Antenatal Results and Choices (ARC) started life as a UK charity under a different name. Support After Termination for Fetal Abnormality was registered as a charity in 1988 (ARC, 2021). A group of bereaved parents and enlightened healthcare professionals founded the organisation as they recognised that the practical and emotional needs of parents facing termination for fetal anomaly were not being met.
Support After Termination for Fetal Abnormality became ARC (2021) 10 years later, to reflect how the nature of the charity's work had changed. The helpline was still taking calls from those who had experienced termination for fetal anomaly, but also from many parents struggling after being told their baby was not developing as expected, wondering whether to have amniocentesis or working out what findings from ultrasound scans meant for them.
Today, ARC provides impartial information and support to parents at all stages of antenatal screening and diagnosis, and continue to offer specialised bereavement support around termination for fetal anomaly. Such support remains necessary because although there is now more openness about pregnancy and baby loss and every year Baby Loss Awareness Week in October sees more and more bereaved people sharing their stories, few will talk openly about termination for fetal anomaly. In fact, this termination is as common as stillbirth, with at least 5000 women and their families affected every year (National Congenital Anomaly and Rare Diseases Registry Service, 2021).
Antenatal Results and Choices supports parents during antenatal screening and diagnosis, and offer bereavement support for those who experience termination for fetal anomaly
What sets termination for fetal anomaly apart from other pregnancy loss is that it involves parents making an active decision that results in their baby's demise. Findings from a genetic test or scan mean they find themselves faced with a circumstance few ever imagine: the heartbreaking choice to end what is most often a much-wanted pregnancy. The harrowing nature of this situation can lead to more complicated grief (Kersting and Wagner, 2012).
Many women discover that what they thought they might do in the abstract changes in the complex reality of what a prenatal diagnosis means for their prospective child and their own future (Hawkins et al, 2013). Psychologically, many women struggle to reconcile their concept of themselves as a mother carrying a desired baby with the decision to terminate.
‘I really thought after bonding with my baby and thinking the week before we found out the results that I would never dream of ending the pregnancy whatever the outcome. I researched the condition, and we just wouldn't know how poorly she would be until she grew up (if she lived that long)’.
Such conflicted feelings can lead to what has been termed ‘disenfranchised grief’, where women do not feel they deserve sympathy from others or have the right to mourn their loss because it was self-inflicted (Korenromp et al, 2005).
How the pregnancy is ended
There is evidence that it is helpful for women to have a choice of method in the circumstances of termination for fetal abnormality, meaning the opportunity to decide whether a surgical procedure under general anaesthetic or a medical induction of labour and birth best suits their individual coping style (Kerns et al, 2012). It should be noted that both methods have a similar risk profile (Bryant et al, 2011). ARC's experience confirms this evidence. Once women have clear information about what the different procedures involve, they are able to work out what they can best cope with. While NHS settings can always offer medical management, provision of in house second trimester termination services is very limited. However, later surgical termination services are available via independent sector providers and parents should be made aware of this option.
ARC (2019) provides a booklet about ending a pregnancy, which can help parents consider their options.
Support after termination for fetal abnormality
Whether parents have decided to end their pregnancy surgically or medically, they should be entitled to the offer of bereavement support. In England and Scotland, there is a useful set of guidelines covering termination after fetal abnormality, as part of the National Bereavement Care Pathway (2020).
ARC's bereavement services include password-protected, gently moderated online forums for bereaved men and women. They provide a safe and welcoming space for members to offload emotions and share experiences with others who have real understanding because they have shared similar circumstances. It is a way of breaking the isolation associated with this kind of loss and building a community of support and empathy wherever in the country people might be. ARC has a UK-wide network or trained peer support volunteers who can offer bereavement support by phone or email.
Because of the complicated grieving process in the aftermath of termination after fetal abnormality, it is not unusual for parents to seek out interventional counselling or therapy. This is not easy to access on the NHS and while the charity Petals can offer free sessions for those who have been through pregnancy loss, they are oversubscribed (Petals, 2020). Therefore, parents may find themselves on long waiting lists or trying to navigate the private sector. Some end up being seen at former ‘pregnancy crisis centres’, which run post-abortion recovery programmes based on the premise that abortion is morally wrong. ARC cannot offer therapeutic counselling, but the professional helpline team is skilled in empathetic listening and are able to stay with and help contain people in acute distress. ARC can also help parents access counselling services that are equipped to deal with the psychosocial sequelae of termination after fetal abnormality.
A note on terminology
The convention in a medical context when talking about the ending of a pregnancy after a prenatal diagnosis is to use the word ‘termination’. Parents themselves are often keen to differentiate themselves from the circumstances of an unwanted pregnancy or from the heated polemics and stigma encapsulated in the word ‘abortion’. Some find the word ‘termination’ too harsh and will favour terms such as ‘pregnancy interruption’, ‘managed miscarriage’ or ‘compassionate induction’. ARC takes the lead from parents in the language they prefer, but as an organisation, will continue to talk about ending a pregnancy or termination. It is important that more opaque language does not serve to obscure the reality or increase stigma. It is ARC's experience that in order to integrate and learn to live with their loss, parents need to accept that they made a choice and acknowledge that this was the best decision they could make in the circumstances.
Last word
Since 1988, ARC has worked with thousands of parents who have undergone termination after fetal abnormality and the charity's employees can attest to the complexity of the experience, but also to the resilience parents show in coping with this painful life event, moving forward with their lives and restoring hope. And most will echo the sentiments from a mother's account of her experience: ‘This was the most dreadful thing we have ever been through in our lives. The grief, the emotional pain and the shock were overpowering. But even through this truly terrible time we felt a sense of gratitude that we had the choice to end the pregnancy. We felt and still feel that we made the right decision for us, but also, importantly, for her’ (ARC, 2011).