If you are told during pregnancy that your baby has a life threatening, life changing or life limiting abnormality, you are faced with one of the most complex ethical debates of the 21st century. Much of my work involves walking with parents when a fetal abnormality has been identified, providing information, time and a safe place for them to process the news and to make an informed choice about what to do.
In the UK we have the legal right to end a pregnancy (termination/ abortion), a choice not available in some other countries. This is often held up as an indicator that we live in a just and humane society. Is that necessarily correct? It seems to me that we are now in a situation where, in many cases, it is expected that the identification of a fetal abnormality will inevitably lead to termination of the pregnancy. I know that most of my healthcare colleagues believe that they offer choice. Sadly, what we say and what is heard and understood in complex, high pressure situations, can be very different. I found it quite disturbing to watch this very powerful short film about choice when facing a prenatal diagnosis, at least in part because I am confident that many of the healthcare professionals involved would feel that they were “offering choice”. I am grateful to Positive About Downs Syndrome https://positiveaboutdownsyndrome.co.uk/ for raising this issue.
Over many years I have worked with a very large number of those grappling with the dilemma of what to do when fetal abnormality or difference is identified. My own point of view has changed and developed over time as I have heard and reflected on their thoughts and experiences. As a student nurse, aged 18, I made a stand and stated that I would not take part in terminations, whatever the situation. As a pregnant woman with a demanding career I was fearful that my babies might be different and believed that I could not cope with that and so said that I would opt for termination if an issue was identified. I was very lucky never to face this situation. In more recent years I have cared for very premature babies and those with very significant difference. I have spent many, many, hours with parents as they grappled to identify the most loving and “correct” decision fort their baby with life changing issues. I have held in my hands babies whose lives have ended thorough termination, and held their parents in my arms. I have watched families continue their pregnancy knowing of their baby’s life limiting issues, helped them to birth their babies and spend precious minutes, hours or days as a family. I have supported parents in their grief both following termination for abnormality and following the death of a baby at or shortly after birth.
What difference is acceptable, and what is not, are very personal decisions. The factors that affect these decisions and the way we perceive situations will inevitably vary over our lifetime. Such profound and life changing decisions cannot be made quickly. Enacting those decisions is often extremely challenging.
To assume that identification of fetal abnormality or difference means that termination is automatically required is a massive simplification of the very complicated issues involved. It ignores the moral and religious teachings that many of us have learned. It ignores that there is a choice. In an environment as pressurised as the NHS, it is very easy for assumptions to become the norm. As a shocked parent facing news of fetal abnormality it can be hard to say “Stop! I need to reflect on this. I need to talk to leaders from my faith tradition, my family, those who have walked this way before. I need time to think”.
I believe in informed choice. That requires the provision of information, often needing repeating in a variety of ways so that the parent(s) can hear it. It requires time. It requires courage from both the health professionals and the parents. I suggest that a just and humane society would ensure that there are professionals available to offer such support. From the accounts I hear every day I know that this is not currently available to a great many women. I offer a service which supports the work of the NHS. I offer the service that I always sought to provide whilst working within the NHS, but rarely had the time to do as well as I felt was appropriate. I can meet with you in your home, at a time to suit you, for as long as you need. Combining specialist midwifery knowledge and skills with counselling skills, I can provide a unique service through this time and onwards to the end of the pregnancy and beyond.
If you, or someone you know, is faced with unexpected news in pregnancy please do not hesitate to call. Responding to suspicions of fetal abnormality and informed choice is at the core of my work. Watch the video on my homepage to hear more about how I work to support choice. I respect cultural and faith issues and am glad to have close contacts within faith communities. I am committed to providing informed choice. I offer care and ongoing support whatever decision you make. I can walk with you, providing midwifery care, emotional support, time and safe space to reflect on the complex decisions you face, and will work as an advocate for you and your baby, working to achieve the best possible outcome in your particular circumstances and in accordance with your beliefs and preferences. I would be glad to meet with you, free of charge and without obligation, for an initial discussion