Painfully precious moments

Content note: This piece talks about pregnancy and baby loss [miscarriage (including molar and ectopic pregnancy); Termination for Medical Reasons (TFMR), stillbirth and neonatal death; and the sudden, unexpected death of an infant]  If you need help now, here is a list of  support groups https://copingwithpregnancyloss.com/support

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On 1 October 2020 Chrissy Teigen and her husband John Legend shared a series of photos on social media [link: content note applies] following the death of their baby Jack. The significance of these images, coincidentally at the start of Baby Loss Awareness Month, was immediately welcomed by bereaved parents. Sadly the trolls who regularly target Teigen and Legend were quick to dismiss the photographs as a 'publicity stunt'.

Two years ago I wrote a book called Coping With Pregnancy Loss following my three miscarriages, and the inadequate healthcare I received during them and my subsequent two pregnancies that went to term. I didn't want anyone else to feel as alone and afraid as I had, so I combined evidence with people's stories of loss and signposting to sources of care, with illustrations by Sean Longcroft. I was unsuccessful in promoting the book to the media primarily because, unlike Teigen, I had no heart-breaking photos to share. I noted on Twitter that whatever we do in response to babyloss we will often be found wanting.

In the past, stigma, superstition and shame would've silenced Teigen. But change, driven by the babyloss community and aided by social media, turned her tragedy into a teachable moment. Parents used Twitter and Instagram to correct the claim that photographing loss was something strange or attention seeking, noting how volunteer photographers, bereavement midwives, or family members can capture painfully precious moments that later help with grieving and remembering babies. Or how cuddle cots allow for more time with your baby. What began as a celebrity story became an opportunity to push for better antenatal care and bereavement support, access to therapy (where needed) and implementing the National Bereavement Care Pathway.

Until quite recently psychologists and clinicians believed the best way for bereaved parents to cope was to avoid dwelling on losses; to "try again" quickly' especially after miscarriages happening before 12 weeks; and for babies to be removed swiftly so parents could not see them, with graves (if they existed) not always known and recording of losses avoided. In some countries this remains the case today. While historical documentation of babyloss has always indicated a more diverse and nuanced experience, it's only recently the experiences of fathers and lesbian parents have been noted within healthcare and therapy. That psychological care is important alongside physical care during and especially after loss. And that poorly delivered healthcare and negative family or workplace reactions can transform a distressing or sad event into a full blown trauma. As can delays in accessing services.

Babyloss in numbers

In an attempt to reassure us we're not alone, babyloss, we're told, is not uncommon. 1 in 4 pregnancies end in loss either during pregnancy or at or soon after birth. Globally there are 2.6 million stillbirths annually with those in low income countries more adversely affected. What might be statistically common is still personally, psychologically physically and financially devastating; masking also how high levels of loss may be due to clinical errors, lack of safeguarding and poor healthcare; or other risks such as domestic abuse.  

Psychological reactions to loss

Studies of pregnancy and baby loss repeatedly reveal a range of reactions including sadness and distress; grief (about the loss itself and the loss of future plans and dreams); uncertainty; numbness; jealousy; anger; fear; a loss of confidence; panic; despair; denial; failure; guilt and resentment. These feelings may vary in severity, can coexist, and may last for months, years or a lifetime; and may cause or worsen mental illness. In some cases people may also feel relieved about their loss.

Women, non-binary people, trans men and their partners may benefit from charities, support groups (on and offline) and ways of memorialising their loss. Some people will want to talk, others will react to grief through their work, sport, humour, fundraising, or simply by shutting it out. Information, assistance and joined up care can ensure people are supported in grief.  While reactions to loss can be intense, this does not mean psychological care is automatically required. But when it is needed care should be culturally sensitive, delivered in a timely fashion, and tailored to the needs of those seeking support. Currently this is not the case.  

Who is left out (and why)?

Inequalities affect babyloss as much as other areas in healthcare. Black women are twice as likely to experience babyloss, adverse events during pregnancy and birth, and five times more likely to die in childbirth. Racism remains a public health issue and has a major impact on fertility, pregnancy and baby loss. 

Lesbian and bi women, non binary people and trans men may also struggle to find a place within the healthcare, the babyloss community and media coverage. While healthcare and charities have begun to acknowledge the needs of LGBTQ+ people around babyloss, this is a recent development, following years of avoiding the topic or refusing to cooperate with researchers seeking to study lesbian mothers and loss.  

Support for those who are very young who've experienced babyloss is often absent, and those who learn about the loss may claim it's 'all for the best'. Gypsy and Travellers (who also struggle to access healthcare) have been told similar. Disabled people have noted a lack of accessible support (including sign language interpreters or advice and care that acknowledges neurodiversity). Research may focus on the links between disability and loss, but not on the needs of disabled parents during and after losses.

Siblings and other family members are not always included in research or advice giving, and parenting advice for those who are grieving a loss while caring for a child or teen (including those with special needs) is inadequate.

Termination for Medical Reasons (TFMR) is offered as an option if babies have a chromosomal, genetic or structural abnormality and/or if a continued pregnancy will harm the life of the mother, non binary person, or trans man. Some parents prefer to continue the pregnancy knowing their baby will die, while others find TFMR a comforting alternative. This remains an especially difficult topic to discuss, although barriers are often less from those who've opted for TFMR and more from wider media outlets who refuse to cover it. Judgement from healthcare professionals and therapists can compound distress.

In cases where a twin or other multiples have died with remaining siblings surviving, loss can be overlooked as the focus is on the surviving baby(ies). leaving parents to struggle with newborns while grieving the immediate loss of their siblings. Birthdays and other milestones can be especially difficult to navigate. 

Clinicians, researchers and therapists are more often straight, white or Asian, neurotypical, abled and middle class. Their experiences will influence what is funded, taught and researched; how care is delivered; and who is represented within babyloss education, outreach, counselling and care. This is echoed across media coverage, where stories also require pathos but not parents appearing unhinged by grief. Photos (if available) of babies that have died are vetted for approval with only 'attractive' ones printed (this also applies to social media which frequently deletes pictures deemed 'graphic'). Hopeful story arcs are preferred, so 'rainbow babies' (those born after a previous loss) are used to imply happy endings, erasing people who don't fit such narratives including those who continue to live with infertility.  

The role of psychology

Psychological research and practice has been important to documenting how we experience loss and addressing ways to improve medical and psychological care plus advice giving. Psychologists have collaborated with clinical researchers and charities to this end, and the use of creative and digital methods has connected research with clinical tuition and the needs of the wider babyloss community. Internationally psychologists are also working to document diverse needs and reactions to loss and support bereaved parents in communities with limited access to healthcare that hold negative views about babyloss, to share their stories and heal collectively.

Clinical psychologists, therapists and counsellors may offer individual, partner, family, and group counselling, using a variety of modalities including acceptance and commitment therapy (ACT), EMDR, compassion focused and trauma informed approaches. Therapy be used during or after loss, for those trying to conceive, dealing with fertility concerns, in pregnancy after loss, or for ante and postnatal anxiety and depression. Some people seek therapy soon after loss, others decades after.

Barriers and blocks

Frustratingly, while there is a strong evidence base on psychological reactions to loss; the importance of memorialising, connecting and communicating; and the ways in which trauma may be exacerbated; much of this does not routinely find its way onto the psychology curriculum and particularly not adequately within medicine and nursing. This is an issue that the All Party Parliamentary Group on Babyloss continues to address.  

Psychologists wanting to research this area may also find the field difficult to navigate. Anyone that has a negative experience with healthcare professionals will be understandably wary of researchers. And while charities have successfully linked with psychologists for research, sometimes competition between organisations may mean working across networks may be fraught. 

Silo working either between healthcare trusts, research teams, disciplines and awareness groups can mean key messages aren't shared, mistakes may be repeated, and a culture of blame and secrecy continue. All of this can be bad for research and therapeutic practice and catastrophic for maternity care.

Impact of the pandemic

Babyloss is hard enough but Covid-19 has introduced specific problems that have increased risks within pregnancies and births and for newborns; harmed ante and postnatal mental health; and hampered efforts to support those going through loss. Partners have been blocked from attending scans meaning their loved ones have to go through this alone. Advice for Black, LGBTQ+ people and fathers has reduced as online babyloss spaces are overwhelmingly made up of straight, white, women. For those struggling with infertility or using assisted conception, access to services have been limited or postponed, in some cases forcing people to make the heart-breaking decision to stop IVF. Austerity had already affected charity funding, but the pandemic has pushed this further. Smaller charities established by people to process their loss and remember their babies have had to close, cutting off support for individuals and creating yet another bereavement.   

Supporting each other through babyloss

Being able to talk about loss; name babies; find practical solutions to help each other (e.g. offering to do someone's shopping or care for existing children); signposting to sources of support; or finding creative ways to remember babies and raise awareness can all be meaningful. Psychology has a lot to offer in helping people support themselves during or after loss or care for loved ones who've been bereaved. Research is still required to find answers about the causes of loss, find more representative stories and accounts, and address inequalities. Getting evidence into practice so medics, nurses, GPs, clinical psychologists, therapists and volunteers can provide psychologically-informed care for diverse audiences in accessible ways is vital. So is supporting campaigns for more widespread, affordable and accessible psychological care.

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Babyloss Awareness Week 2020 #BLAW2020 runs from the 9-15 October, culminating with a global Wave of Light celebration (online) at 7pm on the 15^th.

Coping With Pregnancy Loss https://copingwithpregnancyloss.com is a self-help book for anyone affected by pregnancy loss, their families, healthcare providers and therapists. 

Petra Boynton is a Social Psychologist and Agony Aunt. @drpetra on Twitter.

Main illustration by Sean Longcroft from Coping With Pregnancy Loss.