# Motivation and emotion/Book/2017/Stillbirth and emotion

* Multimedia presentation (3 min)

## Overview

* Mary is a healthy 25 year old and is due to have her first child in three days. She began to experience contractions and immediately contacted her midwife who then advised her to go to the hospital. Mary and her husband, John, arrived at the hospital and her baby's heart rate was monitored, however it was soon discovered that the baby had died in-utero due to a nuchal cord (i.e., the umbilical cord wraps around the fetus' neck). Mary started to feel a huge sense of guilt and failure and began to blame herself for the cause of her unborn child's death. John also felt a sense of guilt as he did not know how to support or protect Mary from the emotional pain she was experiencing, which made him feel disengaged from the relationship. Mary and John felt completely isolated from their social groups as they experienced a lack of understanding and social support, resulting in depression and anxiety that lasted for many years after the tragedy.
Mary's experience is described as a Stillbirth, which is typically defined as the death of a fetus that occurs after 20 weeks gestation, resulting in the birth of a baby without any sign of life (Golan & Leichtentritt, 2016). Stillbirth is often described as a misunderstood and disenfranchised loss - in other words, parents are unable to share their grief as it is considered unacceptable by others (Campbell-Jackson, Bezance & Horsch, 2014).
Da Silva and associates (2016) stated that there are two periods where stillbirth can occur. A global estimate of 2.2 million stillbirths occur every year before the onset of labour, which is known as an antepartum stillbirth (Da Silva et al., 2016). However, at least half of stillbirths are related to the time during labour, which is defined as an intrapartum stillbirth (Da silva et al., 2016). According to WHO (2017), intrapartum stillbirths are related to approximately 10% of cases in developed countries however, a massive increase of approximately 59% of cases are related to intrapartum stillbirths in countries such as South Asia.
Stillbirths occur at a rate of nearly 1 in 110 pregnancies (Cacciatore, Schnebly, & Froen, 2009). In Australia, approximately six babies are stillborn every day (Swan, 2017). The causes of stillbirth are identified in about 40% of cases which means a large percentage of stillbirths remain unknown (Cacciatore, 2007). Unexplained deaths often results in feelings of shame, guilt, and self-blame for the death of their baby[factual?]. The loss of a baby due to a stillbirth includes the loss of future plans, a decrease in self-esteem and the loss of identity as a parent, resulting in many psychological difficulties that can extend for many years or even decades (Campbell-Jackson et al., 2014).
According to Korde-Nayak Vaishali and Gaikwad Pradeep (2008), the possible causes that lead to a baby being stillborn include;
* Medical disorders (e.g., pregnancy induced hypertension, eclampsia, severe anemia)
* Antepartum haemorrhage (e.g., placenta previa, abruptio placenta)
* Prematurity
* Postmaturity
* Umbilical cord accidents (e.g., cord prolapse, nuchal cord)
* Congenital malformations
* Rupture uterus (e.g., obstructed labor, scar rupture)
* Birth asphyxia
* Infections (e.g., malaria, syphilis, HIV/AIDS)
* Unexplained
For many parents, like Mary and her husband, stillbirths leads to intense and prolonged feelings of grief that usually produces adverse effects on an individual's mental health and their interpersonal relationships (Golan & Leichtentritt, 2016).

## Emotional consequences of stillbirth for parents

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### Psychological effects

Responses to stillbirth are immediate, which usually range from emotional numbness to intense feelings of guilt (Campbell-Jackson & Horsch, 2014). Many researchers have found that there are long-term effects of stillbirth such as, high levels of depression and anxiety, sleeping disorders, and heightened negative emotions during subsequent pregnancies (O'Leary, 2003). These psychological effects may continue for a few months post-loss, however other research states that it may last for decades after the tragedy (Hughes & Riches, 2003).

#### Immediate effects

There is strong evidence to suggest that stillbirth is associated with immediate effects such as self-blaming and guilt (Cacciatore, 2013). Parents also report that they feel a sense of helplessness because they struggle to cope as research highlights that mothers often have thoughts about self-harm, particularly soon after the stillbirth (Campbell-Jackson & Horsch, 2014). The term "stillbirth" is in contrast with miscarriage, however evidence suggests that parents who experience a stillbirth are associated with more intense feelings of grief and isolation, considering the maternal bond has grown stronger by this time (Campbell-Jackson & Horsch, 2014). One study found that before the diagnosis of a stillbirth the majority of women reported an "instinct" that something was wrong, however following the diagnosis they described feelings of shock and emotional numbness (Trulsson & Radestad, 2014).

#### Long-term effects

Vance and colleagues (1991) conducted a longitudinal study on the long-term effects of stillbirth. The researchers identified an increase of depression and anxiety levels in parents at 2 months, 8 months, and 15 months after the loss of their baby. According to Campbell-Jackson and Horsch (2014), anxiety and depression levels remained significantly higher over long-term periods because of many factors such as:
* A delay before being able to deliver the baby
* Not having any tokens or momentous to remember the baby
* Not being able to see the baby as long as the parents felt they needed
Healthcare providers play a significant role in long-term effects (Rdestad, 2001). The professionals (i.e. nurses, doctors, hospital staff) often deal with their own feelings of grief, loss, and helplessness when having to reveal the diagnosis to the parents (Stadtlander, 2012). However, communication barriers between professionals and parents tend to arise when professionals' initial response is to withdraw from their own emotional pain and the parents' emotional pain (Stadtlander, 2012). There is some evidence suggesting that nurses were perceived as the most emotionally supportive towards parents experiencing a stillbirth, as studies show parents' stating positive experiences when speaking to nurses about their problems (Gold, 2007). Conversely, another study suggested that at least one third of their participants stated that the nurses were cold or neutral towards them; this left families to grieve on their own, resulting in prolonged experiences of psychological disturbances (Cuisiner, Kuijpers, Hoogduin, De Graauw, & Janssen, 1993). Parents who were allowed to see or spend time with their stillborn baby following the days of delivery often report lower long-term levels of depression and anxiety (Campbell-Jackson & Horsch, 2014). The importance of time in hospital with the baby is strongly emphasised by mothers' who have experienced a stillbirth as it has been reported that at least 60% of women felt that the time with their baby was not long enough (Cuisiner et al., 1993). For example, one mother recounts that she did not receive any care or support from hospital staff as she was not allowed to spend time with her baby, leaving her with regret.
   "Yes, my biggest regret is that I didn't spend that precious time with him. Even though he had passed away and it was a scary situation, he was still my baby and that was the only chance I got to see his little body and I missed it." - (Swan, 2017)
Other research also suggests that photographs of the baby helped in the grieving process, especially for parents' who were not able to see their baby (Stadtlander, 2012). Furthermore, studies have shown parents experience post-traumatic stress disorder, eating disturbances and sleep disturbances for prolonged periods of time, especially if the parents were not able to spend time with their stillborn child or have momentous to remember the baby (Stadtlander, 2012).

### Replacement child syndrome

The safe delivery of a subsequent child often aids in the grieving process after experiencing a stillbirth however, other parents report that the subsequent child leaves them feeling more anxious (Campbell-Jackson & Horsch, 2014). Côté-Arsenault (2007) stated that the experience of being pregnant again is never the same as it was the first time when a mother has already lost an unborn child. Research has supported this as mothers who have previously experienced a stillbirth report higher levels of depression and anxiety during their subsequent pregnancy, which results in lower levels of prenatal attachment (Campbell-Jackson et al., 2014). A disorganised attachment style is also reported in children who are born after a previous stillbirth due the mother's maternal unresolved grief (Hughes, Turton, Hopper, McGauley, & Fonagy, 2001). The causes of these difficulties are related to "replacement child syndrome", which is referred to as a child who is used to replace or substitute a sibling who has died (Hughes et al., 2001). Campbell-Jackson and colleagues (2014) explained that having a subsequent child often creates higher levels of anxiety and uncertainty because the threat of death or illness continues with their second child. Authors also stated that parents' did not prepare for the birth of their subsequent child such as choosing a name or setting up the nursery due to an underlying anticipatory fear of loss rather than expectation of life (i.e. they expected to lose their second child to stillbirth as well). Further evidence suggests that subsequent pregnancies shortens the mourning process, which can later lead to an increase in depressive symptoms and other mental disturbances (Bourne & Lewis, 1984).

### Relationship breakdowns

Relationship of varying kinds can be significantly affected following a stillbirth due to parents' experiencing feelings of isolation (Campbell-Jackson & Horsch, 2014). Isolation usually occurs when parents' receive a lack of social support from peers, which can be because society tends to delegitimise parents' grief when experiencing either a miscarriage or stillbirth (Hughes & Riches, 2003).

#### Social groups

The majority of parents suggest that their experience of loss is often associated with disenfranchisement, attributing blame to society more broadly for delegitimising their feelings and denying their social right to mourn (Golan & Leichtentritt, 2016). This suggests that parents often feel isolated from their social groups due to the lack of support and understanding from peers (Golan & Leichtentritt, 2016). Furthermore, other studies indicate that mothers feel a sense of exclusion from their social groups, which can prolong their feelings of isolation and shame while experiencing a great deal of grief (Campbell-Jackson et al., 2014).

#### Marital relationships

The death of an unborn child creates a sense of loss within families; this includes the loss of a child, future plans, and even self-esteem, which largely effects marital relationships (Cacciatore, DeFrain, Jones, & Jones, 2008). Research suggests that women who go through a stillbirth have a higher likelihood of experiencing a relationship breakdown with their partner (Campbell-Jackson & Horsch, 2014). However, other evidence shows that marital relationships may also significantly improve following a stillbirth because couples experience a sense of closeness after the event (Campbell-Jackson & Horsch, 2014). Furthermore, Cacciatore and colleagues (2009) stated that while an increase of marital relationship stress tends to occur after experiencing perinatal death, divorce rates do not increase. They found that there is approximately 2.1% difference in divorce rates between couples who experience stillbirths compared to couples who do not. However, other studies have found that women who are single, divorced or widowed during the time of bereavement tend to report higher rates of depression after experiencing perinatal death (Campbell-Jackson & Horsch, 2014).
* Follow this link to watch a film about a mother who experienced a stillbirth
* https://www.youtube.com/watch?v=MQolbL6Qcq0&t=11s

## Cultural and social expectations

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### Cultural differences

Approximately 2.64 million babies die every year due to stillbirth worldwide (Campbell-Jackson & Horsch, 2014). However, the global prevalence rate of stillbirth remains unclear due to the inconsistent definition used globally (Lawn et al., 2011). According to Lawn and colleagues (2011), the terminology has changed over time and there is some variation, especially between high-income countries and low-income countries. In the table below, some examples of countries that define stillbirth differently, which affects the global prevalence rate of stillbirths.
| Country | Definition of Stillbirth |
| Australia | A baby who is born with no sign of life after 20 weeks gestation (Golan & Leichtentritt, 2016) |
| Austria | A baby who is born with no sign of life and weighs 500g or more (Zeitlin et al., 2016) |
| United Kingdom | A baby who is born with no sign of life after 24 weeks gestation (Hughes & Riches, 2003) |
| Scotland | A baby who is born with no sign of life after 28 weeks gestation (Davis, 2009) |
| Germany | A baby who is born with no sign of life and weighs 500g or more (Zeitlin et al., 2016) |
| United States | A baby who is born with no sign of life after 20 weeks gestation (Hughes & Riches, 2003) |
According to Lawn and associates (2011), stillbirths are often compared to neonatal death. However, stillbirths remain a neglected issue because the Millennium Developmental Goals (MDG) do not count the death of a baby before birth in the MDG tracking. Authors also stated that some surveys do record the prevalence rate of stillbirths however, early neonatal deaths and stillbirths are usually measured as the same further indicating that stillbirths are a neglected issue. This also results in measurement errors that can reduce visibility and create problems for applying solutions. Stillbirths are not only a problem in developing countries however, as some developed countries have only managed to decrease 1% of stillbirth cases per year for the last 15 years (Lawn et al., 2011). Research has also shown that the prevalence of stillbirths is at least ten times higher than sudden infant death syndrome (SIDS) yet it receives less attention in relation to funding for programmes and research (Cacciatore et al., 2009). Minority groups are often over-represented in fetal mortality rates as it is difficult to calculate due to poor documentation in developing countries (Cacciatore et al., 2009).

### Social expectations

Cacciatore and colleagues (2009) suggested that when a mother has a stillborn baby, her social circle tends to falter during her time of bereavement. Authors also stated that stillbirth is described as a disenfranchised loss as people usually compare the grief after the death of a stillborn baby to the grief after the death of a living baby. This results in complete withdrawal from any social interaction, leaving parents feeling more isolated (Cacciatore et al., 2009).

#### The role of the father

Emotional consequences experienced by fathers following perinatal death has been largely disregarded in academic research (McCreight, 2004). Fathers tend to feel the same effects as mothers after the death of an unborn child however, their grief is often neglected by society (McCreight, 2004). One particular study found that there is a gender difference in the way men and women coped with grief. Results showed that men were less likely to display immediate effects of grief but were more likely to experience subsequent feelings of despair (Puddifoot & Johnson, 1999). The study also suggested that men were less likely to receive social support due to a lack of understanding from their social groups; this is largely because society suggests that men do not discuss their emotions because it is not classified as a male domain (Puddifoot & Johnson, 1999). Other evidence has also shown that men blamed themselves for the loss of their child as they recall not responding quicker when their partner started to feel ill (McCreight, 2004). Many other studies found that the social role of the father after perinatal loss is to provide emotional support to their partner, suggesting that men often put their own grief aside in order to comfort the mother (Badenhorst, Riches, Turton, & Hughes, 2006).

## Evolutionary theory of emotion

The evolutionary theory of emotion suggests that a mothers' offspring is extremely reliant on the parents for protection (Archer, 2003). Archer (2003) also suggests that parents evolutionary agenda is to provide sufficient resources for each child to survive, which is different to a siblings evolutionary agenda. The author also claims that when resources for survival become scarce, a sibling would not share it with their other siblings however, a parent would ensure the child's safety before their own. This theory suggests that grief and self-blaming intensifies when a parent loses a child to stillbirth because their evolutionary agenda is to ensure that their child is protected, resulting in psychological disturbances due to the failure to keep their child alive (Hughes & Riches, 2003).

## Bowlby's attachment theory

Bowlby's attachment theory suggests that parents can form a strong attachment to their unborn child, especially with the assistance of contemporary technology (Brownlee & Oikonen, 2004). Mothers and fathers who are able to hear the heartbeat of their unborn child at the 12-week mark of gestation, as well as see the child through an ultrasound, allows them to form stronger bonds with the child in very early stages of pregnancy (Brownlee & Oikonen, 2004). Technology not only allows parents' to form a bond with the child but they also form a mental image that creates a sense of reality of a new life growing inside the mother (McCreight, 2004). This theory strongly supports the idea of early attachment considering many parents who lose a child to stillbirth experience great emotional consequences (Brownlee & Oikonen, 2004).

## The Kübler-Ross model: 5 stages of grief

The Kübler-Ross model outlines five stages of grief, which is an individual's emotional response to loss (Kübler-Ross & Kessler, 2014).
The 5 stages are listed below:
* Denial
* Anger
* Bargaining
* Depression
* Acceptance
This theory of grief measures individuals' reactions to loss and the duration of their grief (McCreight, 2004). Research exploring the effects of a stillbirth on bereaved parents has found that the five stages of grief outlined by the Kübler-Ross model is extremely similar across many cases (Kersting & Wagner, 2012). One particular study found that within the first six months after a stillbirth, parents often report feelings of denial, anger, and depression (Kersting & Wagner, 2012). Acceptance usually comes within a shorter period of time if the parents' have a funeral or keep other mementos to remind them of their child as research has consistently shown that saying goodbye has had a positive impact on bereaved parents (Kersting & Wagner, 2012). Furthermore, a longitudinal study also supported that parents' felt distressing characteristics of grief (i.e. denial, anger, depression) within the first six months after experiencing perinatal loss (Brier, 2008)
* In Mary and John's case, the Kübler-Ross model was used to describe their stages of grief following their experience of perinatal loss:
* Denial: When the doctor could not find the baby's heartbeat or any movements via ultrasound, Mary and John experienced disbelief as their bodies went into shock and emotional numbness. They asked the doctor to check again as they may have made a mistake in the diagnosis.
* Anger: Soon afterwards, Mary and John felt angry and often blamed themselves for not being extra cautious during the pregnancy. Mary also blamed her body for not being able to protect and keep her unborn child alive.
* Bargaining: Mary and John often told the nurses that they would do anything to have the baby back.
* Depression: A few months later, Mary and John found that they had trouble sleeping and became withdrawn from their social circles, making them feel depressed and isolated.
* Acceptance: A few years later, Mary and John started to enter the phase of recovery as they discussed future plans of having another child.

## Complex appraisal and subsequent pregnancy

Lazarus stated that there are three key areas that are relevant during responses to stressful situations; a person's evaluation of the situation or event, their assessment for coping, and the emotions that are produced (Côté-Arsenault, 2007). This theoretical model is beneficial in understanding mothers' emotional responses to subsequent pregnancies following a pregnancy loss (Côté-Arsenault, 2007). Côté-Arsenaul (2007) suggests that women who experienced perinatal loss now indicate that pregnancy is stressful, therefore making a primary appraisal. The author suggested that after a primary appraisal, a secondary appraisal is likely to occur; the secondary appraisal outlines the individual's assessment for coping, which is either problem-focused or emotion-focused. Problem-focused coping is used to target causes of stress in practical ways, which consequently reduces stress. Whereas, emotion-focused coping is generally used when the individual has little control over the situation and avoids emotional distress through other distractions (Huizink, de Medina, Mulder, Visser, & Buitelaar, 2002). Furthermore, the study by Côté-Arsenaul (2007) found that women who previously experienced a stillbirth often adopted emotion-focused coping as they felt a lack of control in their subsequent pregnancy.

## Conclusion

Stillbirth involves a unique form of bereavement, which is unlike any other loss due to the parents' never being able to know their lost child. This loss is often neglected by society because individuals' tend to compare the death of an unborn child to the death of a live-born child, which leaves parents' feeling more isolated. Research has shown that a lack of social support from peers, family, and healthcare providers tend to result in long-term effects such as anxiety and depression. Other research relating to immediate effects show that guilt, emotional numbness, and self-blame are usually reported by mothers' who go through stillbirth as they often blame themselves for the death of their child. However, research around stillbirth and the effects on fathers' are limited, suggesting that fathers' emotions are disregarded by society as discussing problems is not a male domain. Fathers however, also report feelings of guilt, emotional numbness, and self-blame although they usually hide their feelings in order to provide emotional support for their partner. Further research on the effects of a subsequent pregnancy suggests that parents' often report higher levels of anxiety as they are aware that loss is a possibility, which is outlined in Lazarus' complex appraisal theory. Replacement child syndrome usually results in disorganised attachment styles in children born after a stillbirth as a result from the mother's unresolved maternal grief. The role of social work in hospitals is one implication for improving care; this suggests that hospital staff should adopt a standard of care that aids in supporting bereaving parents (Cacciatore & Bushfield, 2007). Such standards may include referral for psychosocial and spiritual support, open communication with the parents, giving opportunities to hold and photograph the stillborn child, and giving parents time to grieve over their lost child (Cacciatore & Bushfielf, 2007). Lastly, there are cultural differences surrounding stillbirth, which makes it extremely difficult to calculate the current global rate of stillbirths. This is due to the inconsistency of terminology used for stillbirth worldwide, which largely effects statistics and information regarding stillbirth.

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