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?

not comparable but acceptable, sorry!

The consequences of selection against DS also has far-reaching consequences for society.

The birth of a girl as opposed to a boy can have hugely negative consequences for a woman and cause her a great deal of suffering - arguably more than would be endured by a woman in the West with a disabled child.

I trust that if women don't want to be going down that path they are capable of saying otherwise and asking questions about the diagnosis.

In saying that, you are dismissing the experiences of many women who have found the process is far from neutral and who have felt under pressure and misunderstood as a result. I also trust women but I don't think that's any argument not to scrutinise the experiences they have in relation to screening.

I don't agree that there are degrees of pro choice. Either you support 's womans right to make her own decisions or you don't.

If you feel that termination of pregnancy should only be allowed for certain reasons (decided by whom?) then that isn't pro choice.

I'm interested that so many women would support other women's right to screen the next generation women out of existence if they wanted to.

morris That's an extreme view and I doubt it would be widely supported - previous threads have always shown there is a spectrum of pro-choice attitudes.

'Societal consequences' from downs screening should not be a factor in a woman's personal decision to terminate or continue a pregnancy. There are no varying degrees of pro-choice. You either are or you aren't. That doesn't make you pro-life but definitely not pro-choice. It's more if a 'pro-choice but only when I agree that it's a valid reason even though it's not my life'.

Interesting discussion about this earlier on Radio 4. Tom Shakespeare - chair of Nuffield committee on bioethics said research so far with pilot programmes in the UK shows a lower rate of termination for Downs with NIPT test than under current amnio/CVS screening with 30% continuing with pregnancies after a positive result from NIPT test compared to 10% after amnio.

I'm glad to see so many questioning voices about the coverage of this documentary, which I've found to be very one-sided. One of the blog posts promoted by Mumsnet by a mother with a child with DS was asking people not to generalise about children with DS. However, so much coverage I see seems to do just that - children with DS are presented as high functioning, cheerful, life-enhancers. And of course some are and I'm so glad Ms Phillips feels that her family's life is so complete.

However, it's simplistic to say that all children with the condition are like that as much as it is for us to say all children are the same. One boy I know with DS has completely reeducated all the simplistic stereotypes I had held about charming cheerful tambourine playing members of a drama troupe. He is very very violent, continually spitting and seems quite unhappy. His parents' marriage has broken up, in part due to the huge strains caring for him has placed on them, and his siblings have behaviourial issues (which may or may not be as a result of the family dynamic). I'm not saying he should never have been born, but he does offer some antidote to the stereotypes that we are presented with.

I think it must be very hard for a parent of a much loved child to see a threatened 'eradication' of children like theirs, but I'm not sure that they are the right people to be deferring to on the question of what sounds like a valuable test. A friend of my daughter's, who has a brother with DS, told my daughter that 'we need to do something as the doctors are making a test to help people murder people like [name of brother].' While I sympathise with how the family might feel that their child is being invalidated, I didn't appreciate my 8-year-old being exposed to abortion being described as murder (and very inelegantly said as much).

Sugar you are referring to me I assume?

Right I see my role as a nurse is to support,facilitate, enable and empathise.

In my career as a nurse I saw women having terminations for every reason, these reasons are none of my or your business by the way, and their feelings ranged from deep sorrow, relief, fear, pragmatism and in a few cases indifference. And all in between.

Your comments that it's a 'thinly veiled way' to convince a woman to abort are disgusting frankly and clearly stem from your personal standpoint and you should be very careful that your feelings and attitudes are kept to yourself and not transferred to patients.

Some women immediately decide to terminate a disabled child, others immediately not. Sometimes these feelings change and a good HCP must support this. 'Giving patients permission to change their minds or make up their minds' and supporting their choices is the job.

I see you now work with children with special needs. So do I. and yes some families cope very well with all the demands a child with complex needs brings and some most certainly don't.

I see many older parents with adult children on their knees as they can't get help and these are parents in their 50s with children bigger than them in their 30s. It's a life time of care so yes we can all see the wonderful side of caring for such children but please don't try to present that it's all a bed of roses it isn't. Resources have been cut and will be cut more.

Quite frankly I hear parents say they get utterly sick of other people telling them 'arnt you fantastic' when they are often drowning and not waving.

Women deserve this test and then all the facts to help them make decisions on any pregnancy.

gonetosee I believe women should be able to terminate for any reason. Yes, including sex.

If there is a lot of sex selective abortion going on then that will be due to societal prejudice against the aborted sex. The solution is to tackle that prejudice. Not restrict abortion rights.

I would apply the same logic to terminations for DS. We should not restrict screening or termination rights. If there is a belief that babies with DS are being terminated due to uninformed prejudice then we should offer more information to tackle that prejudice.

I don't think that termination for DS is generally due to uninformed prejudice though. I think it's generally due to not wanting the extra hard work that comes with being the parent to a disabled child (especially as they get older). That's not prejudice.

pilot programmes in the UK shows a lower rate of termination for Downs with NIPT test than under current amnio/CVS screening with 30% continuing with pregnancies after a positive result from NIPT test compared to 10% after amnio

That's to be expected I guess as the NIPT group will include the women who never intended to terminate after a positive result and would therefore have turned down the CVS/amnio if offered.

The really interesting thing is whether anyone who would have refused amnio/CVS took the NIPT, got a positive result and decided to terminate. Those are the ones the campaigners are unhappy about, I suppose. I'm going to have a trawl around the Nuffield website and see if there's any info.

I'm going to have a search around and

morris. Totally agree. You either believe in a woman's right to bodily autonomy or you don't.

I really can't see any down sides to non invasive early testing and thus giving women knowledge. That gives them power to decide their choices. And any choice should be supported 100% by HCP.

Sally Phillips choose for Sally Phillips and that's How it should be for every other woman.

The really interesting thing is whether anyone who would have refused amnio/CVS took the NIPT, got a positive result and decided to terminate. Those are the ones the campaigners are unhappy about, I suppose.

This seems the crux of it. Women who declined the amnio/CVS because of the miscarriage risk now being offered a safer test. And making choices about their pregnancy based on the results of that safer test.

I find it very hard to understand objections to a safer version of a test that already exists. Unless you think that it's a good thing that pregnant women worried about miscarriage decline amnio/CVS.

"Surely the only right answer is to give people the best information possible to allow them to make their own informed decision based on their own circumstances? The choice whether to continue with a Downs pregnancy or not is hugely personal and is only the business of the individuals involved."

Absolutely this.

The test, presumably, isn't compulsory so it should be a matter of choice for an individual. The Sally Philips article in the papers recently suggested that this test was advocating the destruction of the 40,000 strong community of people with Down's Syndrome which is just a ridiculous thing to say.

"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."

Do you think that abortion should not be available to anyone for any baby with any disability?

What you say is incorrect though, a foetus is not a person. A person is not a foetus.

Exactly Maud

Personally, I feel there is a lot that needs to be changed with how hospitals and medical professionals deal with suspected/confirmed abnormalities.

Nearly six years ago I was pregnant with DS. I was so confident all would be well at the 'abnormality' scan I told DH not to bother coming. And until that point everything had been ok. The sonographer noticed DSs kidneys were bright, and referred us to a bigger hospital with a fantastic reputation nationally.

Long story short, he had a genetic abnormality that isn't always survivable - and in his case, he was unlikely to live.

We decided we did not want to terminate. The pressure from our consultant to terminate was phenomenal - every call, every visit was 'have you agreed to terminate yet?'. Knowing that his abdomen measured nearly 30cm, and that this was firm (due to what was happening inside his body) and not squishy, the consultant was insistent I go through a natural birth even though he explained a vaginal birth would kill our son and cause him to suffer. He tried everything he could to bully and manipulate us into termination. It was only when I asked for a mental health assessment in writing that he referred me to a junior colleague (and I never got that assessment). We were promised palliative care when he arrived to ensure he would not suffer - this never happened.

I now have regular flashbacks, and literal screaming nightmares if I have to go into hospital. Mainly around things being done to me or my children with their/my wishes not taken into account.

If I had been dealt with, with more understanding, I believe I wouldn't have those problems. My previous pregnancy had been very traumatic with an EMCS and I've had nightmares/flashbacks after that too - not waking up screaming ones, like I sometimes have now.

I'm not trying to ramble, it's just choice should mean choice - we should be free to choose termination (or not) and be supported in that. I am sad that there are many who won't agree when it comes to supporting people who don't terminate - and there isn't a huge amount of support for people who don't choose termination, and need extra resources and support to parent a child with extra needs, or emotional support when you know it's likely your child will have a short life.

I don't want to live in a world where a mother is condemned for choosing to terminate (or not). If we agree with choice, we need to support it, even if we don't agree with it.

Another thing that has been mentioned before is having clinics in the same place. I can understand not wanting to upset those with normal pregnancies, but always being shuffled off into the 'bad news room' and being treated as 'other' added to our sense of trauma. As did being given appointment times in subsequent pregnancies, but having to wait until end of clinic in case we had bad news. That made me cross - heaven forbid anyone else know what we're going through. Just give us a later sodding time.

Is it beyond our reasoning to hold a clinic for people like me on a different day, or at a different time, or would it get morbid?

I will need to hide this thread because I know some of you will judge me harshly for making the choice that was right for us. Please remember though, it is me who has to live with the consequences, not you.

The campaign is no more or less an anti choice agenda.

How dare people think they have the right to deny a test to a woman who chooses it? The decision to carry a baby to term or to terminate are decisions for the woman and the woman only.

Sally Phillips would do better campaigning for mote support and help for families with children living with complex needs than denying other women choices.

This seems the crux of it. Women who declined the amnio/CVS because of the miscarriage risk now being offered a safer test. And making choices about their pregnancy based on the results of that safer test.

Well yes, exactly. Their argument hangs on the idea that once you receive a positive test result there will be pressure from medics to terminate, and that that pressure will be enough to convince some people to make a decision to terminate that they will later regret/they will miss out on happiness they could have had.
I think nobody has a crystal ball and it's very hard to know how you would have felt if you took the other course of action. But given that, given that it's not straightforward, I think the only person who can make that decision is the woman who's going to bear most of the consequences of it. So safe testing can only be a good thing.

I also worry that this "information" - just information, just a view on real life with a child with Downs - would end up, if it was taken on as an important thing, being administered in the same way as the breastfeeding information is - i.e. there's pretty much no way to avoid sitting through the lecture even if you're 100% decided on what course of action you want to take.

Karen no one but no one on this thread would judge you in any way and I am sure we are all utterly disgusted at the way your HC I won't add professional acted!

Utterly disgusting and you have every right to be furious and upset.

As you rightly say all women should have any choices supported.

Before I go, I think non-invasive tests are progress. The reduction of risk is a good thing.

Even then, there will be people who choose not to have the test, and that choice needs to be respected as well.

Karen I felt incredibly sad and quite angry on your behalf reading about what you have been through. I can't think it justified in any way and I do agree that often the 'medical cascade' occurs and termination is presumed- I think there is some evidence from the States that when this is not the case, and women and couples are given more information and access to people who have children with DS, a larger % choose not to have an abortion. So, what medical professionals say and do counts enormously.

I'm so sorry you had to go through that, really, that is terrible.

I fully support a woman's right to choose to abort for any or no reason at all - that doesn't stop it from hurting me when I see people saying they'd choose to abort people with my disability (what it is is unimportant) and I'm sure many parents whose child has this or a similar disability feel the same, and that is where I feel the tv show and those against the testing are coming from. As a PP has mentioned continuing of ds pregnancies is higher with the non invasive test which isn't being spoken about quite as often in these discussions or in articles. If it's added at all it's an endnote.

I find similar black and white discussions on euthanasia where disabled people fear it would mean compulsory murdering of them when they became too much of a burden instead of what I perceive to be the point of allowing someone who consents to be put out of their misery.