It is 40 years since post-traumatic stress disorder (PTSD) received official recognition as a mental health condition in the third edition of the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 1980). That recognition came about only through the efforts of a group of Vietnam veterans, who had fought to have the symptoms they were experiencing – flashbacks, anxiety, a sense of constantly being on alert – recognised as a medical condition.
By the time the manual was published, psychologists had begun to realise that PTSD could be triggered by other kinds of trauma, such as rape or violent assault. Even so, it was well into the 1990s before the possibility was raised that birth, too, could lead to PTSD (Reynolds, 1997). There is now widespread recognition that postnatal PTSD is relatively common: a recent review of research suggests that approximately 1 in 25 women experience the condition after giving birth, roughly 29 000 women every year in the UK (Yildiz et al, 2017).
The Birth Trauma Association (BTA) was founded in 2004 by two women, Maureen Treadwell and Debbie Sayers, who recognised that there was little support available for women who had been traumatised by birth and set about trying to remedy it. Debbie has moved on to other ventures, but Maureen is still very much involved as the treasurer and research officer.
At the BTA, we use the term ‘birth trauma’ to describe both postnatal PTSD and trauma symptoms that may not be enough for a full-blown diagnosis. A number of events in a birth can lead to a woman developing birth trauma, but research has identified several typical factors. Women often describe feeling out of control, and sometimes fearful that they or their baby are about to die (Ayers et al, 2007). Many describe being left in extreme pain without pain relief, or having their pleas for help ignored by staff (Nicholls and Ayers, 2007). Some cite having procedures such as internal examinations carried out without their consent (Rodriguez-Almagro et al, 2019). An unpublished survey of our members in 2020 found that approximately half of them had undergone emergency caesareans and nearly a quarter had experienced forceps births. Having a baby who is born ill and has to spend time in neonatal care can also be traumatising.
Postnatal post-traumatic stress disorder is under-recognised and underdiagnosed. Many women are told to be grateful their baby is healthy and that they need to ‘move on’
However, in the end, trauma is subjective: what may seem like a straightforward birth to the midwives attending can feel traumatising to the woman. Conversely, a woman may have an objectively very difficult birth but not feel traumatised. Oten, what makes the difference is whether the woman feels the people attending her listened to her and took her seriously (Ayers and Ford, 2012).
PTSD is a debilitating condition. It is characterised by four groups of symptoms: intrusive thoughts, such as flashbacks and nightmares; hyperarousal (extreme anxiety and jumpiness); avoidance of any reminder of the trauma; and negative cognition and mood, a broad category covering feelings of guilt, low mood and memory loss (American Psychiatric Association, 2013). For new mothers, it is a form of torture; they are unable to enjoy their baby, their mind constantly replays the trauma of the birth. They may avoid contact with other new mothers and feel so anxious that they refuse to let anyone else hold their baby (Ayers et al, 2007).
As a charity, we focus on three main areas. The first is support. We set up our Facebook group in 2008, and it now has nearly 10 000 members. They post dozens of times a day and share tips about what helps. We also have a team of peer supporters who respond to distressed women over email and give support based on their own experience. Where necessary, we signpost to mental health services – trauma-focused cognitive behavioural therapy and eye movement desensitisation and reprocessing are therapies that are effective in treating trauma and recommended by the National Institute for Health and Care Excellence (NICE, 2018).
In 2021, we intend to begin offering phone support. We would also like to support fathers better: it is possible to suffer PTSD as a consequence of witnessing someone else's trauma (indeed, PTSD is common amongst midwives), and although we do our best to support fathers who come to us, we know there is more we could do.
The second area that BTA focuses on is informing policy to improve maternity care. We respond to NICE consultations, and work with the royal colleges and NHS trusts. We had a representative on the working party looking into the Obstetric Anal Sphincter Injury Care Bundle, for example. Maureen runs the Maternity Outcomes Matter project, which brings together experts and parents with the aim of finding ways to reduce avoidable harm to mothers and babies during birth. We often respond to requests from academic researchers to help them find women to take part in their research. We collaborate where we can with other birth charities such as Birthrights, Mothers with Anal Sphincter Injuries in Childbirth, and Make Birth Better.
The final area is campaigning and awareness raising. Postnatal PTSD is still an under-recognised and underdiagnosed condition (McKenzie-McHarg et al, 2015). Many women, unaware of what their symptoms represent, suffer in silence. Others are wrongly diagnosed with postnatal depression. It is common, even now, for women to be told by friends, relatives and even health professionals that they should be grateful they have a healthy baby and they need to ‘move on’ (Moore, 2019).
We work with newspapers and radio journalists on stories about birth trauma, and we use social media (Twitter, a public Facebook page and, increasingly, Instagram) to engage with people interested in the topic. Since 2017, we have run an annual Awareness Week. This year, we ran the #babystepschallenge, in which women posted pictures of their own shoes next to their child's shoes to illustrate their birth trauma journey, and this was a huge success on social media. We are also starting to offer training to health professionals about birth trauma – an activity that bridges the campaigning and policy elements of our work. It has been encouraging to see more and more trusts take an interest in what birth trauma is and how to treat it.
Although we have grown hugely, we are still a small organisation. With no regular income, we rely heavily on donations, which means we are still largely a volunteer-led organisation. (As CEO, I am paid for 1 day a week.) This means that responding to constantly growing demand for our services is a challenge, but we have a good team and we do our best. We think we punch above our weight.