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

301 replies

PlayOnWurtz · 05/10/2016 18:53

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?

OP posts:
JohnnyMcGrathSaysFuckOff · 06/10/2016 14:07

It is deeply ironic to refer to people with DS as a 'race', given that 'race' in fact is simply a sociological construct with no biological basis - whereas DS is caused across all groups of humans by a spontaneous genetic (biological) mutation.

It's pretty much the opposite.

It also obscures the real history of racism and is pretty disingenuous imo. People with DS have never been colonised, enslaved en masse, etc.

This is also not eugenics, which is a specific social movement advocating an 'ideal' or 'master' race, often associated with white supremacism and middle-class values. That is a bit like finding a govt who share some policies of the 1930s German govt and saying 'Oh so they are also Nazis'.

The people on the anti-NIPT side of this debate keep saying they want better info out there - which I'd completely support. But many of their arguments involve conflating things which are very different, like race and disability.

I feel that behind many of those posts there is an agenda - an anti-choice agenda.

minipie · 06/10/2016 14:08

Really it can be done at 10 weeks. Results are available in a few days (it used to be 2 weeks).

ReallyTired · 06/10/2016 14:27

"Really it can be done at 10 weeks. Results are available in a few days (it used to be 2 weeks)"

It's a no brainer not to offer it to all pregnant women. If women want to consider termination then they have more time on their side. They have more time to find out information about Down's and make an informed decision. There isn't so much pressure about time limits or having to make a decision when the pregnant woman has felt movement. If the abortion is carried out early enough then it will be a simpler proceedure.

TwentyCups · 06/10/2016 14:35

You are either pro choice or you aren't.

Some people know they won't be able to raise a child with downs. That is the woman's choice alone.

Some women, when discovering they are pregnant with twins/triplets choose to abort one or two of the foetuses, because they know they can't cope with more than one baby. That might be uncomfortable for people to hear but it does happen. If you are pro choice there are no buts.

ReallyTired · 06/10/2016 16:30

"You are either pro choice or you aren't. "

I don't think that life is so black and white. It's why we have laws and ethics committees.

Is OK to abort because the foetus is a girl? What about aborting a foetus because it's destined to be a ginger? Why is aborting a foetus at 10 weeks because it's a girl morally unacceptable. Surely pro choice taken to an extreme means it's ok for parents to abort girls.

The reality is that most of us are not 100% anti abortion for 100% pro abortion. Some people might be fine about an abortion at 10 weeks but feel morally replussed by the idea of abortion on demand up to term.

AutumnMadness · 06/10/2016 16:43

"Is OK to abort because the foetus is a girl?" Yes, it is, that's what being pro-choice means.

If we do not want girl fetuses to be aborted, we must strive to make our societies less sexist as opposed to placing conditions on a woman's right to abortion. Women do not make their decisions independently from social norms and material conditions of life. So it is these norms and conditions we should seek to change as opposed to placing the burden of upholding morality on the shoulders of individual women.

Idliketobeabutterfly · 06/10/2016 16:45

Sadly I think some people would abort but equally some may and do with current testing too.

HelenaDove · 06/10/2016 17:08

Some experiences on this recent thread from the Chat board.

www.mumsnet.com/Talk/_chat/2738321-Experiences-as-the-sibling-of-a-disabled-adult?pg=1

HelenaDove · 06/10/2016 17:25

The above link is Hadley Freeman for the Guardian.

sleepyowl12 · 06/10/2016 17:26

I thought it was an interesting programme. I I didn't get the message that SP wanted to ban the new testing, 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 Downs so women could make a more

RufusTheSpartacusReindeer · 06/10/2016 17:42

I have not read the whole thread

18 years ago while pregnant with ds1 i had the blood test which showed that my chance of having a child with ds was slightly higher

I refused the amnio as i was concerned about miscarraige.

I asked the doctor if i could have the amnio at 30+ weeks and they said "why? Its too late for an abortion"

I didnt want an abortion, i just wanted to know so i could prepare, read books or join a relevant baby group and tell relatives

I would have had this test and not aborted the baby (tried too fucking long to get him not out of any 'moral' reason)

But i think its fairly obvious that the abortion rate will go up

TwentyCups · 06/10/2016 17:46

I think it's ok to abort a baby for any reason at all so long as it is the woman's choice.
What's the alternative? A woman bringing a child into the world that is unwanted. It doesn't matter why it is unwanted, that would be the end result.
That is what pro choice means to me.

Mama1974 · 06/10/2016 20:44

It is 'choice' that is the poisened chalice. If you wouldn't have the choice and society wouldn't value a fashionable level of physical appearance and ability above the experience of life, if nature deems the life viable why put yourself in a position to judge on something that is beyond rationality?
She made this point very clear when she admitted if she would have been presented with that choice she may have decided to terminate. Her point was that by not having had that choice she allowed herself to gain what she would have otherwise lost. It is such a coplex moral subject, and there is no right or wrong, why make a problem that needs to be corrected?

WantageWife · 06/10/2016 20:47

Hello! Late in the game on this one, but wanted to add my little bit.
I have been pregnant 4 times, 3 pregnancies have resulted in big bouncing healthy babies.

Each pregnancy was similar in that I was patronised when it came to the Down's screening. I declined, the midwife made throw away comments about "how would I cope", about the "burden" of a disabled child. I ended up doing them because they were non-invasive and posed no risk to my baby. My personal "choice" is that I would decline invasive testing due to the risk of miscarriage (personal choice, and due to the fact that I had suffered a miscarriage and it was awful).

I have no idea why people are so afraid of Down's syndrome, I grew up in a community where I was exposed to the normality of life with a learning difficulty so I guess that helped. My personal choice was to see any pregnancy I was blessed to have through to the end, and love the child I made. I realise now that my attitude is in the minority and that comment is not intended to offend anyone who has made different choices, each to their own.

Sally's documentary really struck a chord with me. I was NEVER given unbiased information during my pregnancies. I was in fact on the receiving end of some pretty appalling treatment.

My second pregnancy ended up flagging a "high risk" result. I got a phone call on a Tuesday, just as I was giving my eldest daughter her tea. It went something like this:
"I am so sorry to have to tell you, your results show you are at high risk of Down's syndrome, we have booked you in for an amnio on Thursday at 9am"
My response was "no thank you"
To which I was then treated appallingly, with repeated phone calls, patronising comments, cajoling, almost bullying trying to get me to attend the amnio appointment. I later found out that termination slots are booked prior to delivering the results of an amnio if they do indeed show the baby has Down's syndrome.
The thing is, I already "knew" (mothers intuition) that my baby had Down's syndrome and I was fine with it.

The "I'm so sorry" and the "high risk" are both incredibly negatively charged statements. Society, the NHS etc all want everyone to believe that Down's syndrome is awful... it's really not.

After my second daughter was born I asked the midwife if she thought she had Down's syndrome (it was pretty obvious!) and she said "yes, I will call a paediatrician"
Long story short, I was put in a room on the bereavement floor, even though I requested to be put on the ward. they literally made it feel like I had had the worst news EVER, even though she was 8lbs 5oz and completely healthy, breastfeeding like a dream and I was ready to go home!
She's 6 now, and I am on my own parenting my 3 daughters 80% of the time as I have no family to help and my husband works away a lot. I am not in a position of privilege, my daughter has a moderate learning difficulty... She is just a little girl who learns a little differently and slower than the average neurotypical child.

I find it weird how people are blasting Sally for allowing Olly to be filmed. Olly is the norm, not the exception. Down's syndrome is not an illness and it's not a spectrum disorder... I find it remarkable that people still think that - including some medics!! Staggering.

There is as much variety in ability amongst children who have Down's syndrome as there is the neurotypical population. Kids with Down's syndrome get other illnesses too... The problem is that Down's syndrome is the first thing people see - its written all over their beautiful faces.
I know children who have all manner of other diagnosis - not because they have Down's syndrome, but because they are kids.

Sally's documentary wasn't about not allowing the screening, its about asking the medics to get up to speed and offer more balanced information and to put a stop to the conveyor belt that assumes everyone wants to terminate. Not everyone does and that is also a "choice". It definitely feels like our choice, those that want to continue the pregnancies, is actually often the harder one to fight!

TigerLily666 · 06/10/2016 21:02

As someone who has had multiple miscarriages (one of which was because my baby had Edwards syndrome), I paid to have the Harmony test done privately in a later pregnancy.

The thought of waiting for an amnio and the associated risks of miscarriage were just horrendous, and I was so relieved there was a non invasive test that could give such good predictions of risk. I was lucky as I could afford to go private.

As far as I am concerned this test replaces the existing tests and gives people choice without all the risks associated with existing invasive testing.

Unless you have been there, don't make judgements on people's decisions. Everyone's choice is their own.

StatisticallyChallenged · 06/10/2016 21:08

Everyone's choice is their own

^this. I believe in a woman's right to choose and I don't think we should try to limit her access to information which would help her to make the right choice for her (and her family if relevant.) If, for that woman, information on whether the foetus has a particular syndrome is important for her then it should be made available in the easiest way possible.

Thefishewife · 06/10/2016 21:09

The issue I have with it the test simply says your child has downs like every disabilty

It's a spectrum

Your child could be very very server or could be mild like the actress in Glee club

But we just have to be real many people simply don't want disabled child however mild it's very sad really the joy disabled children can bring

jessica29054 · 06/10/2016 21:11

Non disabled children can bring joy as well.

crashdoll · 06/10/2016 21:21

I'm totally pro choice. A woman's body is her own; she can terminate for any reason she want. That does not excuse the grim attitudes on this threads from some people. It would do those people good to remember that MN has always been visited by a high number of parents who have children with additional needs. Imagine hearing things like "your child might be a sex pest and cost the state £100k"? Shock Imagine if that you were your child, who is already here....living on the planet. You can be pro choice without denigrating disabled, vulnerable people. That makes you just as bad as the anti choice people.

WantageWife · 06/10/2016 21:27

crashdoll

Crikey, lucky I didn't see those posts, but thank you for your comment!

Shame there isn't a prenatal test for narrow minded bigotry and sheer stupidity eh?!

Effic · 06/10/2016 21:29

Fish - But it's not the disability that brings the joy!! It's the child!! I don't understand why people can't separate this! If scientists announced tomorrow that there was a pill that could be taken by all people with downs (or any other disability) and it would remove the down genetic abnormality (or other disability) - would we all be campaigning that people with that condition shouldn't take it? Of course we wouldn't because we'd all want to see the people we know and love free from any condition that causes pain/difficulties in their lives. Any existing child with downs isn't special or precious because they have downs - the child is special and precious because of who they are. Like all children. The genetic condition is irrelevant to their preciousness.

Hygellig · 06/10/2016 21:32

I haven't seen any posts that I thought were bigoted or disablist - just some people describing their first-hand experience of adults with Down syndrome and other intellectual disabilities.

WantageWife · 06/10/2016 21:33

Effic

Your post almost made me cry - and I am not a Crier so that is a big thing for me!

I wouldn't remove my girls Down's syndrome from her. She doesn't suffer from having Down's syndrome, its not an illness or an affliction its who she is. Your comment drove home to me how little people understand about Down's syndrome. I want to weep.

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