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 agree that the problem is that SP and her sone are not representative of every mother/child with DS and so I'm not really sure how she seems to have become the spokeperson for everything associated with thi.

He son is a child who is clearly relatively high-functioning (I don't like that term really but don't know a better one), she is clearly more financially secure than the average person and she didn't know he had DS before he was born. So who is she to tell other people who are in a completely different situation how they should or shouldn't act? She's not an expert. She is one person with one set of circumstances and as we have seen on this thread - there are lots of other different circumstances out there to do with ante-natal screening, DS and family situation.

The test exists. It's safer and cheaper than the alternatives. I cannot fathom how anybody would seek to deny this test to pregnant women. Its not as if previously women couldn't find out about trisomies anyway, they already can. But this is a better way in most cases and I absolutely think it should be available.

What a woman chooses to do following the results is nobody elses business.

Bad typing there...

Women aren't so stupid that they would ditch breastfeeding because they saw a nice advert

Of course people are influenced by advertising, why would companies spend so much on it, if they weren't? Why has cigarrette advertising been banned?

And of course formula is inferior. It's much better than a baby starving to death and its even much better than a baby being reluctantly breastfed, but it is just an expensive imitation of breastmilk.

Decent opinion piece from the Guardian which addresses how this issue has been hijacked by the anti-choicers, and touches upon the economic consequences of raising a disabled child.

www.theguardian.com/commentisfree/2016/oct/05/downs-syndrome-baby-disabled-child-aborting-foetus-abnormalities

It also references the scene with SP interviewing a woman who terminated a Downs pregnancy, and essentially says "But SP wasn't trying to guilt trip the woman because she says she's pro choice". Hmm. I'm interested to see how that plays out on screen because her actions don't match up with her words.

Well Ice, I think formula feeding IS normal and acceptable and if some women choose formula to relieve themselves of the burden that is being the sole person capable of feeding their infant, then that's fine. Yes, for some women BF is never a burden, but for some it takes a massive toll. I just can't get on board with any lactivist argument because I believe people should be free to choose formula for whatever reason. Full stop. I'm am an infant feeding pro-choicer And that's my last word on the subject, because it's way off topic.

Eeyore
Interestingly the BMJ study puts the increased rate of people deciding to proceed with DS pregnancies down to the fact that introducing the new screening test meant retraining the staff who were delivering it and producing new leaflets and information for patients.

I don't think it does, if it's this one:
Notably, approximately one third of women with a confirmed positive NIPT result chose to continue their pregnancy, suggesting that the high uptake of NIPT includes women who would like additional information for preparedness and not necessarily for decision making about termination of pregnancy. Although the numbers are small, this finding indicates that the birth rate of infants with Down’s syndrome may not change significantly if NIPT is introduced more widely

Slightly more boring conclusion if I've read it right, but still good news for both sides of the debate, if there are women who are making use of the safer test but apparently it's not changing their prior decisions about DS.
(I'm not sure there's enough numbers in that paper to say whether it's likely that all women in the population who would have turned down invasive but take up NIPT and get a positive result continued with their pregnancy, or if it's just some of them, but I might try and have a proper read of the paper once the kids are in bed)

I think SP's campaign is very dangerous. The guilt on choosing to end a pregnancy for any reason can be very heavy. She could be potentially causing a great deal of harm to those who have in the past ended pregnancies and to those in the future also.

My first baby had a 1-5 risk of downs, it was accompanied by hydrops and we were told that in the unlikely scenario that I would carry to term the baby would die - the fluid was preventing the organs developing. Essentially it was tfmr or "wait to miscarry/stillbirth". It was the most horrendous experience of my life. I didn't have a cvs or amino and chose to tfmr and have a post morgen - as it turned out she didn't have downs but would have died.

My next pregnancy two months later my screening came back 1-14 but no hydrops. I had just been through the ordeal of losing a desperately wanted baby and now it was looking likely to happen again, I chose to have an amino. For 17 weeks I hid my pregnancy, in the (incorrect) knowledge that this baby would die, whilst carrying on with a very all consuming job. This nearly broke me. Thankfully the amino came back clear and my beautiful healthy baby girl is now sleeping in the pram!

Regardless of the debate on screening/eugenics/ds, had this test been available for me - and it would have been as the initial test came back high risk - i could have found out sooner that everything was OK without the additional anguish of the risk of an amino. It could have meant that I didn't have crippling antenatal depression that developed into post natal depression.

This test doesn't tell you anything that the tests available to us now do, but they tell us safely, earlier and without any chance of a false positive. To deny a woman that right, and make her suffer as I did is inhumane.

noodle
Thank you for sharing.

There is another tweet on phillips' feed 'refusal to admit test is to facilitate termination'. Pro-choice, eh?

Will SP personally gift all women who knowingly continue with a pregnancy with a fetus with DS with a nanny just for that child? Like she has?

This is a step backwards for woman's reproductive rights. It doesn't matter if someone is pregnant with a normal fetus, a fetus with a chromosomal abnormality, a purple green monster or a fish. If she wishes to terminate she should be able to - and is in fact legally able to - without the additional guilt that she is reducing society's diversity, eliminating DS (actually not true) and people muttering about slippery slopes and eugenics. Women considering a termination are not accountable to various disability awareness groups.

I can't believe the interview with the poor woman who chose to terminate. Horrific.

Well there are no surprises in this doc.

I'm glad some of the contributors pulled Sally up on her use of loaded, biased language. You could tell she was pissed off with them though.

Also wanted to say I've found this thread really fascinating and it's made me question my own beliefs (which I already considered to be staunchly pro-choice) particularly in terms of what should and should not be reasonable grounds for a termination. Sex selective termination in particular. I've found it really interesting to consider whether abortion truly should be allowed for any reason of the woman's choosing. So, thanks for that.

Thanks bookworm for saying a lot of how I feel on this. 🌷

jinkx It was only meant to highlight, that where there is significant societal bias, peoples choices might seem free but actually they are hugely in often unhelpfully biased. As someone else mentioned, perhaps smoking would have been a better example.

As you say, in a culture like the UK where there isn't sufficient gender bias to cause specific issues with gender selection, you don't have to ban gender testing. In a society where you do have huge financial implications with female children, you can't give gender tests and allow people to 'come to their own decision' - well not unless you want villages full of men with no hope of finding a female partner (looking at you china).

So the question is, does the UK have a sensible proportionate and grown up societal impression of disability? Are we adult and informed and unbiased enough to have a free choice on this issue?

I don't believe we are.

Ice I take your point on the societal impact of sex selection but I don't think that means that we should restrict TFMR, for two reasons. First of all, it's different in that the reason girl children are more "problematic" is because of societal attitudes in those countries, while DS will remain a disadvantage (chances of a heart condition, difficulty in finding someone trustworthy to look after your affairs and care for you when your parents are dead) no matter how positively it is viewed by society. And then, using the sex selection analogy again - isnt the better solution to create a society in which these people are more valued, and allow women to make their choice within that better society? The whole of societal benefits when a child is born and raised but the costs of children are almost entirely private. I don't think we can morally ask women to take on that burden if they don't want to and we help so little, as a society.

toomuch sorry you are right. I've conflated things I've read in different reports and stated the point too absolutely as well - of course no one can now why the rate was different for certain.

I think it was on the website for the original NHS Rapid project (which was the trial) where it noted that the additional training and information given to staff participating in the project could have been a factor. I'll try to find a link.

Either way - safer test, fewer miscarriages, lower cost, earlier diagnosis and a rise in the number of people choosing to continue with DS pregnancies.

There is nothing to object to in the screening unless you don't want women to know, because you don't want them to have a choice.

Bravo Hadley Freeman.

I submitted a complaint to the BBC last nignt - the first time I've ever done that. I said I didn't need them to reply to me, but now I wish I had. I'd be interested to know whether it receives a lot of complaints.

toomuch in the current situation I am in favour of the new test - I just think that the argument for women being informed and making good solid conscious unbiased decisions was being massively over sold and probably not realistic.

Obviously the solution is to improve education and society.

I spoke to my DH last night about this and he trotted out all the negative false stereotypes to defend his position that obviously we would absolutely have terminated for DS. It really woke me up to the fact that people making this decision are WOEFULLY uninformed, and biased by the negative portrayal of disability in society. So yes I agree the answer is education and a more just society, not removing choice from women.

I don't think any amount of education would have changed DH's mind though. He also told me he would have terminated for red hair if that information was available. (I have red hair!)

Even after me describing to him the physical toll of pregnancy, and the early miscarriage I had, on my body I couldn't get him to see that persistently terminating babies until you got a really good genetic combination wasn't really a goer.

I hardly ever post on here but this thread has got to me, I had an amniocentesis due to high risk of DS & it came back negative - one of the worst experiences of my life due to procedure & then waiting for results. Turns out my son had a genetic condition that I & my son, & my whole family live with every day of our lives & it's fucking hard! He's a gorgeous boy & I love him but if there was a test that showed his condition up then I wouldn't hesitate on finishing the pregnancy. My ex-h & I decided not to have any more children for this reason & I went on to have a second baby with my new husband but my son's disability tore my first family apart & still creates massive difficulties for us every day. More information with less risk is only a good thing in my opinion, I'd never choose this life willingly.

Jinkx I have asked them to respond to me so I will let you know if they mention the number of complaints at all.

I had an amino with my 4th child as was adamant I would terminate a child with ds. Luckily she was fine. Why do people sssune others are incapable of making judgments on their own beliefs and lifestyles and 'need educating?' ice terminating s child with ds isn't really the same as terminating for red hair. Your dh sounds a bit strange.

I have seen families torn apart by having s disabled child and they don't of course stay children many elderly people have to cope with adult DS. It's bloody hard.

Sally should zip it and realise her views are fine for her but she has no bloody right to tell other women how to conduct their lives.
I watched the documentary with my teen ddsand it made us all angry.

Doggy

jinks totally agree with you on ff. it's s legitimate and personal choice and no ones business but mums.

You're welcome, Pandaponda. x