Valuing people with Down’s Syndrome: a parent’s response

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[1] 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.

The Report

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.[2] 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.[3]

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.[4] 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.[5] 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).’ [6] 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.’[7] 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).

An Opportunity

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.

[1] The Facebook page Down’s Syndrome – Raising Awareness Shifting Attitudes and the blog Don’t Be Sorry for example.

[2] However, The Education (Handicapped Children) Act of 1970 did enable the discontinuation of classification of handicapped children as unsuitable for education at school.

[3] 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)

[4] In the 1967 Abortion Act, there is no legal definition of ‘substantial risk’ or ‘serious handicap’.


[6] Valuing People with Down’s Syndrome. 2018. Paragraph 36


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21 thoughts on “Valuing people with Down’s Syndrome: a parent’s response”

  1. What a wonderful article – personal, well-informed, balanced, honest, clear.

    A couple of reflections:

    1) Can we really separate the issues of disability and abortion here? After all, to seek equality in the rights of the unborn assumes that they have rights (or at least that we have duties towards them), which is the very issue at stake in the abortion debate. It would hardly seem satisfactory to equalise rights by permitting abortion up to birth in all cases, for instance. Also, I don’t understand the claim that banning abortion on grounds of disability fails to protect mother and baby – can this be explained more fully?

    2) I have huge respect for parents who care for disabled children, and the additional burden disability places on parents means I understand why we have the unequal laws that we do, even while I strongly disagree with them (it is essentially eugenics after all). I think we need to be honest about this additional burden, which is why I think it’s hard to oppose the unequal laws without underpinning the opposition with a commitment to the right to life/inherent value of the unborn human being. If we don’t have a general duty to the unborn, it is hard to help parents understand why there is a duty to bring to term a disabled baby, when there isn’t a duty to bring any baby to term. While if we assume it is simply about what the parents want it is difficult to argue against having more permissive rules for aborting babies which will impose much greater burdens on them. (Incidentally, I’m in favour of keeping language honest and so I think ‘risk’ is an appropriate term for describing probabilities of birth defects. I appreciate this does seem disrespectful to those who suffer with them. Equally, though, the term ‘risk of failure’ seems disrespectful to those who have suffered whatever failure is being referred to, but I would still regard this to be an honest use of language.)

    • Thank you for your response. You raise some interesting points. I wanted to draw attention to the way in which coverage of screening often doesn’t address the disability aspect of the abortion debate because it is often quite focused on the pro-life/pro-choice arguments. For example, expressing disquiet about the NIPT testing has been portrayed in some quarters as an attack on the women’s right to choose and all the arguments that go with the pro-choice viewpoint. In fact, there are those within the Down’s Syndrome community who are strongly pro-choice but have very real concerns about NIPT because of the long term implications and whether it could in fact lead to the eradication of the condition. A number of people with this viewpoint contributed to the evidence gathering for the 2017 Nuffield Report on NIPT.
      In terms of the legislation in some states in U.S.A. where abortions aren’t allowed on the grounds of a prenatal diagnosis of Down’s Syndrome, I was expressing a view that this situation is potentially damaging for both mother and child. Any course of action by the mother in this situation is going to be life changing , whether it’s keeping the child, having it adopted or finding ways of circumventing the abortion laws. I know mothers who have been deeply affected by making precisely this choice one way or the other. For them it was a profoundly difficult experience, even with the possibility of a choice. Being faced with this situation without being given a choice could be very damaging to the mother’s well-being. Similarly, an unwanted child with Down’s Syndrome may not experience the best outcomes.
      I wasn’t aware of the law in the UK relating to post 24 week abortions for children with disabilities until I saw Sally Phillips’ documentary ‘A World Without Down’s Syndrome?’. I was trying to make two points here; I think people need to be more aware of this disparity, and given the abortion act is now fifty years old, in light of changes in society and medicine, now might be a good time to review this aspect it.
      I stand by my reservations about the word risk. The report calls for women to be able to access information which is unbiased. (Paragraph 36). Using the word ‘risk’ is not unbiased in terms of presenting the possibility of a diagnosis.

      • Thank you for your thoughtful response.

        If I understand your position correctly you are not endorsing a right to life or duty to the unborn, but rather wish to support women (or parents? we often seem to assume all the choice about childbearing is the mother’s) in making a choice about whether having a child with Downs is something that they would want? And you oppose the unequal time limits for abortion and disability as a simple matter of discrimination, or perhaps because of projected long term effects on disability rates and social support for those living with disability?

        The difficulty with this position is that it still makes the life of the disabled contingent on being wanted by parents, which is not a secure or ethical basis. It somewhat begs the question of why we have any limit on abortion, if there is no duty towards unborn human beings. If the disparity is the only concern why not loosen abortion law for everyone rather than tighten it up for disability? Would you endorse that? If not, what justification would you give?

        I’m not sure how the outcomes experienced by an unwanted child with Downs could be worse than the pre-natal extermination which is the alternative on offer. Your argument that women must have a choice because to face a pre-natal diagnosis of Downs without one could be ‘very damaging to the mother’s well-being’ seems to contradict your position that we should not speak in terms of Downs children being burdens. In any case, if our concern is the mother’s well-being in having an unwanted child, should we not be like the US and permit abortion up to birth for all? The logic of your position does not seem to offer any rationale for limiting abortion at all.

        Perhaps though your real point is that parents should be encouraged to consider whether they might accept or welcome a disabled child? If so, I think that is admirable. But without a pro-life foundation I think it will have limited success, since in a culture where people are permitted to abort babies merely because they will inconvenience them, it is hard to see why many will opt nevertheless to take on the even greater ‘inconvenience’ of raising a disabled child.

        • ‘Extra level of responsibility’ is a more helpful way of thinking of what’s involved in raising a disabled child. Raising any child involves taking on responsibility. The responsibilities for parents of disabled children are a bit different. This frames by response to the points raised.

  2. I am sure Downs people are nicer on average, and have a better way of looking at the world, in the same way that Aspergers people are brighter on average. Absolutely loved working with Downs pupils when at school.

    • People with Down’s Syndrome and Aspergers both belong to very diverse communities. Thank you for sharing your enjoyment of working with people with both conditions.

  3. Our daughter is 9 and also has DS. She was diagnosed postnatally too.

    One of the issues in this discussion that I find a constant challenge is the language of ‘suffering’ (and secondly the notion of ‘burden’).

    A diagnosis of Down Syndrome is a simple genetic one. The diagnosis itself tells you very little about the child with the diagnosis.

    There is a list of potential medical problems associated with Down Syndrome that appear more commonly amongst this group of the population.

    When our daughter was born we had no more idea about her personality, strengths, weaknesses and challenges than our ‘typical’ son.

    The only things either of them have ever suffered from are the same illnesses and ailments as anyone else.

    My daughter has been closely monitored thanks to all the research into Down Syndrome that has taken place.

    Like the young man in the story, she is fully included in mainstream school – and community activities (swimming, Beavers, dance). She is a fluent and competent reader, she is doing well in all other academic areas too and is preparing for transition to mainstream secondary school.

    She adds value wherever she goes. She notices details – she notices if people are absent or have returned. She greets people with an enthusiasm and delight that warms the heart.

    She is funny, imaginative, inquisitive and determined.

    I asked her if she suffers in any way and she replied that her brother is annoying. She sees herself as an equal and rightly so.

    She is not a burden – can anyone predict if their children will need extra support in any area or if they will contract a disease? She is who she is and she is just as human as anyone else. I fear for the day I have to explain to her that many people don’t think she is equal or as valuable and, in fact, there is an active process in place to eliminate people like her.

    • I share your disquiet about using the words ‘burden’ and ‘suffering’ in relation to our children. I love your daughter’s response to being asked if she suffers!

  4. Mary Cole quotes:

    “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”

    Yes the statement is valid but could easily be misinterpreted on a cursory reading.

    Better to remove the “98% accurate” figure entirely because if you do give it then you should also give the percentage of false positives and the incidence rate of the condition.

    (This is to enable Bayes Theorem to be used to evaluate the probability that Downs syndrome is present given a positive test result.)

  5. I couldn’t find any data on false positives and negatives, possibly because NIPT is in the early stages of being rolled out. I mentioned the statistic to emphasise NIPT is a screening tool rather than a diagnostic test as some people seem to think.

  6. Not wanting to belittle the enormous choices and dilemmas different parents have made nor make glib statements about the undoubted commitment that parents who have cherished and invested in their children have made…. However there is a beautiful young couple in our community who got married last year who I met last weekend as they attended Sunday morning worship at our church. (I believe they are still exploring to find the right place for them.) As it happened my teenage sons were working at their wedding reception last year and they testified that it was just the most fantastic celebration of the grace and love of God as well a huge statement of the worth of all God’s children. I don’t know either person’s parents directly and they don’t know me but I know through friends of friends their parents have been passionate about supporting and affirming them in ensuring they can enjoy life in all its fulness. I say this as someone who has stood there at the second scan of all 3 of my kids wondering ‘what if…?’ when the nurse asks whether you want to know the risks of the unborn child having the extra chromosome. However, watching these young people worshipping on Sunday morning has convinced me that whatever the current ruling on diagnoses that merit pre-emptive terminations, Downs shouldn’t be on the list.

  7. I write as the dad of two young adults who will never (1) or may never (the other 1) be able to look after themselves in any meaningful way. My wife and I are both over 60 – the question is not “have we been willing to accept the extra responsibilities up till now?” but rather “who is willing to take over for the next 60 years?” In our case it’s autism rather than Down’s Syndrome (DS). Is it also the case that a significant proportion of adults with DS cannot and will not be able to look after themselves? I get the feeling that individual happy stories are creating too much positivity here.

    • The present crisis in adult social care is very real. I wouldn’t argue that the greatest worry for any parent with a disabled child is what happens when we are no longer here. Some adults with Down’s Syndrome and Autism will need high levels of support throughout their lives. Some thrive with less support. Too much negativity is actually very damaging. Forty years ago, educational ‘experts’ believed children with Down’s Syndrome were incapable of learning to read. As a consequence of this, they weren’t taught.

  8. Well done Mary for even writing this. It was enormously encouraging for me to read it and what you have written was well worth it even if I suspect that you might have found it difficult to write something so personal to your family.

    You mentioned that abortion could happen if the child would be “….seriously handicapped.” The key word here is “seriously” and it is that word that is open to misinterpretation and misrepresentation. Perhaps it would help if the Church were to say that Down’s syndrome is NOT, of itself, a serious handicap and only other factors can make it serious.

    However, I am not a doctor and what I am suggesting here is a concept or idea instead when faced with countries like Iceland where they proudly say there have been no down’s syndrome births when what they really mean is that they have extensively used abortion. By contrast I have a copy of Sally Phillip’s item “A World Without God” on my computer!

  9. Thank you for your encouraging response. It was indeed difficult to write this but I am so pleased C of E report has been written and that Synod will be debating the issues raised.
    The Abortion Act doesn’t specify what ‘seriously handicapped’ means. Perhaps this needs to be vague, but as I say, much has changed within medicine and society since the Act was passed in 1967.

  10. Thank you for this and thank you, Mary, for sharing and for engaging with th comments which really helps to clarify/expand on some of what you said.

    A few thoughts:

    Suffering – suffering is a subjective experience and you can’t presume it to be constant/present/absent for someone just because they have a diagnosis or set of circumstances that you think you would/wouldn’t find difficult. We all suffer at one ttime or another to some degree or another but as Rachel’s daughter pointed out it’s not always what you think. I have a disability and it’s frustrating when people assume that that means that I am in a continual state of suffering and if I appear happy it must be because I’m putting on a brave face.

    Choice – I really think that when it comes to a choice between continuing a pregnancy or not on the basis of any diagnosis the developing baby may or may not have, it’s a choice it’s better not to have. I think it would be better if the energies of all were directed at supporting the parents to prepare for and parent the baby that’s coming rather than identifying and terminating lives that might be deemed not worth living or not worth caring for. I am a bit ambivalent about the campaign to improve the understanding of Down’s Syndrome because of the NIPT. It is great to see people with DS having their voices heard and their lives celebrated but it is a bit sick that it’s being done because lives literally depend on their being able to convince others that DS lives are worth living.

    Grace – I’m not sure what the purpose of the Synod debating this issue is but I do hope that they will provide leadership to the church to follow Jesus in loving and accephing all human lives based on God’s love and not the perceived worthiness of the life.Also I think we need to work on living the truth that ALL Christians are called to serve and have resources and gifts to build up the church. People with DS and other diagnoses/disabilities are there to minister as well as to be ministered to.


  11. I agree that the presumption of a continual state of suffering is problematic. I am uncomfortable when people are described as ‘suffering’ from Down’s Syndrome. My son, like everyone else suffers at times because this is part of the human condition, not because he has Down’s Syndrome.
    My husband and I often reflect that we are glad we didn’t know pre-natally of Ben’s diagnosis. Indeed, it wouldn’t have been picked up by NIPT as he had a fairly low probability of having the condition. I think being given access to unbiased information if a pre-natal diagnosis is given is key. Ben attends a Down’s Syndrome clinic at a local hospital where there is real expertise regarding the condition. I am aware that this extends to their care of families given a pre-natal diagnosis. Parents aren’t given a just given worst case scenario in terms of potential medical complications (fairly common practice in the past), nor are they given an unrealistic impression which avoids the challenges involved in raising a child with Down’s Syndrome.
    I believe the report and debate in Synod are to be welcomed because it will hopefully promote better understanding of the condition within parishes and there is work to be done here. I mentioned that before Ben was born, I’d never met anyone with Down’s Syndrome. Many clergy, ministry teams and congregations won’t have done either.

    • Certainly till recently, I believe that there was a significant (under 10% but…) chance of babies miscarrying because of the actual prenatal test itself. The babies in question would otherwise most likely have been born, and many of them would have been born ‘normal’ whatever that means. So the test itself has a significant level of harm; obviously, still more importantly, it is also based on a wrong premiss: the very idea of testing whether your pending child is kosher or not.


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