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?

People like Sally Phillips sharing shiny pictures of their well-resourced lives and judging other people's choices get on my nerves. For many people, living with severe disability is not the way she presents it at all: it's physically, emotionally and financially gruelling. People deserve to see all possible 'sides' when deciding what to do.

Oh and my point about MN is that they seem to have jumped on the bandwagon of the general news coverage this is getting showcasing blogs that, whilst providing moving accounts of personal experiences, are not giving any more balanced a view of the pluses and minuses of the new test than the DM coverage.

I would have expected a more nuanced view given MN have a whole editorial section on Pregnancy including information on scans, amnio, CVS and antenatal choices.

100% agree op. I had an amino with my 4 th child as no way did we want a child that would need life long care. I have 2 friends who have Down syndrome siblings and now the parents are in their 80s the siblings have to assume care and both resent it massively.

However that's our personal choice and I absolutely totally think any woman has the right to continue with any pregnancy and should expect 100% support from HCP and respect for her choices just as those who choose termination should be supported and not judged.

Early safe non invasive testing Has to be the way forward.

Its very, very far from ignorant.
Whether its wrong or not is down to how you are looking at it.

If I'm so very very mistaken then why not actually answer my point? There's no 'how you are looking at it', either this screening includes life limiting conditions or not. You contend it doesn't.

So please, explain to me how Pataus (for example) is not life limiting?

NIPT isn't actually comprehensive either. DD2 had a 22q deletion which wouldn't be picked up on a harmony test according to my consultant. I do think MN is really one sided on this issue. I've argued on many threads and guest posts about how these tests lead to 'eugenics'.

If this test was available to me I would take it even though I definitely wouldn't abort a child with special needs - my DS has special needs after a premature birth and although sometimes this presents challenges he is as loved and cherished as my typically developing DD.

However, discovering he had a disability was hard. His needs became apparent as he missed milestones rather than at birth so we had an inkling of what was up, making it less of a shock than if we'd discovered it at his birth but if I could have known in advance of his birth and been able to prepare for raising a disabled child I would have liked to.

I'm an SEN teacher and taught a boy with pateau's syndrome who didn't leave the hospital for the first 7 months of his life so being able to take the test, even if you wouldn't abort, and being able to prepare for having a child with such complex medical needs seems reasonable to me. It doesn't necessarily mean women will abort.

There is no other logical reason for the testing and the amount of money poured into screening for a non-fatal, non-life limiting condition.
The screening is for much more than downs syndrome. Many of which are life limiting and potentially fatal.

The threads definitely have the different views and dynamics but every single guest post from Mumsnet I've seen on the subject has been on the "testing is eugenics" side.

I work with people with various disabilities and their families. I've spoken to many women about their experiences as mothers to be who have had screening for DS come back positive. In all of the people that I spoke to, the doctors first suggestion is termination. How is that giving women a choice?

Like a prior poster I paid for the harmony test privately earlier this year. My view was that i'd rather know the outcome of these tests for certain, earlier in the pregnancy than offered by amnio and CVS and if the NHS doesn't offer it, well its part of the cost of raising a child. And if i can't afford this test then perhaps i should consider pushing back getting pregnant until the money wasn't a significant issue.

After sharing news of my pregnancy with family, I was subsequently made aware of a family history of cystic fibrosis and had to go through the anguish of deciding whether to have CVS. Just based on the experience of a week of umming and ahhing over the risks of miscarriage posed by CVS to an otherwise healthy pregnancy, I really feel for everyone who has to undergo invasive testing when a simple blood test is available, nearly two months earlier. (It turns out there's also a private blood test for CVS so I didn't need an invasive test in the end).

Other than potential cost impacts, for which a full impact assessment would be useful to understand (i.e. Cost differences between later terminations v earlier terminations for those who would have terminated either way), I don't see any reason to exclude any pregnant women from getting the new style testing. So I would go even further than the OP and say this test should really be offered to everyone. Or if its not going to be, save up and pay for it yourself in order to arm yourself with the information it provides.

I can see both sides.

Ultimately the test wouldn't be offered if there was no chance women might wish to abort a baby with DS - so the gene mutation is defined as a 'defect' by the offer to screen for it. It's not a neutral invitation to simply offer more information when the act of offering screening implicitly lumps DS in with everything else that could potentially go wrong with a foetus. It brings DS into the same 'do we abort?' dialogue as ailments that are genuinely incompatible with life. As much as I want women to have information, offering this piece of information (i.e., whether or not their child has DS) and very little else is distasteful to me.

The upshot of it will be that women know less and less about DS as a cycle is set up whereby more babies are aborted because it is known they have DS, leading to a lack of understanding about DS and acceptance/community provision which will eventually limit choices for women because they will feel less able to cope with the reality of DS.

I'm not saying that justifies not screening necessarily but we might as well be honest about why they're doing it and the probable outcome. Which yes, I think is sad. That said, I am coming at this from a perspective where I wouldn't abort a baby with DS anyway, so the screening wouldn't be a great deal of use to me.

On the point about the tests existing to prevent disabled babies being born: I'm honestly not sure. I had amnio, having been told that DD was at high risk of chromosomal abnormality. I truly didn't know how I would react to a positive diagnosis - but I was certain I wanted the information so I could think and plan.

I worry that the test will be given without the proper amount of aftercare. To enable people with a 'positive' test to make the choice with the proper amount of information and counselling.

If I'd known about DS2's disabilities before he'd been born I'd have proceeded with the pregnancy anyway. But it would have helped me to understand just what a sodding fight everything would be. And that I wasn't alone and that there was no need to sweat some things. But that others needed pushing for before it was too late.

I would also second what sugar has said. The reality of women's experiences seems to be that they aren't just 'offered' screening and then left to make whatever decision they want to. HCP are aware they are screening because a pregnancy may well be terminated in the event that there is a defect. Pragmatically, why else would they offer it? So in the event that something is wrong, there is a leaning towards termination as an option on the part of some HCPs, even if that is only in their manner or repetitive offers to terminate. This can result in scenarios where women opt for the screening to have more information with which to make a choice, but end up being heavily influenced in how they choose to use that information. Anecdotally, I'm aware that some women feel pressure to abort in the event that a screening for abnormalities is positive. If that's true, you're left with a situation where the NHS is offering women choices with one hand and screening expensive patients out of existence with the other.

Sorry-to clarify my last sentence, too late to do anything about, not in the sense that he passed away.

If approached from the point of view that knowledge is power, the tests can only be a positive.

What people chose to do with that knowledge once it is obtained, is their business.

Re doctors leaning towards termination - tentative yes, but I also think this is because there can be an overly sentimental and saccharine outlook towards Down's syndrome as a condition. The truth can often be a lot more difficult than the largely positive media portrayals that the syndrome elicits.

What jessica said. Absolutely.

It really annoys me that, as other posters have said on this thread, these tests are presented as all about DS. I've seen so many posters say "I declined the screening because I wouldn't terminate for Downs" and they just aren't aware that the screening tests also test for Edwards and Patau's which are incompatible with life.

I have had a late termination for medical reasons - for a much rarer genetic condition which was only properly diagnosed very late in my pregnancy. I didn't think my baby would have had a great quality of life but, honestly, the main reason why we made the decision to terminate was our quality of life. Parents of SN children have it so hard - it seems like it's almost impossible, for example, for both of you to carry on with careers.

The single thing that would have influenced me most to continue with the pregnancy would have been if I had felt like there was sufficient support out there to allow my DH & I to parent in a similar way to if we had had a healthy child (i.e. the ability to work, the ability to find childcare, the ability to retire without having to worry about our child.) If I were a wealthy actress with a shipping magnate husband, potentially I would not have terminated. I think Sally Phillips and others should focus on providing support to parents of SN children and making that an easier path to follow.

Agree notinagreatplace - those are my thoughts too

mrsdevere - I'm not trying 'to start something'. You stated the testing was screening for non-fatal, non-life limiting conditions. I said I believed this was wrong, and gave you my reasoning (to the best of my knowledge this testing does screen for life limiting conditions). You say I'm wrong, but didn't explain why, so naturally (wanting to learn more) I've asked you to explain, and you refuse.

I don't see that asking for more information about something you have started as a fact is 'disrespecting' you in some way, but I certainly won't engage with you further if that is your preference.

I'm not going to be convinced by some one who says 'you're wrong but I won't tell you why', though.