The Church of England’s Mission and Public Affairs Council has just published a report Valuing People with Down’s Syndrome for discussion at next week’s meeting of General Synod. Mary Cole, mother of a boy with Down’s Syndrome living in Cambridgeshire, offers her personal response.
Our eldest son Ben is ten years old. He plays football and cricket, cycles and swims. He enjoys cartoons, playing Minecraft and other computer games, likes music and reading. Ben has a well-developed sense of humour which tends towards the absurd. He is an expert at annoying his younger brother, is passionate about ice cream and for years has been fascinated by dinosaurs. He also happens to have an extra copy of his twenty first chromosome – he has Down’s Syndrome.
Ben was diagnosed postnatally and at the time it was a shock. This was due in part to the diagnosis being unexpected. Blood tests and a nuchal scan during the pregnancy revealed a low probability of Down’s Syndrome. More to the point, I had absolutely no idea what the diagnosis meant. I had never met anyone with Down’s Syndrome. I had seen an episode of Inspector Frost which featured a character with Down’s Syndrome. This, and the rather dated leaflets handed to us at the hospital were all I had to go on. Things have improved since then. People with Down’s Syndrome are more represented in the media, (although there is still a very long way to go). There are several blogs with the stated aim of raising awareness of the realities of Down’s Syndrome and there are online parent forums which have grown with the rise of social media. None of these sources of information and help were available to me when Ben was born. We were wonderfully supported by friends and family but they were also unsure of what the diagnosis meant for us. Indeed, Ben was about eighteen months old before my first thought each morning ceased to be ‘my baby has Down’s Syndrome’.
Learning to adapt to Ben’s diagnosis has been the most profoundly enriching but also challenging experience of my life. I have had ten years of disrupted nights, do more laundry than would seem physically possible, have a filing cabinet of paperwork just for Ben and a great deal of my time is spent attending appointments. However, Ben touches people’s lives. He attends a mainstream school where his classmates learn more from him about tolerance, patience and acceptance than they ever could from any PHSE curriculum. I don’t mean he’s a guinea pig in a social experiment; he’s a fully integrated and valued member of the school community. We often attend a local community café run by the Methodist Church. It’s mainly attended by young families and older people. Ben loves to play with the other children but also has a genuine rapport with the older visitors, particularly the frailer ones who respond very positively to him. He has a gentleness of spirit which is appealing but I also wonder if the shared experience of needing support comes into play here.
A couple of years ago, Ben had complications following surgery and we had to take him to Accident and Emergency. Shortly after we arrived we were joined by another family who had a baby who seemed quite unwell and was in great distress. Ben adores babies and within a few minutes he had calmed the baby down by playing peekaboo and other distractions. Ben was in pain and unwell himself but he is truly empathetic and always responds with kindness if he sees others suffering.
I could give many other examples of the ‘Ben Effect’. I am not claiming that he is some sort of wunderkind; as I have indicated, he is a very typical child in many respects. He sulks when he doesn’t get his own way, avoids going to bed, hates getting into the bath then won’t get out, argues with his brother and sister and fusses about doing his homework. However, he has brought so much to joy to our family and those who know him in ways we couldn’t possibly have imagined when we were told of his diagnosis.
As a parent, I am delighted this report has been written and that the issues arising will be debated in Synod. It acknowledges that our children are important and that the issues raised are important to the church, the Down’s Syndrome community and society in general. The report is informative. It explains what Down’s Syndrome is and significantly reflects on how the place of people with Down’s Syndrome in society has changed over time—significant because it demonstrates how societal attitudes have a real impact on the lives and families of those with Down’s Syndrome, not just in terms of day to day acceptance, but in areas like access to education and healthcare. If Ben had been born in the same year as me, he would have been deemed ineducable and therefore wouldn’t have the right in law to attend school. His life expectancy would have been twenty-five. Today’s figure is more than sixty. The main reason for this increase is due to improvements in infant cardiac surgery but more saliently for a child with Down’s Syndrome is that they are actually given access to these surgeries when in the past they weren’t.
Non-Invasive Prenatal Testing (NIPT)
Quite rightly, a significant portion of the report relates to the area of Non-Invasive Prenatal Testing. I am painfully aware that debating this opens a can of worms and I will do my best here to reflect on my own experiences as well as some wider issues. NIPT testing is more accurate than other forms of non-invasive testing, such as a nuchal scan. It is thought to be around 98% accurate but can give false negatives or positives and as such can not be regarded as a diagnostic tool for Down’s Syndrome (although it can for certain other conditions). It is an enhanced screening tool, and for a diagnosis to be confirmed, an invasive test such as amniocentesis is required. Invasive tests carry a risk of miscarriage so the high degree of accuracy of NIPT makes it a safer screening tool than those available previously. Currently, the NHS plan is to offer NIPT testing not universally, but to women deemed to have a high probability of having a baby with Down’s Syndrome (less than 1 in 150). It is available privately.
There has been considerable media coverage on the advent of the NIPT test. It concerns me that there seems to be a complete inability or unwillingness to separate out the areas of the pro-life/pro-choice arguments and the disability issue. The two benefit from being kept separate and there are potential dangers in confusing them. Taken to its extreme, several states in the U.S.A. have responded to pressure from pro-life campaigners and made it unlawful to abort a foetus due to a diagnosis of Down’s Syndrome. In my opinion, this does not protect either the mother or baby and I feel for the families who have been affected by these laws. Whilst I think it is unlikely such legislation would occur in the United Kingdom, it’s a salutary reminder of how much care is needed when considering the ethics involved.
Focussing on the disability aspect of the debate, the 1967 Abortion Act states when ‘there is substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped’ there is no legal limit as to when abortion can take place. In other circumstances the legal limit for abortion is twenty-four weeks. In practice, this means it is legal to terminate a baby with Down’s Syndrome up to forty weeks. Given the medical complexities of late terminations, I doubt this is a common occurrence. However, in light of societal and medical developments since 1967, I would suggest now would be a good time to debate this issue when considering the other implications of prenatal testing. It seems to me that this disparity between the legal rights of the unborn baby depending on whether they have a disability or not isn’t well known. The report does allude to this but I feel there is room here for much more in-depth debate.
Why single out Down’ s Syndrome?
Coverage of NIPT and other forms of prenatal screening focusses disproportionately on Down’s Syndrome which unfortunately contributes to a negative and damaging impression of the condition. Edward’s, Patau and Turner Syndromes are also screened by NIPT but this is rarely mentioned. The image above formed part of a report on the BBC News website in 2017 about the rolling out of NIPT testing in Wales. In fairness to the BBC, the image was removed following complaints, but that it was used at all is telling. Observe how it is constructed. The test tube labelled Down’s Syndrome is right in the centre of the picture so it is most prominent, enhanced by the larger size of the test tube. Genetic disease and cancer are portrayed as being less problematic than Down’s Syndrome. If you consult the NHS website about antenatal care, the section on prenatal testing and screening mentions Down’s Syndrome repeatedly and certainly more frequently than any other condition. Again, this implies Down’s Syndrome is particularly concerning and is at odds with the ideal of presenting impartial advice to parents.
In one of life’s ironies, following the combined blood test, our eldest child was deemed to have a high chance of having Down’s Syndrome (much higher than the probability we were given for Ben). We were given an urgent hospital appointment and I had amniocentesis. I can clearly remember how terrified we were, and sadly at no point did any medical professional present do or say anything to allay our fears. When we were expecting our third and youngest child, I visited my GP to arrange for CVS testing. She could not have been more supportive to us as a family when Ben was born. However, when discussing the CVS testing she mentioned that if the test was positive, I’d be booked in straight away for a termination. No debate or discussion. Just an assumption that this was the only course of action and what I wanted.
I believe the report is right to call for women to have access to ‘comprehensive, unbiased information so that they can make free and informed choices (regardless of whether one agrees or disagrees with the provisions of the 1967 Abortion Act).’  I have shared my experiences of not receiving ‘unbiased information’. Admittedly, this was some time ago, and efforts are being made to improve the situation. The Down’s Syndrome Association has a programme called ‘Tell it Right – Start it Right’ which has the objective of working with midwives and other healthcare professionals to ensure parents have ‘accurate and balanced information about living with Down’s Syndrome. This knowledge will assist them to support expectant parents through the screening process by sharing the information in a non-directive manner.’ I believe the only way to firmly establish this principle is for the state to provide mandatory training for all healthcare professionals involved with the prenatal screening programme. It shouldn’t be left to charities.
The part of the report about NIPT repeatedly uses the word ‘risk’ in relation to screening for Down’s Syndrome. This is unfortunate in a report that is in every other respect supportive of people with Down’s Syndrome. The preferred words used by the Down’s Syndrome Association are ‘chance’ or ‘probability’.
Other Issues Surrounding Prenatal Screening.
One thing rarely addressed in coverage of prenatal testing is the effect it has on those with Down’s Syndrome and their families. Many adults with Down’s Syndrome have the capacity to understand the arguments around prenatal screening. Yet their opinions are all too rarely sought or heard. There are concerns within the Down’s Syndrome community that prenatal screening could ultimately result in the condition being completely eradicated. Some countries such as Iceland and Denmark with almost universal screening have practically 100 % termination rates for positive tests and live births are increasingly rare. Interestingly, these countries have some of the best social care provision in the world. I think the influence of economics on prenatal screening has yet to be properly explored. I work in special education and am increasingly of the view that the educational needs of children with Down’s Syndrome are not being fully met either in the mainstream or specialist sectors. However, I worry that resources for research into issues specific to Down’s Syndrome (educational and medical) will be increasingly rare if the number of people with Down’s Syndrome decreases (or is perceived to be decreasing).
The report not only provides a real opportunity to deepen understanding of Down’s Syndrome and to consider the issues around prenatal screening but also to look at inclusion within the church and society at large. This is an exciting prospect. I mentioned that when Ben’s diagnosis was delivered, we were handed some leaflets. One of them included advice about telling relatives and friends and the message was that people would take the lead from us. If we demonstrated we fully accepted our son, others would follow. This proved to be sound advice and the church has the potential to lead the way in social inclusion of those with disabilities. I don’t believe this is happening yet for a whole host of reasons, but this report is certainly a welcome step in the right direction.
 The Facebook page Down’s Syndrome – Raising Awareness Shifting Attitudes and the blog Don’t Be Sorry for example.
 However, The Education (Handicapped Children) Act of 1970 did enable the discontinuation of classification of handicapped children as unsuitable for education at school.
 Concerns have been raised about regulation of NIPT in the private sector. The implications of this are discussed at length in the Nuffield Council on Bioethics report; Non-Invasive Prenatal Testing: Ethical Issues (2017)
 In the 1967 Abortion Act, there is no legal definition of ‘substantial risk’ or ‘serious handicap’.