“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/

“I wasn’t meant to give birth that early”: Posttraumatic stress and preterm birth

By Dr Alexandra Sawyer, University of Sussex

The preterm birth rate for live births ranges from about 5% to 10% in Europe (Euro-Peristat Project, 2013). Preterm birth is the most important determinant of adverse outcome in terms of survival, quality of life, psychosocial and emotional impact on the family and costs for health services.

Most studies looking at psychological outcomes following preterm birth have focused on depression and anxiety. However, only recently has the birth of a preterm baby been explored as a traumatic experience. The birth of a preterm baby can occur suddenly and the parents are often not prepared physically or emotionally (Lindberg & Ohrling, 2008). Parents can be overwhelmed with the concern of whether or not their child will survive and of future health problems (Lohr, Von Gontard, & Roth, 2000). Preterm babies are often taken away from their mother immediately so they can be stabilised and transferred to the neonatal unit. It is not surprising therefore that the emotional distress of the birth combined with early separation from the baby may contribute to a posttraumatic stress response.  Below are two quotes from women we have interviewed about their experiences of giving birth to a very preterm baby (Sawyer, Rabe, Abbott, Gyte, Duley, & Ayers, 2013):

“It’s daunting going in a room when you’ve never been in.  All your bits are going to be on show.  And you’re worried about your children.  Are they gonna survive?  Are they gonna be born stillborn?” (Twins born at 30 weeks gestation)

“… I hadn’t seen anything of him, and I just saw this like incubator whisked off and off he went.  So none of this bonding ‘you’ve got a baby boy, here he is’ or ‘have a look at him’.  Didn’t give me that opportunity.  Nothing.  I hadn’t seen him from coming out to after I’d recovered in recovery.  I hadn’t.. I didn’t see any of that.  He was gone.  It was like ‘have I had baby?’ ” (Baby born at 27 weeks gestation)

 

Studies report high prevalence rates of posttraumatic stress disorder (PTSD) following preterm birth: 7% (Kersting et al., 2009), 17% (Stramrood et al., 2011), 23% (Misund, Nerdrum, Braten, Pripp, & Diseth, 2013), and 41% (Pierrehumbert, Nicole, Muller-Nix, Forcada-Guex, & Ansermet, 2003). The research also suggests that posttraumatic stress symptoms persist beyond one year after birth. For example, Ahlund, Clarke, Hill, & Thalange (2009) found that 2-3 years after preterm birth mothers still reported relatively high symptoms of posttraumatic stress compared to mothers of healthy term babies. Several review papers have also identified preterm birth as a strong predictor of the development of PTSD following childbirth (e.g. Anderson, Melvaer, Videbech, Lamont, & Joergensen, 2012; Olde, van der Hart, Leber, & van Son, 2006). Therefore, early indications are that women who give birth to a preterm baby report more posttraumatic stress symptoms which last for a considerably longer time, compared to women who give birth to a term baby.

A number of studies have reported that PTSD following childbirth can negatively impact parent-infant relationships (Nicholls & Ayers, 2007). For example, Feeley et al. (2011) found that mothers of preterm babies who displayed high levels of posttraumatic symptoms were less sensitive and less effective at structuring the interaction when playing with their baby. Another study found that mothers of preterm babies who had high levels of posttraumatic stress symptoms were more likely to display a controlling type of interaction with their baby, which was characterised by hostility (Forcada-Guex, Borghini, Pierrehumbert, Ansermet, & Muller-Nix, 2011). This type of attachment dyad has been associated with eating problems, hearing and speech difficulties and poorer social/personal development in the infant (Shaw et al., 2013).

Of course not all parents who give birth to a preterm baby will display posttraumatic stress symptoms, and many parents adjust well. However, these early research studies suggest that we do need to identify women at risk of developing posttraumatic stress symptoms in order to optimise the health of mothers and their babies. Routine screening for perinatal PTSD in mothers who have given birth to a preterm infant is recommended (Feeley et al., 2011). This would help plan supportive interventions in the neonatal period, particularly for those most at risk. However, as with the general perinatal PTSD research, two key questions need to be considered first: 1) What is the best way to screen for perinatal PTSD, and 2) How do we treat vulnerable women once identified?  But, what is most critical is that healthcare professionals are aware that the birth of a preterm baby and subsequent hospitalisation may lead to a posttraumatic stress response in some parents.

Bliss is an excellent charity which provides care and support for premature and sick babies and their families. They offer a free help and advice line: 0500 618140 (or email:   hello@Bliss.org.uk).