“She was perfect, a beautiful baby girl… only sleeping”: Stillbirth and PTSD in the era of DSM-5

by Elizabeth Ford, Research Fellow, Brighton & Sussex Medical School. http://www.bsms.ac.uk/research/our-researchers/elizabeth-ford/

Parents anticipate the arrival of their baby for months, often talking to and interacting with him or her in the womb. The death of a baby during pregnancy, or at birth, is usually very unexpected and is a major bereavement for the whole family. Stillbirth, defined as the loss of a baby after 24 weeks gestation, is unfortunately a common event in the UK, with 11 stillbirths occurring every day. Stillbirth has profound mental health consequences for those affected and is thought to be a trigger for post-traumatic stress disorder (PTSD). One study found current and lifetime diagnosis rates of PTSD in mothers following stillbirth in the UK to be 20% and 29% respectively (Turton et al, 2001), and there is a high risk of women who have PTSD also experiencing anxiety and depression.

The way women are treated by both professionals and family and friends following a stillbirth can have a considerable impact on their psychological adjustment. Following a stillbirth, it is still the practice in many parts of the world for the baby’s body to be disposed of with no proper funeral, for the mother to be told she “can always have another baby” and for the baby’s importance to be diminished by others (Froen et al., 2011). All of these factors can contribute to a mother’s sense of isolation and lack of support, compounding her grief.

Factors which associate maternal mental health status and stillbirth have been studied and include the time since the baby died, the gestational age of the baby, professional and social support, and subsequent pregnancy (Crawley et al., 2013). There is a mixed picture of the value of the practice of encouraging parents to view and hold their stillborn infant. Some studies have found it worsens psychological outcomes (Hughes et al, 2002), some that it improves them (Radestad et al., 1996), and others that it makes no difference. Parents report appreciating and valuing the experience of holding their baby and making mementos such as photographs, footprints or keeping a lock of hair (Crawley et al., 2013).

For those women who do experience PTSD following stillbirth, there is a higher risk of relationship breakdown, and persistent symptoms of PTSD even seven years later (Turton et al., 2009). Relationship breakdown was also associated with holding the baby after the stillbirth, and with low perceived support from the partner. Relationship breakdown and divorce are serious and pervasive consequences of PTSD (Kessler et al 1998), which in turn can cause poverty, low income, poor health and low life satisfaction. These findings underline the importance of offering parents appropriate psychological help in coping with their loss and in supporting each other through its aftermath.

The publication of the new Diagnostic and Statistical Manual for Psychological Disorders (DSM-5) in 2013 is an opportunity to reflect on the experience of stillbirth and how we consider normal grief reactions following a devastating loss. Some argue that “medicalising normal grief stigmatizes and reduces the normalcy and dignity of the pain, short-circuits the expected existential processing of the loss, reduces reliance on the many well-established cultural rituals for consoling grief, and would subject many people to unnecessary and potentially harmful medication treatment” (Frances, 2010). Grief is inescapable following loss of loved ones, and is a long process rather than a short one, it can work itself through in different ways in different people.

However, DSM-5 allows for the diagnosis of a psychiatric disorder following the loss of a loved one. In DSM-5, depressive symptoms which occur following a bereavement are considered to respond to the same psychosocial and medication treatments as non–bereavement-related depression, and it has been found that evidence does not support the separation of loss of a loved one from other stressors in terms of its likelihood of precipitating a major depressive episode or the relative likelihood that the symptoms will remit spontaneously (DSM5.org). DSM-5 criteria for PTSD have changed significantly. The new criteria define a single traumatic event more rigidly, as being exposed to death, threatened death, actual or threatened serious injury, or actual or threatened sexual violence, with the following clarifications:

  • A life-threatening illness or debilitating medical condition is not necessarily considered a traumatic event. Medical incidents that qualify as traumatic events involve sudden catastrophic events (e.g. waking during surgery, anaphylactic shock)
  • Witnessed events include … a medical catastrophe in one’s child (e.g. a life threatening haemorrhage)
  • Indirect exposure through learning about an event is limited to experiences affecting close relatives or friends and experiences that are violent or accidental (e.g. death due to natural causes does not qualify)

The sudden and unexpected death of a much-anticipated baby falls within these criteria as both a sudden catastrophic medical event and the witnessing of a catastrophe in one’s child. Therefore post-traumatic stress symptoms following a stillbirth can still lead to diagnosis of PTSD.

DSM-5 also includes the new “Persistent Complex Bereavement Disorder” which is characterised by persistent yearning for and preoccupation with the deceased and the circumstances of their death; intense sorrow and emotional pain; marked difficulty accepting the death; feeling shocked, stunned or emotionally numb; difficulty with positive reminiscing; bitterness or anger following the loss; and maladaptive appraisals; persisting for more than 12 months after the loss. There may also be excessive avoidance of reminders, among other social and identity disturbances (Friedman, 2013). The onus therefore is on clinicians to distinguish between the flashbacks and intrusions of PTSD, and the yearning and preoccupation of complex bereavement, when making a diagnosis of either disorder following the loss of a loved one.

 

This article was primarily written for researchers in the field of perinatal mental health but if you are affected by the issues discussed, you can access support and advice through the Stillbirth & Neonatal Death charity: http://uk-sands.org/

All change… what does DSM-5 mean for perinatal PTSD?

By Susan Ayers, Centre for Maternal and Child Health, City University London

In May this year the American Psychiatric Association released version 5 of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to some controversy and criticism, including from Allen Frances, the chair of the previous DSM task force (Psychology Today, 2012). The British Psychological Society also expressed concerns about aspects of DSM-5, and the Division of Clinical Psychology published a detailed statement in response to DSM-5. So what are the implications of DSM-5 for perinatal PTSD?

Key changes in DSM-5 criteria for PTSD are outlined in an APA factsheet. Frustratingly, getting access to the complete diagnostic criteria seems to be difficult unless you purchase the manual. Nonetheless, the key changes outlined by the APA factsheet and gleaned from a few other sources are as follows:

  • PTSD is now classified as a ‘trauma and stressor-related disorder’ rather than an anxiety disorder.
  • Event criteria have changed so the person has to directly experience or witness “actual or threatened death, serious injury or sexual violation”. Previous criterion A2 about individuals responding to this event with intense fear, helplessness or horror has been removed. In addition, certain events are excluded from qualifying as a traumatic event, including the unexpected death of a family member by natural causes. 
  • There are now four symptom clusters of PTSD instead of three: (1) intrusions, (2) avoidance, (3) arousal and (4) negative cognitions and mood. The new category of ‘negative cognitions and mood’ includes some symptoms of numbing that were previously included with avoidance symptoms, in addition to new symptoms such as persistent blame of self or others.
  • Arousal symptoms now include more aggressive or self-destructive behaviours.
  • Two subtypes have been added of PTSD in children and PTSD with dissociative symptoms.

For perinatal PTSD the changes to event criteria are critical. Traumatic births still fit criteria because women can directly experience the threat of death or injury. Similarly, fathers and birth partners may fit criteria by witnessing such events. However, the exclusion of death of a family member by natural causes could (arguably) exclude death of the infant before, during or after birth, depending on how ‘natural causes’ is defined. This raises the question of whether psychological problems arising from perinatal infant death are more appropriately conceptualised as PTSD or complicated grief.

This tightening of event criteria to potentially exclude infant deaths, coupled with the necessity for parents to have four types of symptoms rather than three, means prevalence rates of postpartum PTSD could reduce. On the other hand, the removal of criterion A2 where the person has to respond to the event with intense fear, helplessness or horror could increase prevalence rates of postpartum PTSD. The rationale behind this change is that people respond to traumatic events in different ways (e.g. anger, shame, guilt) and that inclusion of A2 “proved to have no utility in predicting the onset of PTSD” (see APA factsheet).

Postpartum PTSD research certainly supports the notion that women respond to traumatic birth with a wide range of negative emotions (e.g. Ayers, 2007).  However two large studies carried out in the UK and Australia suggest the removal of A2 is likely to inflate prevalence rates of postpartum PTSD because many women perceive a threat of injury or death during birth. In the UK, Ayers et al (2009) looked at prevalence of postpartum PTSD in 502 women in community studies and found 35% of women reported perceived threat of injury or death. Similarly, 35% of women reported feeling intense fear or horror at some point during birth. However, only 19.7% of women reported both perceived threat of death or injury and feeling intense fear, helplessness or horror. This was also the case in an Australian study where Boorman et al (2013) looked at criteria for a traumatic birth in 890 women and found that prevalence of traumatic birth doubled from 14.3% to 29.4% when women’s emotional responses (criterion A2) were removed.

It is therefore not clear whether changes to PTSD diagnostic criteria in DSM-5 will reduce or increase prevalence rates of postpartum PTSD. In other populations the indications are that DSM-5 criteria result in lower prevalence rates (Miller et al, 2012). Research is needed to examine whether this is also the case in perinatal samples. However, before we do this we need to consider how best to measure perinatal PTSD, given the changes introduced by DSM-5. Finally, these diagnostic changes also have implications for screening and access to treatment that we haven’t considered here.

If you have any comments on this article or related issues, such as the measurement of perinatal PTSD, please let us know or leave a reply below. We are keen to publish blog posts or articles from any of our members – just get in touch with Ellinor (ellinor.olander@city.ac.uk) or Susan (susan.ayers.1@city.ac.uk).