DS Screening: A Few Cautionary Thoughts




eu·gen·ics

 [yoo-jen-iks] 
noun used with a singular verb  )

Eugenics is the applied science of the bio-social movement which advocates practices to improve the genetic composition of a population.

Many countries enacted various eugenics policies and programs, including: genetic screening, birth control, promoting differential birth rates, marriage restrictions, segregation (both racial segregation and segregation of the mentally ill from the rest of the population), compulsory sterilizationforced abortions or forced pregnancies and genocide. Most of these policies were later regarded as coercive and/or restrictive, and now few jurisdictions implement policies that are explicitly labeled as eugenic or unequivocally eugenic in substance.




Can you imagine someone telling you that one of your children has less value put on her life as the other? Not just less value, but in fact no value at all, in fact her existence is seen as something to be avoided at all costs?

Can you imagine being asked to put a value on your unborn baby's life based on the fact she will be a little different and asked to decide if hers is 'a life worth living'?


Can you imagine someone telling you that it was a 'mistake' that your beautiful, happy child was born in the first place? Asked in assumptive way why you didn't have any testing?


Can you imagine hearing that the world is trying to quite literally 'eradicate' children like yours forever?


Parents and families of children with Down's Syndrome don't have to imagine. This is what the media and certain sections of government and the medical profession are telling us all too loud and clear, albeit indirectly.


Press Release Last week, the '98.6% accurate' blood screening test, developed by controversial Professor Nicholaides of Kings College (similar to the jauntily named MaterniT21 Plus privately available in the US - it actually makes me feel queasy that they have mixed the word 'maternity', with T21 to produce a fluffy name for a test that will ultimately lead to the termination of hundreds of babies with Trisomy 21), was announced to what can only be described as jubilation from the nation's media, who reported that we might soon be able to 'completely eradicate Down's Syndrome' along with Edwards Syndrome and Patau Syndrome. I saw not one story giving a balanced view, or one that contained all the facts. Prof N had carefully orchestrated these stories with a press release that omitted the facts that he was far from ready to launch his test, that it still needed invasive techniques to confirm a diagnosis. Thankfully.

Video clips of joyous and relieved parents who were considered 'at high risk' of having a baby with Down's Syndrome were shown receiving the 'good news' of a 'negative test result'.
Since that time share prices in the company that developed the US blood test, Sequenom, have risen by 11%.




The Test Myth
Firstly, let's get one thing straight. This test isn't designed to prevent babies with Down's Syndrome from being conceived or to 'cure' them. It is not an 'illness' that you can prevent.  That is not possible, even if anyone would want to do such a thing.
This test is simply designed to detect them. The 'eradication' part comes in the form of termination/ abortion. It's as simple as that.

I don't have an issue with the test itself, it is the way it is implemented and its part in a wider organised 'Decision Planning Strategy for Down's Screening' by the government (I quote Dr Poulter of the FASP). Screening does what it says on the tin. Our children are being slowly screened out, like substandard fruit on a conveyor belt. Some would call it a Seek and Destroy Mission.

Such tests are offered to parents 'for their peace of mind'. But any test only gives you peace of mind if you hear what you think you want to hear. In 2004 a Health Technology Assessment stated that all antenatal screening raises anxiety levels, regardless of the results. Very little information is given before, during or after. A quick glance at onlie parenting forums will confirm the stress levels of Mums as they wait for their results.

What the test has in its favour is that it is less invasive and safer for mother and baby than CVS or amnio. Historically anywhere from 1 in 50 to 1 in 100 invasive tests would result in a spontaneous miscarriage. (Notice that I don't state whether these miscarriages were of healthy babies or not, because I don't think it matters. The value of life is equal.) 

That would be fine you might say, parents can have time to adjust, read and learn about the condition, contact support networks, meet other families, prepare themselves for the arrival of their gorgeous new baby. Those that decided they simply couldn't cope after much soul searching and having been given time to learn about the realities of Down's Syndrome would have time for an early termination.



Choice?
However the figures suggest otherwise. 92% of all pregnancies where there is a diagnosis of DS are terminated. Does that sound like people are being given a true choice? I would argue that choice is actually being removed, the choice to continue with a pregnancy is being removed. Often it is never mentioned, termination is almost universally automatically assumed.

Now I am believer in a woman's right to choose a termination after being given unbiased facts so that she can make an informed choice with full support but this is not happening. I attended the Parliamentary Inquiry into the Disability Abortion Law (read my evidence here) and an unsettling pattern emerged. This is not a religious matter, but an ethical and moral one and it doesn't matter what your opinions on abortion are. The following paragraphs contain quotes from that meeting in Westminster.





Anecdotal Evidence
'At point of diagnosis two leaflets are routinely given, one on CVS (this will dissappear after MaterniT21 is fully rolled out) and the other on the termination process.' 
Where is the 3rd leaflet about life with a child with Down's Syndrome? Does anyone get offered the change to meet a family? One woman was told not to contact the Down's Syndrome Association as 'they are pro-lif'e. A total nonsense, the DSA aim to support everyone, whatever their decision and at whatever stage of the Down's Syndrome journey they are on.

Parents report feeling supported until they made a decision to continue with the pregnacy, and then support was withdrawn, leaving them feeling like 'naughty school children who had done the wrong thing'. One mother was told by her consultant that he could no longer treat her if she chose to continue with a pregnancy if 'it had a foetal abnormality'. So, women who continue their pregnancies are being discriminated against and treated differently. They are not being offered the same level of care.

Terminations are being offered for the day after a diagnosis. 'I can book you in for the morning'. no cooling off period.
You get more thinking time to mull over a double glazing purchase than that!

‘I do know women aren’t being given balanced information at the point of diagnosis in order to make informed choices, and are left with little or no support or counselling during testing, after diagnosis, before termination, after termination, if that’s what they choose…Worse still, even after a decision to continue with a pregnancy, couples are being asked if they 'are sure' at each scan or medical appointment, and are being reminded that a late termination can be arranged. I know families that have had to insist that notes are written across the top, a large banner, ‘please do not ask me any more about this’. 

‘The assumption is, if you get that diagnosis, you’re going to terminate your pregnancy, and that’s where everything is being pushed, in terms of information, in terms of support. You get plenty of support around a termination. There isn’t other support.’ 





To be clear, an abortion 'up to and including during birth' can currently legally be arranged in the UK if the baby is at risk of being 'seriously handicapped', and old law from '67 that is being overhauled at the moment. It would seem some doctors are offering this option to parents of babies with DS. Even if this is only happenig pushed, in terms of information, in terms of support. You get plenty of support around a termination. There isn’t other support.’


Worse still, figures for terminations for the reason of DS are being fudged for whatever reason (as are those for cleft lip and palate and club foot). The cytogenic centre who note the amnio results recorded twice as many in a year as the Dept of Health. Interesting. 

Terminations for Cleft lip and palate are hardly ever recorded, but a facial surgeon stated that he was almost out of a job because he just wasn't seeing these babies being born any more. Shocking.


The Down's Syndrome Lie 
Now I for one don't know what we would have done, in a place of fear and ignorance, if the doctors we trusted implicitly had advised us to terminate had we known our baby had DS, if they had told us 'our lives would be ruined' that 'it would be unfair on our other child'. This is the one and only syndrome, disability or chromosomal condition on every parent's lips. Why is that? I fear Down's Syndrome is just the very visible tip of a much larger iceberg, with adults with non specific learning disabilities now being swabbed to look for genetic patterns to enable earlier diagnosis. We can all see where that ship is heading.





You see there is a veil of fear and mystery surrounding Down's Syndrome, one that I try very hard to remove through my blog and Natty's modelling and so on. I too was afraid of the unknown when Natty came into our lives, having been brought up in 70s Britain where those with learning disabilities were segregated. I thought it was a veil of ignorance on the part of many medical professionals too, assuming their patients would want terminations through their own lack of knowledge and outdated perceptions of Down's Syndrome, putting the diagnosis on a par with terminal cancer, but the Inquiry unearthed something more sinister. It very much seems like lies about Down's Syndrome are very convenient.

It seems that keeping prospective parents in a place of fear and worry, leading them to believe that a child with DS will be doomed to a life of 'suffering' and 'misery', being 'afflicted by' the condition, reliant on constant support, defined by their limitations, mocked by others, makes it easier to present termination to them in terms of 'euthenasia', for the 'benefit of the child and to ease the burden on them'. 


 Language commonly used is anything but unbiased and neutral in one.


RISK        BAD NEWS        SUFFER        NEGATIVE TEST RESULT        I'M SORRY FOETAL ABNORMALITY        CHROMOSOMAL ANOMALY       SCREENING       
IT       ABNORMALITIES






Our Story
I am thankful that we didn't know that our baby had Down's Syndrome. I am thankful that our wise midwife, who had seen it all, steered us away from invasive testing, advising us that we should make a list of all the reasons why we thought we couldn't cope with a child with DS. I guess my list was short before I dismissed it out of hand, but I recall putting that I wasn't sure my marriage would survive on it and that we wouldn't be able to travel again. How very wrong I was on both counts, and how silly that sounds in hindsight.

Don't get me wrong, there are challenges, and days of dark worry as a parent of a child with DS. Extra help and support takes time and patience but it soon becomes part of your routine.  Looking ahead to ensure her independence as an adult is not something most parents of a 6 year old contemplate.
People do look, but never out of malice. I never see staring, only people who want to get to know us and our delightful girls better. Yes there are somtimes insensitive questions, but never intentional is ill meant.


History and Future of Eugenics

The facts, figures and consistent anecdotal evidence are all pointing in one direction, and that is a co-ordinated attempt to prevent those with Down's Syndrome from entering our society. And that, is Eugenics, which is of course what Nazi Germany was infamous for, although as an ideology it was first created by British Francis Galton.  Hitler's Eugenic programmes started with the extermination of children with disabilities, although this is not often raised in discussions about the Holocaust, almost as if these individuals didn't count as much as the Roma, the homosexuals or the Jewish communities that also suffered under his regime. Apparently the media and public are far less enthusiastic about MaterniT21 type tests in Germany. History has taught them a lesson or two.

Britain's link with eugenics has been an embarrassment that has been oft hidden in the closet, but yes it was there and it very much seems as if it still his here, albeit dressed up in a nice palatable, sanitary way that is designed to give each family their standard issue two children. If one is defective, they can be removed and replaced with a 'typically developing one' and feel rest assured that this replacement child will have a better life than the other would have had. Where did this become the norm along the way? Why didn't we realise we were being led down this path?


In summary £30 million is spent on screening for DS and terminations each year in Britain
Yet a mere £500K is spent on DS research (much of that, the DSRF UK informs me, is on developing screening tests themselves). That's a lot of money on what was hitherto a very risky procedure. My question is why? And why this particular Syndrome? I can only think it must only be for perceived monetary reasons.

A study carried out in Queens Hospital Staffordshire in 2004 concluded that screening for Down's Syndrome was unethical. We have laws protecting disability equality after all. We are supposed to be a civilised society.



The Impact 
I often wondered why we see so few other children like Natty. How on earth will we explain that to her as she gets older? To her sister and cousins, her nephew, when they learn that her extra chromosome, that makes her so uniquely 'Natty' is the reason others choose not to bring a much wanted baby into this world?

Of course fewer children with DS also impacts on support networks and role models for our children; the fewer babies that are born, the more isolated the rest of the community will feel.

And adults with DS can read. They do read the newspapers and watch the TV headlines hailing this miracle 'advance' in medicine.

We must however bear in mind that some parents opt out of testing altogether, as my brother and his wife did. They were met with confusion from their consultant, a 'tumbleweed moment' as they described it when they told him. Others report having to make up religious reasons for not wanting it in order to satisfy the questions of their midwife. Now with MaterniT21 about to become readily available at around 10 weeks gestation, fewer than ever will actively opt out.

What will parents too afraid to embrace DS miss out on? What extra dimension will their communities lack? What lessons will they never learn about themselves and what alternative view of the world will they never be party to? Life without Down's Syndrome would be unimaginably uniform, dare I say it rather dull.


My husband and I attended our (mainstrem) school sports day last week. We watched proudly as both girls laughed with friends and took part in every event alongside their peers. As Natty ran down the 100m straight, far behind her long-legged peers, she beamed from ear to ear and waved at the crown as she went. They clapped and cheered as she passed, many with tears of pride in their eyes. I don't think one person in our community could imagine life without Natty, her comedy timing, her hugs when others' tears flow, her selfless take on life ( 'I want a heart and a star for my birthday'), the way she lives utterly in the moment. The way she sings her requests for snacks, the fantstic costumes she dresses in sometimes at midnight, her loyalty to her friends, her boundless enthusiasm for school and her teachers, her ability to stop any baby crying at 50 paces, her intuition and sensitivity, the way she tells complete strangers not be sad (so often they tell me they have been ill, or have lost their job or have had a row with a spouse and that she has lightened their day), the way she knows exactly how to irritate her sister, or sniff out a cake, or have a room captivated, all eyes on her. The way she makes me late for everything because we have to stop and chat, or smell a flower, or sing Mama Mia again.



The True Value of Life And that is the true value of life. Not monetary cost, nor how much support you need or how dependent you may or may not be one day, nor how long you will live, nor whether you will have children or not. Aparently the powers that be measure our worth in QALYs , that's Quality Life Years. Funnily no-one that decides what these are actually walks in the shoes of any of the people it presides over. 

Both of our girls have taught me to be a better person, and of worry, pride and true unconditional love.
Natty has taught me the value of inclusion, of difference, of patience. And not to simply accept what we are taught to believe. To scratch beneath the surface and shout about what I find there. She has taught me that you cannot plan for everything in life, that to be a great parent you need to bend like a reed. She has given me the confidence to go out and talk to medical professionals, Parliamentary Members, teachers and parents. She inspires new parents, and is a role model for children with disabilities everywhere.

So when Prof N's test was unveiled to universal acclaim in the media I sat in the kitchen and sobbed. Knowing all these facts and figures, the new simple test made the 'eradication of Down's' seem even more inevitable. I told my husband that it was all over, that we had lost, that in 50 years we will have lost these precious individuals for ever, that other families were being denied what our family has gained. The past years of progress that we have all made together for inclusion and acceptance seemed futile, washed away in a single news story. I felt like a young salmon trying to swim up Niagara Falls.

Daddy Downs Side Up told me to pick myself up and carry on spreading the word. Tp join forces with others in the fast flowing waters.

I think as a community we now need to invite the medical profession more than ever to work with us, to become involved in training, education and developing unbiased support and information for prospective parents. We need to reach out. Many wonderful midwives and doctors are already involving and engaging disability groups and parents in their sessions, such as the DSAs Tell it Right training campaign, that I understand they have offered free to Prof N and his team. Let's aim to spread this further.

Sadly in the meantime I am aware of at least 2 midwives who have taken early retirement because they find the emphasis on screening and perfection too artificial and disheartening.

I also look forward to the full report from the Disability Abortion Law Inquiry and seeing if any changes will be made to the current laws and the level of unbiased support given to all parents, whatever path they choose.




‘To Natty, I love you so much and you’re the best sister in the world and so precious to me. You’re so important to me and if you weren’t in this world my life wouldn’t be the same and that would be terrible. I love you so very, very much and you mean everything to me. Your sister, Mia.’


48 comments:

  1. When I was pregnant, at the age of 35, I said no to all testing, apart from ultrasound. I had no desire to know and I knew that there would be pressure to terminate if we did.

    Difference is to be celebrated, as is life. I hate to think of a world without children like Natty.

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    1. Difference is indeed what makes us unique and each of us has so much to offer. But apparently we are measured in Quality Life Years QALYs by someone, somewhere....

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  2. Thank you Haley, you have hit the nail on the head. As an adult sibling of David with DS he has enriched my life and that of my family. We work on research for DS via the Downs syndrome research foundation UK. I need to add that the figure they quote for annual spend on research is mainly on screening research. The audacity of including that in the total numbers is a disgusting misrepresentation of an already small number (£14 pp/yr).

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    1. I've added that in Liz and will put in links to DSRF UK now. Thank you for your help and support.

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  3. Thank you for giving me the link to this, I saw you discussing it on Twitter and felt it was something I should read. I have refused DS screening in all of my pregnancies as I knew it would make no difference to the outcome of my pregnancy.

    When I went for my 20 week scan (I am now 25 weeks pregnant) they picked up a problem with the baby's brain. I was sent for an MRI scan and they told us our baby had agenisis of the corpus collosum which means the two sides of his brain are not connected and he will have disabilities.

    On the short walk from the MRI to see the consultant I mentioned termination to my husband as I knew the consultant would bring it up and I wanted to know if we both felt the same way before we spoke to the consultant. My husband felt the same way as me, this baby is worth no less than our other boys, he is no less special to us. Yes, we are worried about how we will manage with a child with disabilities, but we know he will be more than his disability, he will have his own personality and loves. Which is why when I read the paragraph describing Natty and the things she loves made me sob, great wracking sobs, because you KNOW those things about your daughter and the people who are pressuring us to have an abortion do not.

    Thank you Hayley, you have given a scared Mum even more hope for the future. Corinne x

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    1. Yes, a diagnosis makes it easy for some to forget the baby or child comes first with all their individual differences. Much love to you Corinne x

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  4. Brilliantly put, I cannot imagine life without my gorgeous girl. Like you, she has made ne a better person and taught me things about myself I didn't know, along with a couple of grey hairs! Things have to change and as a society we need to focus on what matters and not strive for perfection(it doesn't exist!!) thank you for all that you do, you really make a difference xx

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    1. What is this perfection indeed. What next, the autism gene, homosexual gene, red haired babies? Thank you for your kind words.

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  5. When I was asked in my last pregnancy if I wanted to screen for Down's I asked to know more about it. The midwife looked me straight in the eye and said

    "If you found out your baby has Down's would you abort it?"

    I replied "No, of course not!"

    "You don't need the test then" was her reply. I'd never thought of the test like that before - it was an eye opener. I think people need to ask themselves that question at the very start of pregnancy or maybe even before conception. Maybe then they'll feel comfortable in saying no to the unnecessary testing.

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    1. You are so right, and so was your wise midwife. Abortion is a personal choice, but testing is simply to that end.
      TY for sharing x

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    2. My midwife explained the test in the same way and it was very nerve racking, because by saying yes to the test it was automatically assumed I'd abort if positive. Had I had to make that choice I wouldn't done in an information vacuum, with very little information provided on living with DS.

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    3. Yes, it's the lack of balanced info and support that really needs to change isn't it.

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  6. Sometimes too much knowledge is a bad thing, any indication that a child maybe different from the perceived normal causes some degree of fear in the parents to be, it's a shame not all expectant parents get unbiased information.

    I remember at the second ultra scan on my twins being told it was likely they were going to be DS babies, I was sent home with no information at all, was a shockingly numbing experience.

    To eradicate all possibility of DS is a horrific shame, each individual offers so much to the rest of us, we would surely be poorer off without them.

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    1. More support at everystage of the process is what is needed indeed. Traditionally we think Pr-Choice means choosing an abortion, but here the choice to keep babies who are different is slowly being eroded away.
      H x

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  7. Things don't change. When I was expecting my 3rd child, in 1975, I had an enormous row with my mother-in-law, when she told me that a girl in the village had just had a baby with Downs Syndrome. She had followed the hospital advice to "put him away" in care and to try again for a perfect baby. I told my mil that I didn't know whether my baby had Downs, and that if he did, then he would be brought up with my other children, and loved just as much. She told me I was selfish. If I was at the age now when I could have babies, I too would refuse testing. Why would I? I wouldn't terminate anyway, and I can't see many advantages to knowing in advance, beyond being given the chance to research the condition.
    Your little girl looks gorgeous, and sounds an absolute delight...why wouldn't you want a little girl like that?

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    1. Thank you so much for your story. We have moved on in many ways, but replaced such horrors with new atrocities haven't we.
      H x

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  8. Hello Hayley,
    I've been reading your blog for a while but am not sure if I've commented before. I love hearing about all the adventures your family have :) I have no personal connection to DS but your post has really moved me. Is there anything small I could do to help?
    Best wishes,
    Molly

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    1. You are so kind Molly. I think we all need to spread the word, challenge the jubilant stories of this test in the media, question what we are being told and be on the look out for additional info online to help our case.
      TY H x

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  9. Our next battle, my friend, is to be sure that people are continued to be given the option of testing. I forsee testing to be "standard" aka no option, Dr.'s will tell the prospective mother of the baby's diagnosis at 12 weeks or so, without the parent's requesting the test.

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    1. Yes, and then its a short hop to compulsory terminations...

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  10. I enjoyed reading your article so much! My sister had two babies, one year apart, both girls with Down Syndrome. Of course she had refused the amnio tests. It was extremely difficult raising two babies with Downs but my sister was very strong and her husband was supportive, and as a family we managed. There were early intervention therapies for the girls plus help from a wonderful young woman who was subsidised to help my sister with the girls at home. Emma and Nicki are 17 and 16 now and our family and friends can't imagine life without them. They are doing well at school, are happy and cheerful always, and brighten the lives of everyone they know and meet. The gifts they offer in terms of our learning are boundless, and just to know what unconditional love really feels like is amazing .. We lost their Mum, Carolyn, to breast cancer two years ago. I know Carolyn would be extremely upset about materniT21. I remember when the girls were born - so much pressure on Carolyn as to why she hadn't been tested. We were aware of eugenics even back then. It's escalating.

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    1. So pleased you have made contact. I am so very sorry for your loss but how proud your sister must have been of her wonderful girls. Perhaps you would consider a guest post some time?
      Yes, it is escalating and we need to speak up.

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  11. If I had known I was carrying a child with DS I would have terminated. Not a day goes by where I don't have a moment of relief that I didn't ever get that choice. I can't imagine life without our gorgeous 10 year old daughter, with DS. She lives a wonderful, healthy life and is adored by everyone and anyone and enriches all our lives ... all the cliches are true. But how do we get the truth across. I make sure I share my story with everyone I ever come across, especially in the medical profession. My life would be so much less if I had made the terrible mistake of terminating. Very difficult to contemplate living with that decision, at whatever point in the pregnancy process. My heart aches for people who make that decision and have to live with it.

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    1. I fear that I would have done the same, I'm not certain I would have gone through with it, but the fear and ignorance were certainly there in bucketloads.
      How do we get our message across indeed... that is keeping me awake at night.
      H x

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  12. I think it is definitely escalating. When we had our daughter in 2010 and refused screening it didn't seem like a big deal, but last year when I was expecting her little sister I definitely got the 'tumbleweed moment' - not from the sonographer but the entire room of midwives fell silent when I went to tell them that I didn't need the blood test, and their first response was "why?"

    As it happens our faith, our personal views, and two miscarriages meant that we would never have chosen anything but to continue with our pregnancies but the response should be "ok" not "why". The risk is that it gets included in the standard 9 week blood tests and you have to become more savvy to opt out.

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    1. You are so right. Why should we have to explain why. Yes, the tests will become standard.

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  13. Hayley, thank you as always for yet another sensitive, thoughtful and powerful piece. We all know how hard that must have been to write.

    As a mother of a beautiful 6 year old with DS, my initial reaction to the media stories was to feel a little queasy and emotional. But the more I read the more distressed I become. A quick Google search on MaterniT21 throws up some worrying issues. As well as testing for DS they can also give results for Patau's and Edward's Syndrome. There doesn't seem to be much in the media about that. But what concerns me is that it is also being promoted as an early way of detecting the sex of the baby. While I do understand that there are certain medical conditions where this information might be useful, it seems to being promoted more as a "nice to have" piece of information. But you can't help but wonder where it's going.

    Then when you look at the sites for expectant mothers where they are talking/posting about the tests, waiting for results etc etc it is clearly apparent that rather than removing worry these mothers are very stressed and very unsupported by the professionals with very little real information. Even more worrying is a quick look at the US equivalent sites where parents are not only opting for MaterniT21 but also CVS and amnio, "just to be sure", (and that's not just older mothers).

    It leaves me feeling that all the apparent progress we have made over recent decades in terms of equality and inclusion have been wasted, and our children are being abandoned.

    Hayley, we are getting our armbands and floats on, and joining you in this swim.

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    1. Yes, and apparently CVS is still needed to be conclusive anyway.
      Lack of support is leading to additional worry for Mums time after time after time.
      'peace of mind' is a myth.

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  14. I didn't have testing other then ultrasound with any of mine. You are doing an amazing job of ensuring people see children and adults like Natty are wonderful members of society, and as valuable as anyone else. People are scared if they get a result they are not expecting, and if in that time they hear nothing positive I can see why they make the decision to terminate. I think you are quite right in saying there should be a positive leaflet, and encouragement to take time over the decision. Everyone wants their child to be perfect, but they need to be given the chance to see that Downs children are perfect too.

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    1. I agree, and also think choice and termination are very personal, but as it stands, it seems as if choice in the other direction is being taken away, unless people are clear and determined about what they want. I for one wouldn't have been...

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  15. Thank you for writing this - every politician should read it

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    1. Thank you so much. I think a few midwives are circulating it though...

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  16. Fantastic article. Very informative with some excellent points made. I truly wish you well in getting the message out there x

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    1. Thank you, each perception balanced is another starfish picked off the sand... H x

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  17. Hi,Thankyou for your very interesting article. We knew that our grand daughter would have DS.She is now 16 months old and amazing! My heart actually hurts with the love I feel for her. I am sad for grannies who may never get that chance. Keep up your good work.

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    1. What a lovely thing to say. So many are missing out aren't they.

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  18. There must be a way that everyone can work with the DSA to at least provide a positive leaflet that is given to every parent who requests screening and an opportunity to meet up with a family of a child who has Downs Syndrome? I would be happy to be on a list of families who can be contacted if parents want to find out more. I love that you write that your daughter makes you late for things but in a positive way - that is exactly how it is. We are late for everything too!

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    1. This has been a seed of a thought in my mind for a while now. Let's see if we can make it happen...
      Yes, being late is the new being on time ;)

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  19. Thankyou for this great article. I've worked with children and adults with learning disabilities since I was 18. Years later when I was pregnant and I was asked about testing I made it clear I wouldn't mind if I had a child with Down's Syndrome. The (very sensible) Midwife advised I didn't have the test as if the results came back that I was high risk it would be an extra and uneccessary concern through my pregnancy.
    I did have the test for Spina Bifida because of my experiences of working with people with this condition and their views about the condition. A midwife asked me why I had agreed to testing for Spina Bifida, but not Down's Syndrome, I explained my reasoning and she told me she has Spina Bifida. The tumbleweed moment then was from me.
    What I didn't know when I agreed to the test was that it doesn't check for the severity of the condition.

    At my next pregnancy I didn't get checked for either.

    I have learnt so much from the people I work with, and they have added so much to my life. Yes, at times things can be difficult for them, their families and carers, but their lives are still of value.

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    1. Gosh, you have opened my mind too this morning. Thank you for sharing your experiences x

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  20. Stunning piece, I refused all testing except spina bifida forreasons similiar to the comment above.
    Both the post and the comments have really opened my eyes - more education is needed from the health services! xxx

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    1. Thank you Jane. It's all about personal choice of course, but we want more support for all.
      H x

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  21. A really interesting and thoughtful post, thank you.
    I had never really given much thought to the testing process as it is all promoted as the norm. It was only when we were given a 1:2 chance of DS that I realised that if you don't want to know the answer then you shouldn't ask the question.
    We did have a CVS test, straight away as offered by the hospital. In hindsight we weren't given enough time to process the information. Then we had an awful week talking about all the possible effects of either outcome. And although we discussed every avenue we could never decide that we would end the pregnancy because of DS.
    In the end the results came back negative for DS, Patau and Edwards, but this experience has changed the way I think about prenatal testing.
    Maybe I was naive but I think that all midwives should make it clear that you may get answers you don't want, and if that's the case then you can refuse the tests.
    I turned to Twitter for advice actually, and that's how I found Downs Side Up. The one thing I wasn't sure about was if I could cope with a child who has DS - speaking to mums who are it became clear that you just do. They are your children above all else. I'm now firmly of the opinion that I would rather not know in advance. I will not be having the DS screening tests if I become pregnant again.

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    1. That is it in a nutshell isn't it. I actually recall saying we were having the nuchal fold test 'for peace of mind'. How naiive we were.
      I'm so glad you found us on Twitter.
      H x

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  22. Hayley,
    The campaigning you are doing is very important and I hope you find the strength to keep going. My son was developing normally until he suffered a brain haemorrhage at 24 weeks and was born prematurely with cerebral palsy. Disability can happen to anyone at any time; car accidents, strokes, dementia in old age. Vulnerability is part of being human. Being perfect isn't.

    Jane Raca

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  23. Bravo Hayley - I've been meaning to come over and read this post since we met at BritMums Live!

    We are all told to have antenatal tests for "peace of mind" - fine if you get a low risk result. In my case I had a soft-marker for Downs. The stress and uncertainty was very hard to cope with for the remainder of my pregnancy [amnio/cvs were not recommended for medical reasons].

    We knew there were no physical health issues with our baby [heart valves etc were fine] and continued the pregnancy.

    This experience completely changed my mind about antenatal testing. Parents must be given all the information so they can make informed choices.

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  24. Thank you for this. We refused the screening for both our girls. For our elder daughter the sonographer practically fell off her chair... "its just a screening," she said. We told her that we would rather not have it done as it wouldn't make any difference to our decision about having our baby, whatever the outcome would be. She hounded us throughout our 12 week scan, trying to encourage us to have it. We refused. With our second baby, they didn't probe so much, probably because we hadn't had it with the first. It seems like its just given automatically these days. I think most women don't think twice about what they're signing up to because its rolled out as routine, but you are so very right. Keep writing, Hayley. The world needs to hear this stuff.

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  25. I agree, I don't think new mums-to-be are aware of the 'screening' element. I naively went along for my 12 week scan because I just thought that's what everyone does and I was excited to see my baby for the first time. I don't remember being told that the sonographer was undertaking nuchal fold measurements or indeed what that was for....until I heard one sonographer say to the other “Are you going to tell her, or am I?” ....We had a 1 in 2 chance that our baby had DS. But the biggest surprise and shock to me was not the diagnosis itself but that there was only 1 assumption made by the doctors we met…that we would not want to continue with the pregnancy! I was horrified that they offered me a termination there and then, without any further testing to be certain of the cause of the large nuchal fold reading (which can be many things).
    And even when I went for CVS the next day, the doctor performing the procedure said “We can all live with ourselves better if we find out for certain”….except that I was having the CVS because I needed to know exactly what we were dealing with to get prepared…..NOT because I needed to justify termination due to an ‘adverse outcome’ (his words). I remember coming away from the hospital feeling really disappointed and sad – I thought hospitals were places to support people with medical issues, not be dealing in damn statistics and eugenics…and that little life inside of me seemed to have so little importance in their eyes….which just made me all the more protective of her!

    And why was I rapidly hauled into (made an emergency appointment with) my local GP once they realised I had declined any testing when I became pregnant with my 2nd child? He wanted to talk to me about why I didn’t want testing and did I understand the ‘risks?’…. for more info: www.3star21.co.uk

    Keep up the good work Hayley!

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I love hearing your thoughts.