Guest post: "I fear the eradication of Down's syndrome"
New pre-natal tests risk sending out the message that some lives are worth less than others, argues Blogfest '15 speaker Hayley Goleniowska.
Hayley Goleniowska will be speaking on our People Power panel at Blogfest. Book two or more tickets using the code BloggerFriends and we'll give you 25% off the price.
Downs Side Up
Posted on: Mon 16-Nov-15 17:29:26
(999 comments )
On the day Natty was born, I wasn't sure I was up to being her mother. Ignorance took over. Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.
In eight years, we have come so far as a family, risen to challenges, endured heart surgery, made adjustments and learnt to slow our pace and live in the moment. I wouldn't change any of it. I am a better person now. The pregnant woman I was, whose heart was filled with fear at the words Down's syndrome, now shakes her head in disbelief.
I've been bleary-eyed over research for this post. And, in fact, as I rose at 5.30am, drafts of what I would write very much in my mind, there was one member of our busy household who noticed my pensiveness. Natty drew me down to her face level, looked intuitively at me and said 'It's OK Mummy.'
I held her so tight, and made a silent promise into her warm hair, a promise that I would do my best to convey her worth to the world.
Because while we praise advances in healthcare and women's control over their reproductive lives, there is an important ethical debate I fear is being overlooked.
A new non-invasive prenatal test (NIPT) could help identify women whose babies have Down's syndrome. The test involves taking a sample of blood from the mother and it uses this to detect the baby's DNA.
At the moment, the NIPT test is available privately, but it could soon be rolled out by the NHS as part of their population screening programme. The UK National Screening Committee has just ended consultation over offering it - it can only be added to the programme if there is a beneficial reason for doing so.
I cannot bear to think that one day I will have to explain to Natty why others think her adored life is not worth living, or even justify her very existence. But here I am, already doing just that.
However, there is no health gain in diagnosing Down's syndrome during pregnancy. It cannot be treated or prevented. It simply allows parents to decide whether to continue a pregnancy to term or not.
There are ethical implications to genetic testing, but no easy answers. The UNESCO International Bioethics Committee says that genetic testing can offer women the right of choice. However, it could also become routine that ill or disabled children are not to given the choice of birth at all.
So giving women choice whilst not devaluing individuals with Down's syndrome is a fine line to tread.
We must ensure that parents are given unbiased, updated information in order to make informed choices. There can be no assumption that those with Down's syndrome are not compatible with life - or worse, that they are too costly to have a right to life.
We are promised that the new NIPT can allow parents to be prepared for their baby's arrival and that it will not increase termination rates. However, in countries where Down's syndrome screening has been standard for years, termination rates stand at almost 100%. Are these tests being sold as a kind form of early euthanasia to trusting expectant parents - and will a whole genetic group of people be targeted in the process?
The support networks we have in place simply aren't as sophisticated as the genetic tests being considered. We must explain test implications and outcomes, support those who choose a termination and give equal care to those who choose to continue their pregnancies. We need charities that aren't partnered with the test manufacturers.
If parents are rushed into terminations, or asked repeatedly if they would like to end their pregnancies, then we are certainly sending out the message that some lives are worth a great deal less than others.
We need the screening committee to welcome input from parental groups and self-advocates. We need to match up the wonderful examples of best practice by bringing committed midwives and learning disability nurses together, and we need to accept the value of difference.
Society has come a long way from the days when children with Down's syndrome were institutionalised with little or no love, educational support or quality healthcare. We hope Natty will find employment she enjoys, have a partner of her choosing, a social life fuller than ours and live a long, healthy life independently with support.
I cannot bear to think that one day I will have to explain to Natty why others think her adored life is not worth living, or even justify her very existence. But here I am, already doing just that.
And, most of all, I fear that one day I will be grieving, as others celebrate the eradication of all children like my beautiful daughter. No Natty, maybe it's not OK.
The BBC is making a documentary about Down's syndrome, which Hayley Gowleniowska is contributing to. If you are affected by the tests and interested in an initial off-the-record research chat, please contact Clare at firstname.lastname@example.org.
By Hayley Goleniowska
Thank you for sharing your story and photos of your beautiful children.
I share your concerns about an effective genocide on DS and other genetic conditions, and what that says about society's understanding and tolerance of disability.
On the other hand, the child I know well who has DS was diagnosed a day after birth. An earlier diagnosis would not have driven his parents to abort, but would have given them longer to save up - they couldn't both go back to work long term because of all his medical appointments, and the mother is still shuffling appointments and special arrangements now that he is 9. She also wishes she'd known in advance how difficult it would be to bf a baby with such poor muscle tone, so she could have prepared to ff instead.
A DS dx early on could help with earlier screening for the comorbid heart conditions.
Some thoughts explaining why I'm not immediately against this screening.
the problem with the argument that testing gives parents the opportunity to prepare for life with a baby with ds is that the reality doesn't bear that out. In the UK, 94% of pregnancies where downs is detected are terminated, which unfortunately adds weight to the statement that testing is there for the purposes of eradication and nothing more.
personally I think there is far too much emphasis on the need for testing, and for that testing to be aimed at certain conditions only when actually there are multiple others which cannot be tested for.
Personally I believe that education needs to start with the medical profession, and that disability needs to not be seen as a life-long burden which parents will be signing up to if they don't terminate the pregnancy and try for a "healthy" baby instead.
While the continuation of a pregnancy is ultimately every parent's choice, the testing process needs to focus on preparation for life with a disabled child rather than the assumed choice to terminate it. IMO.
Currently there is far too much emphasis on termination and even an expectation that if you have a high risk then you will be going down the route of termination. I know at least two people who had odds of 1/100 after a tripple test and were offered the choice of termination before even going down the route of amnio/testing. That assumption/expectation needs to stop.
My 12 yo DS has a condition (Prune Belly Syndrome) that can't be tested for. It upsets me greatly to think that many people would have chosen not to have him if they could test for it - it makes me feel that he is thought as having less value due to his medical issues. The fact that he has a "condition" should not define who he is or how he is seen or valued, in the same way that being shorter than average, or short-sighted, or asthmatic should define someone. It's just a part of the whole of him. Everyone is different, everyone has value.
I have always seen nipty tests as a way of preparing and finding out what additional help you child might need.
Also nipty tests also test for other trisomies. As someone who has had a tfmr after an amnio diagnosis of trisomy 18 I will be having a nipty in any subsequent pregnancies.
I think decisions around termination need to be made by each family and for their own reasons. There have been a few lovely mners that I've got to 'know' recently who have continued a pregnancy with a T18 diagnosis.
For me, personally, I would continue a pregnancy with a T21 diagnosis but I would need time to get my head around the diagnosis, research possible problems we might come across and build a support network.
I honestly think nipty tests are a positive move. I really don't think it will effect the number of terminations for Down's syndrome much tbh.
For me, the other important trisomies they test for are essential, they can help you make a decision early on and if you decide to continue give you time to fight (as a few mners have) for continues, active care for your baby if they are born alive.
If you are pro choice though then you are pro choice. It doesn't have to be your choice but nor does it negate other people's choices. There will always be those who choose not to have the test. The 6% who choose not to abort are not suddenly going to decide to do so. I think the idea that you will have no choice is incorrect.
There are lots of conditions that cause learning difficulties. An accident or illness can make your perfect child become learning disabled over night. What is frightening for parents is managing the care needs of a child with learning difficulties when they are old or worst still dead. The issue of cuts to disablity services needs to be address before women are disaded from termination.
I also worry about the slipperly slope that enuathansia is taking in Belgium. There are many disabled people who other people might deem that their lives are not worth living. (Or feel like a burden.)
I think that people have a lot of fear about Downs. Very few people actually know a child with Downs. There is a lot of pressure to have the tests. I refused to be tested for Downs when I was pregnant with dd and I got a lot of stick from the midwife.
I now live in Ireland where abortion is illegal and testing for downs relatively rare (although many women travel to the UK for terminations)
What struck me upon leaving London was the fact that there are far more children with Downs in Ireland than the UK, where its becoming quite rare.
Personally I wouldn't have the test and I wouldn't terminate, however I also wouldn't judge someone who did.
Chances are if you had a child with Downs, you would rise to it and love that child with all your heart. However, you might not necessarily know this when you do the test and the idea of a child with special needs might seem too much. Life is hard and I guess the decision to terminate is born out of this.
MrsH It's hugely emotive to call it a genocide on DS and other genetic conditions. Genocide can only be carried out on live, born human beings. It isn't considered murder to have a termination so you should not be bandying about terms like genocide. People decide to abort every day for many many different reasons - Downs Syndrome is just one of many. Millions of perfectly healthy foetuses get aborted every year too, so I think it's completely wrong to couch it in those terms.
Hayley as I am sure you don't need me to tell you DS often, indeed usually comes with other life limiting co-morbid conditions, so as well as DS some parents may wish to spare that child a lifetime of ill health.
Many parents who are older will be considering whether it's fair to have a child who will always need their support on a daily basis when they are unlikely to be around to offer that support from when the child is maybe only in their 20's or thirties. It must be hugely, disproportionately distressing for an adult with learning difficulties to deal with bereavement, especially the loss of a parent.
But there will always be people who choose not to take the test on ethical or religious grounds, and there will always be people who are told their baby has DS and decide to go ahead anyway. Many of them will be older first time parents and it may be the last and only chance to love a child of their own. I am quite sure that they will always be supported in their right to do that, and that every child born with DS will be supported to live as full a life as possible.
Amniocentesis is invasive and risky in itself and any subsequent abortion is carried out quite late, so doubly traumatic both physically and emotionally I would imagine. I for one am delighted that if a painful and difficult decision must be made, it can be made as early as possible and with the least amount of physical trauma, and the new NIPT offers that, when compared to an amnio.
If people are having babies with DS now, it's probably either because their young age didn't automatically qualify them for an amnio and by the time they found out it was too late. Chances are many of those younger women would have chosen to abort if they had known in time.
Possibly some older women or those identified as high risk were offered an amnio and didn't take it due to the risks of miscarrying a potentially healthy foetus, and preferred to take their chances. But had a test been available with no risk to the foetus it would probably have been a different story.
Other women may choose not to abort because at upwards of 20 weeks they just couldn't face it, whereas at compared to 11-14 weeks with the NIPT it might have seen as easier to cope with.
Your daughter is here now, you love her just as she is and wouldn't change her, but looking back to when you were first given the news I'm if you could have wished her not to have DS you would have. Of course people with DS and other similar conditions should always have a right to life if it's what their parents choose for them, no-one should be forced to abort a child with a disability of any sort. But to mourn the potential 'phasing out' of a quite profound and often life-limiting disability seems a most bizarre and thing to do, if you don't mind my saying.
It's a very complex and sensitive subject. I'm glad you are happy with your choice and that your daughter brings you great joy, but I don't think it's really appropriate to be judging other people for the choices they make when faced with similar devastating news, which is effectively what you are doing here.
We didn't have any tests (beyond the anomaly scans) for any of ours; our logic was that we would not have terminated for Down's ad indications of more severe trisomies would likely show up on said scans. We didn't think at any stage that we should test so we could 'prepare'. So although we are a sample of one family, I guess that at least anecdotally bears out the perception of antenatal testing as being about continuing the pg or not.
There was a slight question mark about DS with dd when she was born due to a couple of physical features noticed by a MW (a paed later told us she very much doubted it and we haven't had a test done) and I remember really resenting the implication on the part of that MW that the DS alone would be an awful thing. I worried about physical conditions (we have no indication whatsoever of heart or bowel defects etc) but the mere presence of this particular extra chromosome seemed to me as if it would be eminently livable with. The focus on DS antenatally and all the talk of 'risk' rather puzzles and saddens me.
Speaking as someone with a disability (which is relatively minor and non-testable), I was worried that I may pass it on. Had a test been available, I would have used and terminated if it had been positive.
i don't value my life less, but want the best for my children. I am limited in the number of children i can have, so is it wrong to not want the ones I do have to struggle.
We didn't have any tests (beyond the anomaly scans) for any of ours; our logic was that we would not have terminated for Down's ad indications of more severe trisomies would likely show up on said scans. We didn't think at any stage that we should test so we could 'prepare'
I totally get that you love your child and can't imagine your life without them. And it should go without saying that your child, who exists in the world, is as valuable as any other child. The fact that it does need saying reflects society's poor attitude and provision for people with disability. I think this is often a factor in the decision to terminate.
But, if you oppose this test then you are basically opposing a woman's right to autonomy over her own body and putting her in a position where she might feel forced into having a baby that she might not otherwise have chosen. Not everyone is comfortable with the idea of a late termination, which is the situation women are faced with given that amnio takes place at 16 weeks. Having a child with ds changes life totally and parents have a right to decide for themselves if this is something they want to accept or not.
My son does not have DS but he does have a gene mutation on chromosome 21 called DYRK1A.
Shopping trolley asked if you had wanted your child not to have DS.
I can honestly say ... No ... I love my son just the way he is. I would never change anything about him! If I changed his condition , He wouldn't be him!!!!!
Why would I want to change him? I have made so very good friends and lost friends I considered as good friends!
My son is amazing .... Just the way he is!!!
i don't value my life less, but want the best for my children. I am limited in the number of children i can have, so is it wrong to not want the ones I do have to struggle
You just can't predict that though. You can never guarantee a "perfect" child, no matter how much testing you do. They may not have DS, but they may have other, even more severe issues that can only be diagnosed post natally. What do you do then?
I have always refused ds testing in all my pregnancys, I felt that I wouldn't want to be faced with that the decisions that may follow.
Just to add, as a pp has guessed at. Many issues are picked up at 20 week scan. A termination at that gestation is horrific and incredibly traumatic. I did it because I knew it was the right choice for my dd2 but if I'd been able to know before hand and have an earlier tfmr my experience (which in itself it horrendous) would have been a tiny bit easier.
And I'll say it again NIPT tests are NOT just for Down's syndrome.
newname I would love my child unconditionally. Of course you cannot guarantee a perfect child.
However, you use contraception when you do not feel you want children because you would struggle to bring them up properly - if you get accidentally pregnant at that point, you decide to keep or terminate based on what is best at that point, you would still love the child even if unplanned.
If you make life choices like these, how is testing any different?
Very interesting debate and touching insight into life with downs syndrome as a part of it.
I do not think that having a pregnancy to prepare is helpful at all. The horror of coming to terms with something you have no clue of the reality of, at a time when stress is bad, is just pointless.
I had small measurements and echogenic bowl picked up at 20 weeks. I was also 36. I would rather not know.
I think you are either pro choice or your aren't. I support a woman's choice whether they terminate for disability (and the impact on them and their family) or because they terminate a 'normal' pregnancy for whatever reason that may be.
I will always be pro choice, whether I would go along with that decision in my own circumstances or not. Luckily I have never had to make that choice.
I welcome early testing. Baby behaving wrote a fantastic post which I wholly agree with.
I asked for downs screening with both pregnancies and I would have terminated if the odds were high post amino. There's nothing disability about it.
And badly is right the term genocide is so bloody absurd it makes me angry. Only a mother can decide to terminate and only her own foetus.
Poster who says they wouldn't terminate so there's no point testing are spot on too - really there's no point.
"But to mourn the potential 'phasing out' of a quite profound and often life-limiting disability seems a most bizarre and thing to do"
I have a child with ASD and other SN. I know the chances of a further child with ASD increase dramatically. This will heavily influence whether I ever have further children.
Am I not also committing a form of proactive genetic engineering?
Does this devalue my wonderful son or any of the fantastic ASD children I know.
I do recognise if I could take away many of these children's difficulties I would. Therefore I would not mourn if ASD or any of his other difficulties could be genetically engineered out.
Finally it is disingenuous not to recognise the emotional blackmail inherent in linking an inviduals very difficult decision to the value of a section of the population as a whole
I truly hope that anyone who is in the position making the tough decision after a test does so in non judgemental freedom and as early pregnancy as possible
I think that there are major implications for a family having a child with special needs if they have other children. Its understandable that some people don't want a disabled child.
I find the idea of late terminations horrific. However lots of terminations are done around 12 weeks for social reasons. In early pregnancy the fetus is not much more than a ball of cells. It does not think, it has not yet developed into a human. Infact there are a lot of miscarriages before 12 weeks. I feel that if a pregnancy is going to be terminated the sooner it is done the better. Why is termination for disablity at say 12 weeks worse than termination because of relationship break up? Is it right to force a woman to carry an early pregnancy to term?
Emotive expressions like "culling" are not helpful to people who may well be going through the trauma of considering termination.
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