To think MN is taking a strange stance on the NIPT test?

[eeyoresgrumpierfriend]

Is it just me or is MN giving a lot of coverage to those opposing the new non invasive prenatal screening tests the NHS wants to introduce. Today's blog of the day, Sally Phillips at Blogfest and there was a guest post against screening a while ago too.

Full respect to these women and the choices they've made but isn't the crux of the argument about women's choice?

The NHS already screens for Down's, Edwards and Pateau's but the new test will be safer and can be done earlier. It's only going to be offered to women who would otherwise be advised to have amnios/CVS.

So it's a less invasive, faster, less scary, safer way of women getting the information they want to make an informed decision right for them.

Odd that MN's seem to be giving a platform to the anti-argument with no counter-balance?

I don't think I understand some of the posts on this thread. No one is saying that screening is a bad thing and it's acknowledged that screening is already available.

But people who aren't sure about the NIPT are concerned because screening will now be easier, safer and earlier. Why is that bad?

I haven't heard anything about the gender issues associated with this test. When I paid for it privately at 9 weeks I had the results back by 11 weeks, including what sex my baby was. Is there a possibility that this will eventually lead to terminations because of gender?

If what people are actually concerned about is the level of support and counselling offered to women receiving a downs diagnosis, then campaign about that. It sounds like a worthwhile thing to campaign about. But don't distract from that campaign by complaining about the introduction of a test which will simply make getting the information most women want safer and allow those women who wish to terminate to do so earlier.

I'm actually genuinely saddened by some of the language used on here. I want to preface this with the fact that I believe any woman should be able to abort or keep any child, and I do not place ANY judgement on women who choose to abort. A woman knows if she is able to continue on with a pregnancy and this should never be questioned. I also want to say that I am a nurse, and I work primarily with people with learning disabilities, and have worked with people with a variety of severities of learning disabilities.

The amount of purely ableist language and thoughts on this thread is incredible. The idea that yes, maybe your child with Down's Syndrome will be high functioning, but they also might not be, so you should abort it, is frankly, disgusting.

People with profound and multiple disabilities are people too, and to hear that people think babies should be aborted purely on this factor is disheartening.

Quality of life is subjective, and to suggest that you can determine someone else's quality of life is wrong. Again, is like to reiterate that if a family wishes to abort they should be able to without question, and my comments do not refer to individual choices but society as a whole.

Also, to hear other nurses praise doctors for "helping a woman give herself permission" to have an abortion is horrible. That's just another thinly veiled "convince her to abort"

Piratepete the NHS isn't going to disclose sex when it does the test

Sugar lightly yes of course people with profound disabilities are people too and I don't think the issue is as simple as high functioning ok / severe disabilities not ok. I understand you are not singling anyone out but the point I want to make is that in very severe cases the health problems associated with DS and in the case of my son Noonan's are as life limiting/ terminal as if the diagnosis had been Edward's or Patau's. He had some good quality of life and was definitely a person but also numerous operations / illnesses /horrible procedures/ couldn't breathe independently and died after just a few months. We recently found out he had a rare form of Noonan's that has an almost 100 per cent mortality rate. We loved him enormously but If I had known what he would go through I would not have carried on with the pregnancy. Nothing to do with being ableist just about avoiding suffering.

Very genuinely Sugar, why do you feel it is disgusting?

There is a fantastic actor in Coronation Street at the moment with Down's syndrome. He is depicted as a young man who is naive, but nonetheless a fully functioning adult, buying a flat (in the unrealistic way all Corrie actors do ) working and having functioning friendships and relationships.

We acknowledge those people exist but in an attempt to counteract the 'negatives' of Down's the media focuses almost on these examples and there are numerous prices on television, in magazines, in local newspapers, of success stories of people with Down's.

That's all lovely and I don't seek to take that away. However, it also needs to be acknowledged that as with all conditions there is a sliding scale and solely showing those on the 'more able' of it isn't accurate.

If you do believe a woman has a right to abortion then she has that right even when you find her reasons abhorrent. I noticed a similar amount of thinly veiled criticism around the time a celebrity who's name I can't for the life of me remember claimed to want to terminate at 18 weeks to gain access to the Big Brother house. I think it's a stupid reason, but she still has every right to make it.

If someone doesn't wish to have a disabled child, then refusing to let them have this test is in effect saying 'you will have this child and be grateful for it. We know better than you. We know you'll love it when you have it.' Great, but not really the point is it?

We do not have the right to make another persons decision for them or call them/their decision disgusting. Withholding information to force someone into a corner is what I feel is disgusting.

Sugar lightly forgot to say, huge respect for the work you do. X

So sorry about that Panda

My son has 22q.11 deletion which is testable for with this test privately (I believe you pay extra for the additional testing so not sure about the NHS).

When I was pregnant with DS3 we had the nuchal testing after only finding out that DS2 had the deletion when he was 4 years old. During the scan, which was carried out by the fetal med consultant, I could see the paperwork they were all referring to about my son. It was a printout from wikipeadia on 22q deletion. I as a parent of a child (with a not uncommon actually) with a testable for condition knew so much more than they did & they would be counselling other women with that diagnosis. The tone was very much there that surely we would terminate should DS3 have the deletion.

I am very much pro choice and ironically an earlier diagnosis for my son would have made a huge difference to him medically & developmentally so I can see the benefit of the early testing.

I explained why I think it's disgusting in the post. I also don't oppose introducing the new screening but I have empathy with those who do.

Thanks Jessica and 💐 to slightly crumbled and other parents /relatives on this thread who have sim experiences. I am just really concerned that the coverage of this programme and the test is from the point of view of a actor who while clearly a loving parent does not appear to have experienced the absolute hell of having a child who is desperately ill despite having a broad spectrum disorder, and apparently wants to prevent a more accurate and safer test being available.

I think the key issue is that however fulfilling the lives of people with profound disabilities are for them, we're talking about foetuses not people. People who were conceived as a result of rape have fulfilling lives, it doesn't mean we get to judge women who don't proceed with those pregnancies. A woman has every right to consider what she wants out of her own life and then choose, or not, to terminate. Because we are a civilised country which acknowledges that the pregnant woman is the person involved and she is making a decision about a foetus.

'The idea that yes, maybe your child with Down's syndrome will be high functioning but they also might not be so you should abort is disgusting.'

Why? It seems a valid enough reason to abort to me - that your child will have some disabity and no one can say for sure how severe that disability might be?

I don't see that as disgusting at all.

Because why is someone's life worth less if they have a more profound disability?

Those who agree with current testing (triple testing leading to CVS/amnio) but disagree with the NIPT seem to be saying that's it's ok to test but it shouldn't be too easy and virtually risk free because people need to seriously think about what they're doing.

Which I find patronising.

The majority of disability is acquired not congenital. So the answer to the question 'what happens to a person with Downs if their family can't manage' is the same as the answer to that question when asked about any of us.

My next door neighbour has Down's syndrome. He lives in a house with two other young people, both autistic. They've got a lot of family and professional career support but they are there overnight by themselves and in over a year they've never needed any help from us. Its an impressive level of independence. There are a LOT of positive examples. If we could be sure this picture is given to women contemplating termination as well as the concerns about the condition then I think we would all feel a genuine choice was available.

people with downs syndrome are adorable

Sugar - it's not a question of a disabled person's life being worth less - having a possibly profoundly disabled child can be a lifelong commitment for the parents and family of the disabled person, effecting whether the parent will ever be able to work again, may mean that the parents are carers in their old age - huge ramifications on the family.

It isn't about what a life is worth Sugar: if we took that stance then essentially we are anti termination, which you have stated you are not.

It's about the impact the resulting child will have on finances, other family members, relationships, existing way of life and so on and so forth. That can happen with pregnancies where no disability is detected too: it isn't a 'if there is a severe disability then their life is worth nothing and should be terminated' it's 'if there is a severe disability there may be strong adverse effects for everybody.'

Nolonger I agree. Very well put.

Northern you always find ways and means to cope but given the choice, many people choose not to. Unless people wish to withdraw that choice altogether then i honestly fail to understand the issues here.

What I'm learning from this thread is how archaic many people's attitudes to DS are, how prejudiced against it they feel it's acceptable to be and how little is known about the perfectly functional happy lives that can be enjoyed with it.

It's sad that an increased abortion rate for DS will only fuel this ignorance, which will lead to an even higher rate.

I do sympathise with women aborting for DS and would never criticise it happening on an individual basis but as a theoretical concept I feel it's hugely worrying to abort people because they are different to us. Ethically it's a different kettle of fish to illness or disability causing pain/limiting life but we treat it as if it's exactly the same.

There is a serious eugenics argument here that shouldn't be silenced by the ' right to choose ' argument any more than the ethics of aborting on gender grounds should be dismissed as fine because a woman's choice is sacrosanct. It's really not about that.

Because why is someone's life worth less if they have a more profound disability?

It's not (in my opinion) about their life being worth less, it's about the detrimental quality of life that may then ensue for the already existing family members. I have a friend with a profoundly disabled child and whilst I can see the little girl has brought her a lot of joy, she has essentially stopped her own life, her own career, her own plans and is now a carer and will be forever, because provision for adults with profound disabilities are getting fewer and harder to reach, and she spends her entire time going to appointments/fighting for provision/coping with very stressful hospital visits as they have ongoing problems.

I wouldn't want that life, I did not have a third child as I didn't want to roll the dice again as an older and higher risk mum (knowing I would probably not have an abortion). That's a choice, and I don't see why it's disgusting at all, as it's an admission that both my resources and society's resources are limited and I don't want to gamble on that support not being there, quite frankly, or to take my emotional resources away from my existing children. The potential future child is not yet born and so you still have time to make those decisions, if you want.

Just for the record, Sally Phillips has said repeatedly in interviews that she is pro-choice.

people with downs syndrome are adorable

Just like cuddly-wuddly bunny wabbits. All of 'em. Fuxxake.

I would do all prenatal testing offered and would probably abort if they had DS. It's not about them 'being different' it's about the challenges they could face. Learning disability services are woefully underfunded and as a nurse I am sure I could care for them and provide a good life but what happens when I am 80? Alzheimer's and Down's syndrome is under researched and there are few specialist services and people with the skills to care for people with learning disabilities and dementia.

I have worked with many older people who have refused operations and been terrified what is going to happen to their children when they cannot care for them because they have a long mistrust of services. This makes me weary of knowingly bringing someone into this world who will have to go through this.

What I'm learning from this thread is how archaic many people's attitudes to DS are, how prejudiced against it they feel it's acceptable to be and how little is known about the perfectly functional happy lives that can be enjoyed with it

I think my attitude the opposite, it's borne of experience. I know people with children with Downs Syndrome who are severely affected, and adults who are non-verbal and difficult to care for. I also have worked with children and adults with Downs syndrome who were much more independent, I understand the 'spectrum'. I wouldn't have said that the people themselves who were on the more severe end were less happy and many do indeed enjoy their lives, but the burden of care much greater and nearly always on the mum as well. It is having seen that, rather than the cute childhood images, that plays on my mind, just as caring for anyone in older age plays on my mind too (e.g. dementia).