to 16 weeks’ gestation, reduces the risk of pre-eclampsia and other adverse outcomes including growth restriction, preterm birth, and perinatal death (Roberge et al., 2013; Bujold et al., 2010). Consequently, LDA, commenced early in pregnancy, is recommended during pregnancies after stillbirth for women at risk of placental insufficiency (Ladhani et al., 2018). There is some indication that low-molecular weight heparin (LMWH) may reduce the risk of placenta-mediated complications among women with a history of placental abruption (Rodger et al., 2016), but further evaluation is needed. For women who have recurrent pregnancy loss and antiphospholipid antibodies, unfractionated heparin (UFH) combined with aspirin may increase rates of livebirth when compared to aspirin alone (Ziakas et al., 2010). Importantly, the possible differential effects of LMWH and UFH for the treatment of antiphospholipid antibodies are not clearly understood and require further research (Duffett & Rodger, 2015).
(b) Psychological Support
When evaluating the Rainbow Clinic, a word cloud formed from the free-text responses to the patient experience questionnaire highlighted key aspects of care for parents (Figure 2).
From a psychological perspective, parents should be cared for by a small team of experienced professionals who provide focussed support (Meredith et al., 2017; Mills et al., 2016). In particular, parents report that the use of a sticker to highlight their previous history to other members of the maternity care team is helpful. Eighty-three per cent of respondents to a survey of women attending Rainbow Clinic suggested the sticker helped to prevent staff from making mistakes, such as not knowing that their last baby had died. Where possible, care should be planned with parents to increase their sense of control, with the timing of appointments individualised for parents’ circumstances. For example, when a baby has died at a specific point in a previous pregnancy, some parents will benefit from an additional scan and support around that time, whereas others would prefer not to have a scan at that point unless it is clinically indicated.
Qualitative data suggest peer-support may be beneficial in pregnancies following perinatal death (Cote-Arsenault & Freije, 2004; Caelli et al., 2002) and may play a crucial role in providing flexible and responsive psychosocial support alongside specialist medical care, though formal evaluation is needed.
Parents may benefit from making specific plans regarding the birth of their baby including the mode and timing of birth, and regarding details such as the location (e.g. avoiding birthing rooms where a previous baby has died). Our experience is that the majority of parents accept the offer of a birth plan, usually drawn up with the specialist clinic midwife at 36 weeks’ gestation. The plan is typed and filed at the front of the hospital notes in order to reduce anxiety and aid staff in understanding parents’ needs at the birth. A tour of the birth unit is offered, accompanied by the midwife known to the family. Familiarising the parents with the birth environment and introducing staff helps to relieve anxiety especially if the previous place of birth was at another maternity unit. This level of communication often requires additional time in appointments which needs to be considered when planning care. In the event of an elective caesarean section, plans can be made for families to utilise a pager system in order to avoid difficult conversations with other parents whilst awaiting surgery. This system enables parents to leave the department and to return when the theatre team is ready. Patient feedback has also led to education and support being given to the theatre team to improve understanding of the needs of parents at birth after loss.
The timing and mode of birth in pregnancies after perinatal death has received limited study. An audit (Cote-Arsenault & Freije, 2004) concerning elective induction of labour has been conducted in South Africa among 134 expectant women with a previous unexplained or unexplored stillbirth. This study found that, among the 92 women who developed no obvious indication for birth prior to 39 weeks’ gestation, approximately half experienced a spontaneous labour following planned induction between 39 and 40 weeks’ gestation, and all 92 women gave birth to a healthy baby with no major neonatal complications. Women’s decision about timing and mode of birth are often influenced by the timing of their initial perinatal death. For example, mothers who have experienced an intrapartum-related death may opt for a planned caesarean birth to avoid labour.
(c) Postnatal care
There has been comparatively little focus on women’s postnatal mental health following a healthy birth subsequent to a perinatal death. Gravensteen et al. (2018) found that anxiety and depression in a cohort of Norwegian mothers were increased during pregnancy, decreased six to eighteen months after the birth of a live-born baby and increased again 36 months postpartum. Two other studies have noted that a previous perinatal death is a risk factor for postnatal depression (Nelson et al., 2016; Blackmore et al., 2011). For some mothers, the birth of a health baby can re-awaken the sense of loss that their other baby died. Therefore, it is important for the team providing antenatal care to ensure appropriate referrals to the health visiting service are in place prior to birth and parents are given the option to delay discharge from the community midwifery service in the postnatal period. Care providers should be aware of this increased incidence of psychological disorders and involve relevant perinatal mental health care services, particularly when there are other risk factors for postnatal depression.
A previous stillbirth or perinatal death profoundly alters the experience of pregnancy, birth and the postnatal period for mothers and their families. Data suggest that routine antenatal care does not meet parents’ additional medical and psychological needs. Parents value continuity of care and specialist care. They value staff accessibility and availability, and flexibility and regularity of appointments (Meredith et al., 2017). Care providers should consider how best to provide care which addresses these needs.
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