To think a test for downs that is nearly 100% accurate will not result in more terminations

[PlayOnWurtz]

I'm getting increasingly annoyed with Sally Philips at the moment and her insistence testing for downs syndrome is a negative thing and that living with someone with downs syndrome is a wholly positive experience.

Whatever happened to choice? Who is she to lay the guilt trip on people? Why is it seen as shameful to say "I would not be able to raise a person with significant health and learning disabilities" and seen as a negative decision made on a whim rather than a decision made with consideration and thought and heartache?

What is there to argue about.

It's the woman's right to choose.

It's the right of everyone with an important choice to make to have the best possible information on which to make it.

Put those propositions together and you have your answer.

jellybeans - I don't remember there being a parent of a Down's child who terminated a second Down's pregnancy. There was one woman (Kate) who had a termination after a prenatal diagnosis of Down's, and another woman who had a daughter with Down's but declined to have any screening in her second pregnancy.

In nauture an animal would spontaneously( miscarry) abort a fetus with Down syndrome. This is detramental to the survival of its species. This dosn't happen in humans because, before the 20th century most wouldn't have made it past there first birthday. Sad I know. As humans we aim for the best, with out this attitude we wouldn't be who we are(selfish). We're not talking about physical disability here( because we can adapt). Mabey people who abort are only acting on instinct.

I haven't aborted but would have if my amnios showed DS or any of the other chromosomal abnormalities they tested for.

That decision was the result of cold calculation, the opposite of instinct.

I am pro life. I believe that life is precious from the moment of conception and that this does not change irrespective of whether the mother decides to abort the baby or not. People do talk about the rights that women have over their bodies but what about the rights of the unborn potential woman (or man) in their womb? I think that using the word foetus and not baby is an issue of semantics really.
I was given a high risk for DS with my both my dc and offered anmios but refused them. I was really nervous of the idea of have a child with DS but they didn't have it. I do not judge anyone who has had an abortion.
I am pretty sure however that the numbers of abortions will increase due to the NIPT. Currently 90% of people who find they have a child with Downs, do abort and many who do have children with Downs, have missed being diagnosed with it, if that's the right word.
I know the vast majority of people on MN disagree with my view, but I feel it is important to be heard too.

Are you? So what petitions or causes are you involved with to campaign for more support for families with disabled children and disabled adults.

but what about the rights of the unborn potential woman (or man) in their womb?

The rights of an actual living, breathing, sentient woman trump the rights of a potential life which cannot survive without the body of the woman it is inside. I've actually become more strongly pro choice since becoming a mother because it really brought home to me how difficult and dangerous pregnancy and birth can be for a woman and I do not believe she should have to go through that against her will to protect the theoretical rights of a non sentient being.

People do talk about the rights that women have over their bodies but what about the rights of the unborn potential woman (or man) in their womb?

Let me ask you this then. Why do organ donors need to sign consent forms to have their organs donated? Do the people who need those life saving organs not also have the right to life. You are not obligated to use your organs to save another life.

On that same vein, if saving a life is more important than body autonomy then why would it be wrong to force someone to have an operation to give up their spare kidney to a person who needed it? Why can't we just kidnap people and harvest their organs, provided we keep them alive afterwards?

Body consent comes before the life of another person. That includes babies. Corpses have more rights than women do.

It just doesn't matter if they abort a baby because they have a disability. It doesn't matter if they abort a baby because they wanted a different gender. It's important to keep those options open no matter what and give women full body autonomy, and in the mean time establish better support programs so that abortion doesn't look as attractive.

Twenty-two years ago I had CVS, a new test at the time, which enabled a chromosome count to be done and thereby identify chromosomal-indicated conditions, e.g. Down's and Turner's syndromes.

The test was only available to older women.

I remember reading few years later that the age of mothers giving birth to babies with Down's syndrome had moved down to the 30s, women who fell outside routine CVS testing, the implication being that the older women, knowing their results, were more likely to choose abortion.

I can't find this research, it was so long go, but I'm surprised it's news now when it was known then.

I think a risk free test that can provide a clear yes/no on downs will get wide take up and will result in more terminations

It makes me sad because I have a severely disabled child and with less disabled people in the world it will be harder to get people to understand what it's like. My daughter has brought about extraordinary changes in my life. Some I'd give back in a heartbeat but there is something in loving someone who can't really 'do' anything. She's autistic with a severely learning disability. Perfectly healthy just understanding and communication of a baby. It's unbelievably challenging to look after her and we really need more help than we can access. But the love is so pure (for want of a better word) it's taught me so much. I think even when we try not to love gets embroiled in other things like pride and competition. When lots of that is not available (and I do still have pride and goals for my girlI admit but they are so far put of the mainstream it sometimes feels like we are in x parallel universe) you start to see things differently. Many people with downs ate far higher functioning than my child may ever be. But it feels like we are going to lose part of our community. I know that's a bit stupid and a fantasy that we have this community but I think an inclusive supportive society would be better.

I think it comes down to 'every child a wanted child' Those with additional needs should be supported and helped.

Women who do not want a child with a known disability should not be forced to have one.

Yes, lets have all the information there is. But if the anti-choicers were out fundraising for more assistance for the disabled, it would make more sense.

Still, at least we arent America where you can get shot for wanting the choice.

Following on from mawkish post above. Maybe all parents feel like that. But I also worry that if you chose not to terminate you become responsible for the support costs etc as you chose to have a disabled child therefore your responsibility to pay for this. Without that kind of support or similar (big family or plenty of money) I'm not sure you can chose to have a child with downs. So then how is it a choice for most people? Lots of people on here say they would be too self-centred or too scared to go ahead with a pregnancy of a potentially severely disabled child. The thing is most parents of severely disabled children would have thought the same and usually spend a fair bit of time getting to terms either that. Sometimes people say to me 'I couldn't do what you do' snd I think you forget I have no choice as well as you only find out what you can do as you get on with doing it. Seeing more disabled people around makes you see it can be done. It helps. I will miss the downs kiddies I see about.

I would have aborted my last baby if the amino had shown abnormalities. No instinct but sheer commen sense and the right decision for me.

Get the point the right decision for me none else's business to question my choices about my body.

Of course every woman should be offered this test. If that results in 100% terminations of babies with downs or other conditions then so be it.

A pregnant woman should have full bodily autonomy. That is it.

last. I think your post is a lesson to us all and I think you are right about society and inclusion but that still does not trump an individual woman's right to control her choices for her own body.

Really MNHQ? you've deleted that post, presumably on the trigger happy report of someone on another thread, who didn't even read it properly. lasttimeround was talking about her OWN post, not labelling someone else's post as mawkish.

I had amnio with both my DC because of my age. Was prepared to take the risk of mc because I needed to know and would have aborted if they had DS or any other major identifiable problem. Luckily I didn't need to and could relax and enjoy the rest of my pregnancy. The new test gives a much earlier result which can only be a good thing. If women want to continue with a DS pregnancy they have longer to research the issues, if they are uncertain they have more time to decide and if, like me, they decide to bail, early abortion is safer and less traumatic.

The only reason for trying to limit the test is, as others have written with great eloquence, to reduce choice.

Yes having an amino isn't a pleasent experience and I was fully aware I could be risking Miscarriage of a much wanted baby who may not even have DS.

A non invasive test at an earlier stage would have been much better.

Err. . not sure why my post was deleted. I meant "mawkish" about my own post. Don't think there was anything insulting to anyone personally. But It's an emotive subject I don't mean to upset anyone.
I was just trying to point out I'm worried about disability becoming something parents are seen to have chosen (post test) and that this would reduce support available to them. In which case it'd be very hard to say I choose to raise a child with a disability that will need a great deal of additional support unless you've a huge supportive family network or lots of cash to pay for the extra hands you'll need. How's that a choice? Maybe this will get deleted too?

I don't think it trumps a woman's right to chose either but I think i see more now (since having a disabled child) how those choices are structured and I can't help but feel sad. I wish it wasn't such a struggle for support and I wish more people got to know of or experience the joy you can get. I think many people see what's hard (those not busy ignoring us like crazy) very few see the amazingness and it's hard to put into words. I've loved Sally Phillips attempts to speak about that although I can see most people felt she wasn't impartial enough or too emotive or from a position of being too privileged to endure the drawbacks ( I haven't watch the recent programme but she's commented elsewhere fairly often. It's hard to speak about something people don't really believe exists or think is a sort of over compensation. When to me it has felt more like a revelation.

Thing is, even if we screen for genetic disorders there are lots of other disabilities that either can't be tested for or which turn up later in life. One of my dc has a disability and I know how hard that can be. It's not that I'd send my child back but I wouldn't have volunteered him or me for it although medical advances have now transformed life for him.

For about a decade we used to be in and out of hospital. We were often on the children's ward with a child so disabled she appeared to have no quality of life, or very little. She was barely conscious. Her parents always looked so grey, so sad and utterly exhausted. The admissions were due to infections, pneumonia I think. If it were my child I think I might reach the point where I refused antibiotics on her behalf. Having a disabled child can be a wonderful experience. It can also wreck your life and those of any siblings.

So sorry lasttimeround, we misread your post. We've reinstated having realised our mistake. Thanks for reporting and flagging to us!

Can you imagine anyone seriously advocating critical information being withheld in any other walk of life?

"Yes, you have valid concerns that the house you are considering buying may be subsiding. Your surveyor, however, feels that this information is best withheld from you as it will probably influence your decision to proceed with the purchase. We want you to buy the house, and the best chance we have of making that happen is to deny you the critical information you need. We think we know best what is good for you (and we actually dont care if we are wrong about that) so we have decided that you are best not knowing, and in all likelihood you'll grow to love it. Possibly love it so much that you will accept the resultant stress, irreversibility and financial implications, and not resent having being coerced into a course of action you would not have chosen freely."

Nobody who endorses withholding pregnancy information of any sort from any woman has the right to call themselves pro-choice.

If you seek in any way to pressure a pregnant woman to make choices about her pregnancy, or you would remove her information and thus her informed consent, you owe it to pregnant women everywhere to stay the hell away from them.

The 'unborn' have no rights, in my view.

Yes, I would abort in this scenario: it is one thing for a child to develop a significant disability, but I see no reason to deliberately bring this onto myself, and more importantly, them, with all the challenges it will bring.

I have a cancer causing gene (SDHB), and it has been explained to me that, should I wish to have children, I can genetically select for those eggs without the mutation. I certainly would.

I also have a deafness gene (unidentified), and this is more of a grey area; but again, if I knew what one it was, I would choose to abolish it (I do o.k with a cochlear implant, but have been massively affected in many ways).

This does not mean I think it is the right choice for everyone. I have no doubt that people with DS can, and indeed to, live rich and fulfilling lives; but it's not a challenge I'm up for, and shouldn't be judged for that.

Having just had the NIFTY test for a raised NT of 4.2mm I can explain my position and reasoning. No, I wasn't going into the test to abort a child with DS. I was told I had a significant chance of a child with a chromosomal defect (pataus/Edwards and more) - some of which were devastating diagnoses and would have resulted in an awful outcome for the child and ourselves. Having been given the 1:5 risk it was far less of a risk to the baby to have NIPT.

We had decided, despite knowing the potential levels of function/potential health risks of a child with DS, this would be our most acceptable outcome if there was a chromosomal problem. No one sets out to have a child with any sort of issue and no one can guarantee your child will have no issue regardless of any test (a friend has a child with a syndrome that has not been identified previously and was seemingly well til 6 months). What can be done is information provision to the parents to be - does my child have a chromosomal problem and do they have any overwhelming health problems that may mean incompatibility with life or risks of infant mortality?

We were prepared to deal with DS if we needed to. I'm sure no parent of a child would say that they were happy when told they may have a child with DS - all would have adapted to that information in time. NIPT gave me a 9 day wait and I had 9 days of grieving for the future of my family as I had envisioned it - even after this was clear I had another wait til 24 weeks to be cleared of heart defects. What I guess I'm trying to say is that you'll never know until you're faced with the decision how you'll react to it. I had my eyes opened to my own feelings regarding the subject - I did feel at some points that I wish I hadn't got pregnant again (IVF) and I certainly don't feel I could go through it again. But I certainly addressed my boundaries that were acceptable for my child or anyone for that matter. If people are going to have prenatal testing in whatever shape or form they should know seriously what the consequences are and like wise not to test - if you're prepared to accept the risk then so be it.

Most importantly - Just to reiterate these tests are more than just identifying downs.

Katherinemumsnet thanks. I was really wondering what I'd said that had come across so badly.