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?

As someone who has experienced multiple miscarriages, including one which was because my baby turned out to have Edwards (found out because I insisted testing to try and find out why I had had a later than usual miscarriage), I can only welcome this new test.

I paid to have non-invasive testing done privately for a later pregnancy because I was so concerned about having to go through trauma again. The alternative amnio testing was just an horrendous prospect - not only do you have to wait until 16 weeks by which time the options for termination are not easy / traumatic but there is also a risk of miscarriage with the amnio.

Surely the test is a good thing? It gives much better information than the tests we have currently, and without the associated risks, and then people have a choice what to do.

And don't judge people for their choices.

I thought the documentary was very interesting. She didn't come across to me as advocating against the test, but just pointing out that many women feel medical policy is weighted towards termination and she wanted more balanced information on raising a child with Down's so women could make a more informed choice.

don't well red hair isn't THAT different...it is correlated with all sorts of increased risks of cancers, severe allergies and lower life expectancy.

It is somewhere on the same sliding scale...though clearly not as severe as DS.

And if you can have a free choice of embryo, then why chose the read haired one that will have additional problems throughout life (relatively minor though they are) over the brown haired one that won't?

"red hair isn't THAT different...it is correlated with all sorts of increased risks of cancers, severe allergies and lower life expectancy."

What, really? DP is a redhead, as are many of his family, and I know a lot of redheads (I'm Irish, so it's much more common here than in most other places), I have never heard that it's correlated with "all sorts of risks". I'm the one in the family with allergies, and I'm dark-haired.

(other than the raised skin cancer risk from being very fair-skinned, that I knew about)

That's the really difficult question isn't it? Should we have as much knowledge as possible about an embryo - the amount of knowledge will get more and more detailed.

I think there's a real philosophical question about when an embryo becomes "your child". Is it at conception in which case you see that pregnancy through pretty much regardless. Or is it some time later in which case maybe you do go for the best possible genetics for "your baby". "Your baby" being the final product.

Sorry I am articulating this quite badly I think. A way of thinking about it is cancer risk - if you could do a test which told you that your 4 week old embryo had a 95% of cancer in childhood how would you process that. I think, for me, I would not feel that that embryo was my baby yet. I would be really sad but i would abort and I would feel as though what I was doing was giving my (hoped for) baby the best shot at good health.

This doesn't mean that if I had a child with cancer I would wish they had never been born.

Obviously you then get onto whether it is at all fair to compare cancer with DS (or with height or red hair or bad teeth or intelligence). You have to start deciding what you are "allowed" to chose.

She is a born again Christian.
I'm amazed she was given this opportunity to spout her incredibly biased views.
More reproductive choice for women can only ever be a good thing IMO.
I too have seen families torn apart by having children with Lds. These sweet, cute kids grow up, and have to face a world they can't understand. Having a 15 stone adult with LDs attack you when you are in your 70s is the sad reality for many carers.
I find SPs stance actually very offensive.
It assumes women are too stupid to way up their choices. Nope. Their choices just don't tally with her beliefs.

Having said that, I don't oppose women receiving this information in a safe, healthy way but I have a huge problem with the way that this information is really imparted within the medical profession, and the fatalistic, resigned attitude to the lack of disability provision in our society that leaves parents of disabled children struggling and isolated.

That post is really fucking offensive gone. No one has suggested killing disabled infants, we're talking about women making a choice to terminate a pregnancy (a foetus, inside their own body), if they wish to do so.

It is somewhere on the same sliding scale...though clearly not as severe as DS

Um, no, red hair isn't associated with anything except higher skin cancer rates. Not heart defects, not earlier mortality, no nothing really. It's not a chromosomal abnormality. So, not really similar, although you make a good point that in the future, people may choose to test for seemingly 'trivial things such as eye or hair colour.

If I had red hair, and my husband said in anything other than complete jest that he'd abort a fetus with red hair, I would be very disturbed. Does he not like your hair!

most parents with learning disabillities love their children regardless Badders, i speak as the mother of a child with significant disabillities he has a rare chromosome disorder they are generally not tested for prenatally unless you already have a child with one, they too can cause significant learning disabillities [although some people are not greatly affected by them] up to 1 in 150/200 babies born are born with rare chromosome disorders yet we never here about these .

hear*

we should be agreeing that the best way to tackle that is to address disability discrimination and lack of provision in our society

Well you have a certain point there. And if there was more support for single mothers, I'm sure there would also be less abortions. However women should still have the choice.

gone so how would you suggest medical information such as the early onset of dementia be presented? As in the other thread, a medical literature search suggests it's fairly ubiquitous with adults with DS with onset from 35-40 years. Don't worry : it'll be hard and you'll be elderly but there'll be loads of community support?
Or : there's a 40-50% chance of congenital heart defects but it's all very fixable with open heart sugary as a baby?
Or : children with DS are so happy and affectionate. Unless they have autism which they have a higher risk of.
Or : there's an increased risk of bowel problems but we have a fairly awesome gastroenterologist?

I think there's a medical responsibility to lay out the medical and developmental and behavioural issues associated with DS. I agree there shouldn't be pressure to terminate or even assumption that termination is the default position and I agree that women should be supported in all of their choices. However, the medical view will often be tainted by children and families with DS with high needs, or with increasing needs as they age. It's extremely valid for people with children with DS to highlight the positives for their family, but I think that support and awareness should come from community groups.

I agree we should tackle disability discrimination and lack of provision for disabled people. That doesn't take away from the fact that people can and should choose to end a pregnancy if they wish for whatever reason they want to. I am pregnant, if my tests come back that this foetus has DS I will probably terminate for the reason that it is the best decision for me and my family. Our eyes are open, not everyone who terminates a child because of DS does it because of lack of knowledge or pressure from medics. Hopefully we won't have to make that decision but it is something that we discussed during our last pregnancy in depth and have discussed again this time (and other things too, not just DS but that's what this thread is about). We have both experienced DS on a personal level and I have professionally. This does not take away from anyone who has DS and I don't think that others should make the same decision as me, they should do what is best for them.

I thought the part of the documentary where SP questioned the lady on why she terminated was appalling. No one should ever have to justify why they terminated a pregnancy, the same way that no one should have to justify why they didn't terminate a pregnancy.

my child with severe autism is very loving and affectionate .

When we talk about why gender selection is disastrous for a society, we agree that the best way to tackle that is to tackle gender discrimination in a society, rather to feel it's fine for woman to abort girls because those mothers will suffer if they give birth to girls. When we talk about aborting disabled infants because their mothers will suffer in raising them, we should be agreeing that the best way to tackle that is to address disability discrimination and lack of provision in our society.

But the two things (aborting for sex and for disability) are not the same to the wider society. There is a fairly immediate (within a generation) and very severe detriment to society if a large number of female foetuses are aborted. The same is not true for aborting babies with DS, it just isn't.

x2boys good point. I was just trying to emphasise - badly - that the increased incidence of autism is often glossed over. The accepted narrative is that children with DS often have great non verbal social skills and are unusually affectionate and outwardly physically demonstrative. Whereas social/communication difficulties are instrinic to an ASD diagnosis.

I think it's completely reasonable that SP and co are opening up a discussion about people with disabilities. I think it's completely unreasonable that her idea of a "balanced" medical view doesn't mean presenting things like heart defects in an upbeat, medical technology has advanced so much type of way. I also think it's very wrong to want to deny women the option of safer, earlier testing because of your own agenda.

doesnt = does, obviously!

Not my intention to be offensive daisy but an unborn child with ds can be aborted up to full term.

I find that pretty fucking offensive to be honest.

For the last three generations in my family on both sides, there have been cancers,degenerative disorders and other serious ailments of a possibly hereditary nature, some very likely to be passed on. It is not uncommon. When talking about the health problems that can be associated with Ds we shouldn't be comparing it with some mythical 100% clean bill of health. Every baby has possible problems in their DNA, it's just easier to predict with DS. But we usually place those risks in context - only with disabilities we don't understand do we allow those possibilities to completely dominate what else the child might become.

No idea what you mean when you say awareness should come from community groups surprised. Hope you're not trying to pass on another burden to already overstretched and unsupported parentsof disabled children.

Society has exactly the same responsibility to make itself supportive and inclusive to people with disabilities including DS as it does to reduce discrimination for women, children, the elderly, ethnic minorities... No group is more deserving of life than another.

I don't believe it is necessarily right for women to justify aborting for any reason they wish. Look at societies which now have hardly any women as a result of this kind of thinking and where women are now being trafficked in - of course the onus is on society to change but you have to tackle issues on every front.

"No idea what you mean when you say awareness should come from community groups..."

Well, I mean that the narrative about a child who will enrich your life in spite of all of the difficulties shouldn't come from the medics. They'll have seen people for whom it didn't.

I don't believe it is necessarily right for women to justify aborting for any reason they wish

I do.

I just saw the documentary and thought it was a bit disturbing. It made me feel like wanting to have a normal child without DS made me a selfish person. Where was the balance with families who can't afford a full time nurse, or who aren't as wealthy as Sally. Who looks after the children when the parents are in their seventies and pass on?

I realise others believe differently but if I was given the choice between an embryo that will develop into a baby with DS and an embryo without DS I would abort the former and go with the latter. Every woman should be allowed that choice and they should not be made to feel bad/guilty or selfish for making it.

.

It's promoting the stance that women should only be allowed to have terminations for reasons that other people find acceptable.

No longer....exactly!