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?

Disclaimers: I've not read the full thread and I have a child with Down's syndrome.

First off I'm looking forward to Sally's program. I think it asks a good question / what sort of world do we want?

Secondly I agree the focus is ALWAYS downs. You see it in thread after thread here people only ever talk about a downs risk.

Thirdly, I live in NI where termination is not an option but it is my understanding that where it's is, the automatic assumption is that you will terminate. There needs to be a more balanced and realistic view and if there are fewer and fewer children with downs then it becomes more and more of a "monster".

There are so many misconceptions and preconceptions - someone above mentioned being able to work, DP and I both work full time. We have a "normal" family life.

Fourthly I do believe it is a slippery slope - if other conditions can be assessed pre-natal then where do we draw the line? If someone is genetically more pre-disposed to cancer for example is that different because they can be cured? Is it because downs is somehow a burden on society? Or is it because it's easier to test for?

What IS the big fear?

I agree with that, Real

There is SO much literature surrounding terminating a pregnancy even at an early stage loftily informing women they will feel guilt, shame, sadness - and a termination at the 20 week stage must be horrendous.

I can quite see how it must be hard for people to read if they have a child with a disability, but really one persons choice is just that and a choice someone else has made for their family shouldn't impact on that.

No mother aborts her profoundly disabled unborn baby without a lot of soul searching and research. Implying women who opt for abortion just blindly accept the status quo while women who keep the baby don't, is insulting. Most of the families I know who kept Downs kids either didn't get the test/didn't fully understand the test results or were hoping it was inaccurate. This sounds blunt, and I apologise if it insults anyone because I don't mean it to, but nobody I know kept a Downs baby because they wanted a Downs baby. Harsh but true. A more accurate test is a great idea and will save a lot of families from great heartbreak.

Wips, my best friend has elicited not to have birth children due to a family genetic tendency towards the same rare cancer.

She is making her choice based on the information she has, just as women having the test will.

I never once found that I was pressured into termination. Anecdotal obviously, but I was the one who actually asked for the wheels to be put into place after it was confirmed that if we were lucky DD2 would die within her first years and in pain. They were offering me surgical consults and meetings with the team that would support DD. That was Birmingham Fetal Medicine centre. They were absolutely brilliant. As someone who has been through it, I don't see the pressure but obviously that won't be the same for everyone.

I had none of my children screened and I won't again either. I know many do and I believe it's a personal choice and if better tests are available then that's great.

light yes that's exactly what I was trying to say, clearly badly, and so pleased you were supported.

fleur its person with downs or child with downs not "downs baby" - that's maybe been said already on the thread?

Obviously I do know people who had a pre- natal diagnosis and kept the baby. And are very happy

Also downs isn't a "profound" disability. It's a spectrum.

As someone who had prenatal screening and opted to continue the pregnancy with a diagnosis of trisomy 18, I support the introduction of NIPT on the NHS.

Knowledge is very much power for those who wish to continue the pregnancy and those who do not. NIPT enables earlier diagnosis and planning for both groups. NIPT will reduce the number of invasive tests, though I do wish people would understand that for the three main trisomies it will not replace amnio just reduce numbers. It is a screening test not diagnostic.

What needs to change is how the news is broken to families when their child tests positive. Even on this thread people have described t18 and t13 as 'incompatible with life' outdated and inaccurate at best. Parents who receive a diagnosis need accurate information about the overall prognosis of the condition and their child's individual prognosis based on their presentation. Sadly the goal of screening is to screen out children with disabilities. But it is the attitude that needs to change not the screening.

For us there were so many advantages to prenatal diagnosis
-we were able to arrange the screening and monitoring she needed to reduce the risk of stillbirth

• we had time to fight the hospital to ensure she got basic treatment rather than the suggested means of hastening death with morphine and using fans to relieve respiratory distress
• we were overjoyed at her birth, not shocked, not disappointed, not sad
• we knew a lot about her condition. So many people are lied to by medics when they have a postnatal

Diagnosis of t18 or t13.

I think women should be able to terminate pregnancies for any reason whatsoever, a trisomy, female sex, a disability of any type, red hair. If they're going to do this then surely it is better they have the opportunity to do so earlier.

Normally, I do try to be understanding of differing viewpoints but I have to admit I struggle to see the 'other side' on this as it were.

A woman who posted to say she was unexpectedly pregnant with a third baby, couldn't afford a third, didn't feel she had the time to give no3 a good quality of life along with her other two children - we would presumably support in her decision to terminate, assuming of course it was her decision.

I doubt anyone with three or more children would post to tell us warm anecdotes about their third baby, explain earnestly that they thought they could never cope and yet they could, or feel that a woman choosing not to keep her third was in some way a personal slight on their third baby and their choice.

I don't understand why this is any different. The more people know, the more options they have available. This does not equate to having to take one of these options.

I think there is some implicit criticism MrsDeVere stemming from the fact that some women will opt to terminate when Down's is detected, not from your good self :)

Comments about it being a 'slippery slope' imply, albeit not saying outright, that it is seen as wrong and immoral in some way.

I think anything that makes the testing safer for women and babies is worth supporting.
I have had a termination for Downs. I'm not ashamed, it was the right thing for me and my family. I would never judge anyone either way and expect the same courtesy.

Thanks for that post jessica spot on I feel.

The criticism of those women who terminate is implicit in any suggestion that the NIPT shouldn't be available. The fact is, most women don't want to proceed to have a child with downs, mostly because of the impact it will have on their life. That's not so different to not wanting to have a child at 15 or when you're in an abusive relationship or when you already have 7 kids. Except that you have the information about your current life circumstances and you need medical assistance to find out about chromosome problems. If you support women's right to control their own bodies you have to support their right to have information they find relevant. Support for the right to choose involves the woman's decision taking priority over other issues.

It's very easy to google and find positive stories about people with downs, it's pretty patronizing to assume people just won't bother before they make a decision to terminate. I've been googling since it was mentioned to me as a possibility last week (and I am 31 weeks, I won't be terminating for any reason, but I fully support any woman who would choose to).

Saying it is a 'slippery slope' is not a judgement of individuals and the incredibly hard decisions they make, but is used in the wider context of the ethics of pre natal screening and advances in genetic science. It may be an upsetting and difficult conversation to have, for everyone involved, but it is a crucial conversation to have because we are heading down a twisty road.

MrsDeVere and WaspsGlitter, without in anyway wishing to be disrespectful - aren't you both essentially saying that termination should not be an option because of DS?

Both of your posts seem to suggest that people wouldn't abort if they were given a true picture of DS.

It reminded me of this article by a geneticist who is also head of the charity Future of Down's. It's mostly talking about how the NHS can better advise after a positive result (great) but then veers off...

"Genetic counsellors are trained to guide parents in a manner that enables them to make decisions appropriate to their personal and family situation, and yet genetic counsellors are rarely involved in prenatal screening for Down's syndrome and are in short supply in the UK. Parents who choose to terminate do not, of course, consciously act out of discrimination but from fear of the unknown and a deep-seated attitude that is borne out of centuries-old discrimination against individuals with learning difficulties. "

Do you see what I mean?

I think it illustrates how the underlying point here is that those currently campaigning against NIPT, do not believe that abortion is a valid choice following a DS diagnosis. It is a pro-life/pro-choice argument in sheep's clothing.

It's for Edwards and Pataus as well, which are conditions incompatible with life.

Thank you to whoever pointed this out. I have a balanced translation that resulted in approx 1/6 of my eggs having the extra chromosome for Patau's. There are no happy outcomes with Patau's, only decisions that are more or less heartbreaking. I had my kids by IVF with PGD and was offered amnio which I turned down on the reasoning that I would prefer to take having a baby to watch it die than risk a healthy baby in an amnio. I am very, very happy that I never had to face the consequences of that choice, and I think it's fantastic that other people won't have to make that choice.

I have experience of this as I have had a child with a broad spectrum genetic condition which did not show up on the CVS test at 12 weeks. We found out at 28 weeks when pregnancy developed complications. My beautiful son died 13 years ago just a few months old of a serious heart condition - he never left neo natal intensive care. Several years later I had a Downs pregnancy which I terminated at 12 weeks. It was a very, very difficult decision but there was no way of telling at 12 weeks gestation what health problems this baby would have had. There is no way I would put another child or my family through what happened to DS1. At the severe end of the spectrum babies with Downs and the condition my first baby had can have symptoms that are just as serious as Edwards and Pataus. I celebrate diversity, I would have loved to still be DS1's mum if he had lived. But all parents have the right to the best information available at the earliest point possible about any possible chromosomal/genetic disorders. All parents have the right to make decisions that are right for their families, the values, their circumstances. I hate these debates which pit parents of kids with genetic /chromosomal disorders against parents who make the very painful decision to terminate. I have experienced both sides and we are all just trying to do the best we can in difficult circumstances.

Hazey, if it was the case that this country only permitted terminations on the grounds of Down's syndrome or other disorders I would agree but we do not. In terms of medical ethics then, it seems bananas to me to deny a woman a full picture and if the news isn't what she wants she may terminate, when she would be permitted to terminate anyway if she decided she no longer wanted the baby.

In other words, termination is always an option, but to in effect say 'you may terminate because your relationship failed, you are too young or lost your job' is fine but 'salient information that will impact on you and your family for the rest of your life may be withheld in case you decide to terminate' is decidedly bizarre.

I agree that it's a pro-life/pro-choice argument in sheep's clothing.

Why is aborting for DS any different than aborting for "social" reasons?

I fully support someone choosing to have a child with DS and the UK govt should provide medical/social/schooling support for that child to make the best of their opportunities
I also fully support someone choosing not to have a child with DS

My support for the person choosing termination doesn't mean I think people with DS are worth less

When there was a high risk of ds in my first pregnancy 5 years ago all the nhs literature and staff I encountered were negative about the future of the baby and I felt pressured into rushing into things to make the termination 'easier'. I had cvs which was horrific.

Whilst waiting for the results I decided I wouldn't terminate the pregnancy as we educated ourselves about the realities of ds, not just the worst case scenario.

I think a non invasive test should be offered to anyone who wants one so they can be informed. I also think a balanced view of the syndromes tested for should be shared with parents to support them in making truly infomed decisions.

Real - I do agree with what you have said on this thread. I have a very disabled sibling and a very elderly mother who is still their carer. It's whole life commitment day in day out for my mother. There is a great deal of emphasis on the positives of DS children, but childhood is such a short part of someone's life - it's the easy part really, when there is school and support. Life as a disabled adult, especially with potential health issues can be very cruel.

There certainly should be every opportunity for parents to have this screening

I'm not saying it shouldn't be an option. If people get the full picture and still chose to terminate fine. Their choice.

The overwhelming opinion on these sort of threads is it's ok to terminate with downs. I respect that. But it is incredibly hard to look at your own lovely, happy, fulfilled child and read these posts.