Earlier this month I came across a blog indicating that the UK’s Department of Health is grossly under-reporting the true number of pregnancy terminations for Down’s syndrome. This raises a red flag because the accurate monitoring of birth and termination numbers is important for assessing the impact of national screening programmes on the birth prevalence of Down syndrome. It is a requirement under Article 31 of the UN Convention on the Rights of Persons with Disabilities.
The UK National Down Syndrome Cytogenetic Register (NDSCR) was set up in 1989. It holds anonymous data from all clinical cytogenetic laboratories in England and Wales of cases of Down syndrome diagnosed prenatal or postnatal. Its’ 2010 annual report was published in December 2011. The 2010 data is revelling. Of the 1,868 pregnancies there were: 715 live births (38%), 1,099 terminations (59%) and 54 still births/miscarriages (3%).
Such a high termination rate is a concern and is indicative of an underlying attitude of negative bias from the medical community and discrimination.
What is really interesting about this data though, is the breakdown between prenatal and postnatal diagnosis presented in Table 1: for the live births, 91% were diagnosed after birth and 9% prenatal, and of those diagnosed prenatal 93% were terminated and only 5% went on to a live birth.
Also, according to this 2009 report in the British Medical Journal the number of births of babies with Down syndrome in England and Wales between 1989/90 and 2007/08 should have increased by 48% due to increasing maternal age. Because of antenatal screening and subsequent terminations they increased by only 1%.
This all indicates that the national screening programme in the UK is mostly being used for the birth prevention of babies with Down syndrome, rather than birth preparation or life affirming care. So when we hear the spin about this being a health initiative, the reality is that it is rarely being used for any life affirming care, or birth preparation. This is not really a surprise. I have discussed before the absence of therapeutic benefit and the eugenic nature of national screening programmes for Down syndrome.
Here in New Zealand, there is a similar trend. Our Ministry of Health decided to stop collecting termination data at the same time the new screening programme was introduced in 2010. This makes it a little harder to track the impact of the programme and is a classic case of social engineering on behalf of our government. But by looking at the number of births of all babies and those with Down syndrome and then comparing these to the natural birth rate for Down syndrome based on maternal age (i.e. without prenatal intervention) we can get a good idea.
Using the available data the New Zealand termination rate is around 55% for all pregnancies involving Down syndrome (the comparable base termination rate for all pregnancies is 21%). Worryingly, the National Screening Unit has advised that approximately 55% of pregnant women commence screening, which indicates that almost all diagnosed cases are terminated and all births were not screened. I know this is not quite correct because I know of several mothers in New Zealand who had a positive diagnosis and went through to birth, but it is clear that these cases are rare.
The situation in the US is similar, as outlined in this excellent blog by the International Down Syndrome Coalition – what exactly is the termination rate for babies with Down syndrome? This indicates a 50/50 split of births and terminations for all pregnancies involving Down syndrome in the US.
Turning to the other European countries, a 2008 report by the pleasant-sounding EUROCAT (European Surveillance of Congenital Anomalies), maps out the state of prenatal screening in Europe in 2004. There is an excellent summary table here. For the 12 countries surveyed, the average termination rate is 60% for all pregnancies involving Down syndrome. The average termination rate, where there is a positive diagnosis is 88%.
In Switzerland 87% of all pregnancies involving Down syndrome are terminated. In France it is 86%. That is getting close to having little, or no, births of Down syndrome in those countries. (Their termination rates, where there is a positive diagnosis, are 91% and 96% respectively, and they have very high uptakes rates for screening).
In 2010 the delightfully named ICBDSR (International Clearinghouse for Birth Defects Surveillance and Research) carried out a study to assess the impact of elective terminations on the birth prevalence of Down syndrome – see page 8 of this report. The prevalence of Down syndrome at birth decreased in the majority of countries where data was available over a 16 year period.
The real message behind all the international data is that there is a widespread social view that the lives of those with Down syndrome are of less worth than their brothers and sisters. And that points to discrimination.
But it is more than discrimination. The data reveals a clear pattern of a widespread and systematic programme of birth prevention directed towards the Down syndrome community at an international level. That is why we have our case before the International Criminal Court, because this is persecution and eugenics against our community on a global scale. The impacts of this are likely to be significant if the situation is not addressed. Impacts could include the long-term adverse social effects on people with Down syndrome as their lives are devalued through selective terminations. This could lead to further insecurity and entrenchment of attitudes of discrimination towards them with the danger of a vicious circle of reducing birth prevalence.
The facts tell us that now is the time to act for social justice for the global Down syndrome community.
Extremely disquieting.
I want to cry- I want to be angry- I want to shake people awake! I want them to meet my Bethany who is the best thing I never knew I wanted!
Bethany wont change their minds. Neither will my daughter, or any other child with Down Syndrome. They dont want one like ours. Thats alll there is to it.
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So sad-people just don’t know what they are missing out on. 1 in 660 babies have DS so if it happens to be you who is expecting the baby with DS that’s the way it is and for me I very soon learned that it’s not the disaster everyone said it would be (particularly the doctors, midwives and geneticists while I was pregnant but also society at large in its general discrimination and prejudice against DS). I can’t tell people enough how THANKFUL I am every single day that I did not abort my son. At 18 he is gets told everyday by me how LUCKY I am to have him (and I guess that’s out of relief that I didn’t go down that “termination track” I was being pressured to). This young man has all those fabulous human qualities of unconditional love! He’s also non-judgmental (ironically), he’s accepting of all, he’s very funny, AND he has an extremely high Emotional IQ. He also gets annoyed and upset as any other human being does (though come to think of it-not that often). I don’t know-it’s just so painful to think that if this trend continues the world will be bereft of people with DS and that is just so fundamentally wrong.
Hugs to all people with DS out there! We support you!!
@ Cindy Love it – the best thing I never knew I wanted! I feel the same way about my little boy with Spina Bifida who has been a life lesson wrapped in (well mostly plaster casts to be honest) but love, fun, giggles, mischievousness – a regular little boy who just happens to have a medical condition that labels him prenatally as ‘problem baby, child and adult’. Our kids are worth more than that.
love that “the best thing I never knew I wanted”-that’s it in a nutshell!!
Thanks for the article. It was difficult for me to read because it saddened me that all those children did not have a chance to be born and make a positive impact with everyone they meet, just like my Johanna does. DS is so misunderstood and misrepresented by the medical field because our kids are not just stats, they are great people with incredible personalities that are here to teach and remind us the best lessons in life.
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I worked for many years with children with multiple disabilities from ages ranging from 2- 19 A pleasure to work with and care for. They are blessed and so precious. Through the years the number of children with Downs syndrome where dropping, we all knew this was because of abortion. We were the losers as we missed their happy sweet personalities, these children brightened our days. Like all children they could be a handful at times but isn’t that just children.
God bless all you parents who chose life for your precious children.
Yes, and God bless all of those people who didn’t choose to continue an unwanted pregnancy too. Their choice was just as tough, and just as considered.
Bearing in mind that women who enter the screening pathway already have a wanted pregnancy, otherwise they would have sought a termination. Unless, it is about wanting to be pregnant, but not with a particular child.
God bless the decision parents made to kill their children? Why on earth would God bless that? I have empathy for their difficult decision, for the angst they must have suffered. I understand that they are the product of the culture of death in which we live, but to bless them for their decision to kill a child is even worse than blessing someone for abusing their child because it was a “tough decision,” something I doubt you would condone.
A foetus isn’t a child: it is a bunch of cells with the potential to become a human. You might as well campaign against masturbation: isn’t every sperm sacred too in your bizarre philosophy?
hysterical weirdo
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I fear what I would have done if I found out while I was pregnant. This fear has inspired me to write an article, establish a first-call program through Christian Life Resources, and become a DS-Ambassador for the National Down Syndrome Society. I will be giving a presentation on the blessings of having a child with Ds in a couple of weeks, too. People have been given the wrong information about Ds for years. They have been trying to eliminate it all together for generations. Very influential people in this country supported eugenics policies in an effort to rid society of its defectives. I will use my dying breath to stand up for people with Ds. I have been blessed with a son with Ds, and he is the light of all of our lives. The facts doctors share with new and expectant parents is based on archaic data and severe prejudice. I will not allow my son to be discriminated against. I have had him evaluated on several occasions to assure his pediatrician that I am not in denial. Max is 2 1/2 and hasn’t been to therapies. I play with him at home, and he is as typical as any two year old. It has been determined and documented that he does NOT have special needs. The therapist that evaluated him offered me a babysitting job, because her daughter, 8 months older than Max was not doing as much. Max knows all of his letters, counts to 10, knows some colors, sings songs, brings me books by name, and loves to play with blocks and cars. He is a toddler. Parents have got to stop second-guessing themselves, because it is only going to short-change their children. Play with them, and make learning fun. Max has no idea I am cramming him full of fundamentals when we are singing the ABC’s. All children are a gift from God and the ALL deserve to be cherished.
Thank you for being a voice Lisa and we will stand with you.
So they do. But we aren’t talking about children; we are talking about a bundle of cells that has about as much biological and ethical significance as a field mouse: and I suspect that is where you and I will agree to differ.
My daughter was born at 32 weeks and is a healthy 5 year old girl. Many countries provide for abortion up to, and during, birth for Down syndrome. My daughter was not a “bundle of cells” when she was born, it would be incorrect to suggest that she is the ethical significance of a mouse, so that is a not a sound rational argument.
Sir, I’m trying to follow your website and gain an understanding of these people, I really am, but I feel like you are being medically inaccurate. Please, explain how someone can receive an abortion during birth? I live in the U. S and our abortion laws vary by state, but I have never heard of such a drastically late-term abortion.
I am talking about women who would have otherwise kept their children. I don’t expect my children to be perfect; just plain awesome. These “bundles of cells” are extremely significant in my mind. I fell in love with both of my children in the womb.
These days most people only have one or two children, and there is a massive lifelong expense and commitment to each child. I’m afraid that designer babies are now part of the modern lifestyle, as much as boob-jobs: that only makes those babies who do make it much more special. Our children with DS will not go on to have children of their own, and ‘the selfish gene” governs much of our subconscious decision taking. We all want grandchildren. I can’t mourn the unborn, and I cant find it in my heart to blame any parent who makes a tough, and considered decision, following much agonising thought.
I disagree with your way of thinking but I know what you are saying and you make good points. Whether you feel that way or not, society does. Regardless, I think the main issue is that people are uneducated on what Down Syndrome really means. Sadly, many people cannot love a child they don’t feel is perfect. In our situation, our daughter with DS hasn’t required anything more than 3 extra doctor’s visits per year and therapy sessions that serve her as hour long play time. These are free and honestly are things parents should be doing with toddlers whether in therapy or not. Of course, every diagnosis and individual with DS will vary in “severity” but NO child is guaranteed to be born and live their lives with no setbacks or issues.
My point is, should these people really be having any children if the thought of a little extra love and care is so frightening that they abort their children?