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?

If you want a society where difference is accepted, support special needs people who are already born and alive.

Yes, theanti-choice brigade typically show not a fraction of concern for actual living children as they do fetuses. Until they do, I shall continue to see their arguments as self-serving hypocritical cant.

Agree, Springer. NIPT is a good thing but it MUST go hand in hand with accurate and balanced information.

No need for private healthcare though, our children get absolutely fantastic NHS care.

I'm two things in relation to this subject.
1/ I'm the mother of a child with DS.
2/ I'm in the Pro choice "but" camp.

1/ I found out antenatally. It was a very distressing time. I had zero knowledge of DS. Ultimately, for me, forewarned is forearmed and we had months to prepare ourselves and our families, and get accustomed to the situation. For me, the idea of finding out when I was knackered and hormonal after birth seems terrible. At a basic level, the NIPT test is just a tool, an aid which has a very relevant place in antenatal care. The problem is, there is a hell of a lot of pressure, when you get a diagnosis of foetal abnormality, from every direction, to "get rid of it and start again". This leads me to point 2/.
Choice without factual, well balanced support and education is no choice at all. Join any DS forum and ask what information people are given, how they were treated, and what their so called support network had to say, and you'll get hundreds of horror stories. Undergo antenatal testing and the first words you'll hear are "I'm sorry." closely followed by "We can book you in for a termination tomorrow".
No counselling, no support group, no contact with anyone with any kind of DS experience.
That's not informed choice. That is heavily biased manipulation. And it doesn't stop when you decide that you want to keep your child regardless. It goes on and on until delivery. "If theres an emergency during the birth, do you want us to resuscitate the baby? It's your choice?"
As a point of interest, it is legal to terminate a DS pregnancy, right u until the start of labour.
To the outsider, This documentary may seem loaded, biased, but to those of us who live with DS, its a drop in the ocean that is the attempt to redress the balance. You may feel that Sally Phillips was pushing her own agenda, that she isn't pro choice, but you try walking a mile in her shoes first.
Because, regardless of "Spectrum" or "level of function", our children are as Sally Phillips puts it "simply people. Part of the fabric of humanity."

Ask yourself a question... If you end up with a disability as you age, or suffer an illness, or accident, does your life suddenly become worthless? Measured only in terms of the cost of your upkeep? Will you be deemed a mistake because your offspring have to care for YOU? Or you need care or support from outside agencies? Because that could happen to you, or that "perfect" healthy child of yours, at ANY time.
Sally raises some important points, whether you think she put them across badly or not. What makes anyone's life any more important than anyone else's? and who gets to decide?
These are our loved ones. We don't care whether they are different or not, and unless you are one of our number, you don't have the right to feel sorry for us, or resent our decisions, and you sure as hell don't get to quantify the value of our loved ones existence, no matter how hard, or upsetting our lives look like to you.

FWIW, I don't want the NIPT test stopped, banned or cancelled. I want it fully backed up with accurate, up to date, balanced information.

Like Dylan there is a really good meme that demonstrates that but i dont know how to post memes.

Its two cartoons. On one side the pro life lobby is begging a woman not to terminate.

In the second cartoon they are saying to the child "Get a job you bum"

Well said, GirlWithAPearlNecklace

Blackcat I'm not interested in rough statistics, only real ones and with sources if possible. Especially when they're as way-out as "Most of (assume you mean have) heart defects". Actually it's around 40% and they're mostly fixable. If you would like to educate yourself about the incidence of the various medical conditions associated with Downs have a look at the Downs Syndrome Medical Interest Group site. If you're bandying about random assertions about a group in society less able to speak up for themselves and already a target of prejudice, then you very much should be fucking bothered.

I'm not lucky, I'm good. My child always comes first and his needs have never got in my way. I'm not at all unusual.

Live Down Syndrome births have been stable-ish for a long time at around 700 per year. Distribute those around schools across the country and I think we can be pretty sure your experience isn't all that extensive. If you are the sort of person who cares enough about these children to work with them, why you are so bent on generalising and misrepresenting?

A foetus is simply not the same as a living, breathing human though.

I totally agree there should be better information and it should be presented in a balanced fashion, but the coverage of this is simply trite oversimplification and hideously biased.

I've been the mother of a child with a significant learning disability for over 23 years now. Several of his mates have DS - though ds has no label for his condition, nobody knows the cause, and whatever it was could not - and still can't - be detected by antenatal testing. When DH and I are no longer breathing in and out, society will have to support him. And, to some degree, his little brother who has HFA. No test for his condition either - though I know that might change.

Regarding my older SN child - ds2 - it's possibly evened out a bit now he is in adult services - but when he was younger in many ways it was far easier to get support if you had a label. I gather that hasn't changed significantly for new parents with a developmentally disabled child.
If you have no label, you can't join a club! (for support and information and classes). I can think of 5 young adults with DS that I know well - they are all different - obvs there are some physical traits due to the DS - one has little speech; another has very clear speech; yet another has some speech - but is more cognitively impaired; one has autistic traits too. Bladdy bla. All need extra support.

Many expectant parents heave a sigh of relief when they get the all clear for Down's. But DS is only one condition - and there are several other causes of learning disability. Many are not detectable, and never will be. So society might be able to stop children with DS from being born, but they cannot eliminate all cognitive and physical disability. I don't know where I am going with this really. Just that society gets its knickers in a twist over DS, but there will still be families needing support for something else.

Wow Girlwithapearlnecklace what an amazing post. I don't have a child with DS, I do have a child with ASD. There is obviously no screening for ASD at present and, like Downs, ASD is a spectrum condition.

My DH and I could not conceive our own children. We considered adoption; however, I was put off by the fact that, as a white couple, our only chance (at that time) of adopting a young child was to accept a child with a high risk of neurodevelopmental disorder, LD or FAS. We did not feel ready to accept this so we went for donor conception. We did not test for DS (not necessary based on nuchal scan) but, based upon my entirely unexpected reaction to the idea of adopting a child with a LD, I suspect we may have considered a termination even though we desperately wanted a child. We wanted the perfect forever after.

Fate has decided that the 3rd child we have had has lots of the issues we were trying to avoid. When we first found out that he had ASD, I felt like my child had died. I often thought about how it might have been better if he had of died - at least I wouldn't have to worry about the future etc. I think I was grieving that perfect child. However, nothing had changed, I was grieving the loss of my dreams. My boy was/is still here. Doing well compared to where he was last year (even if not compared to his peers). We are still alive and happy and I can't imagine how much poorer my life and the world in general would be without him. I wouldn't want an NT version of him (even if it would make life easier).
I have always been pro-choice and I am not against this new test. However I do have a lot of solidarity with where Sally Phillips is coming from. The danger is in developing these tests without proper detailed information. Termination would probably have been my decision but it would have been the wrong one for me, even if I never knew it. How can you make a choice when all you can see/all you hear about is the negatives and understanding the positives is so hard until you are part of that life.
I would hate for the world to screen out (or almost screen out) people like my lovely boy; I understand why she might also feel desperate to prevent the same.

Topaz there have already been many cuts to social care.

HD, I know that. But it doesn't stop the need for such services.

Campaign for more information about DS, sure. But women should also be campaigning for easier, earlier and safer testing.

Wanting the first doesn't mean you should withhold the second

The majority of Down's pregnancies are already aborted. There aren't lots of children with Down's in special schools. Down's is nowhere near as common as it used to be. The 20 week scan and the 12 week scan picks up the majority of cases. Most people already opt for a abortion if they believe their child has a disablity. Sometimes healthy foetuses have been aborted by mistake.

Avoiding aminocenetus test will save lives as there is a 1% chance of miscarriage. The death of healthy foetuses is a real issue with amino testing. Surely pro lifers should be pleased that those lives will be saved.

The children I have met with Down's have all been individuals. A teen with Down's is different to a cute toddler. The teens I met were both incredibly stubborn. I don't know if stubbornness is a trait of Down's or a trait of two individuals. Neither of the two teenage girls with Down's I knew were violent.

Girlwithapearl I was going to write something, but your post hit the nail on the head. I am a mother of a dd 9 with ASD, learning difficulties. Though she has her issues, is her life worth less, or does she not deserve to be on this earth! Many of you feel that Sally Phillips was irritating, pushing her own agenda etc, at the end of the day she is a mother of a child with ds, and she wanted to change the negative perception doom and gloom, that the medical profession have of DS, so that parents are given all the facts and information surrounding Downs, so that they can make an informed decision! It was fantastic to see people with DS on that programme, and how varied it can be, and also how much they are achieving themselves. It's rather like ASD, some will be independent and able to function independently within society, some will not.

I had amnios in both pregnancies. Booked them before the Triple Test, so not even because I was "high risk".

The fetus is the seed of a baby, not a baby. Either you agree with me (and the laws) on this and you are fine with abortion for any reason, or you don't and you should not be OK with abortion for any reason.

No amount of "balanced information" would have done any difference to our decision to abort a fetus with a genetic abnormality.

As it turns out, a genetic disorder has now appeared in our extended family, something that was not tested for in my amnios. The prognosis for the child affected is dark and sobering. The weeks while we waited for DNA results to see if my DC are affected were the worst in my life. My family is not yet done grieving and crying for this child.

Thankfully I will not be having any more children, but you can bet that all my younger female relatives will be going straight to amino and demanding the specific test for this disorder during their pregnancies.

Pregnancy screening tests should be more accurate and they should cover all known genetic conditions. I would have aborted for DS but there are worse disorders out there that slip under the radar.

Yes there seems to be a decline of Ds, how long before everyone like Iceland opts to terminate a Downs pregnancy. How long before there are prenatal tests for neurodevelopmental disorders such as ASD. At present there is none.

coteE though no information would have changed your mind, it might another family, they might reading all the facts and talking to families who have a child with Ds choose to go ahead with the pregnancy. Tgere shoukd be balanced information out there.

But "balanced information" is really only information specific to individual families. It's easier to look out to the community and society as a whole and insist that diversity is advantageous - which I agree with, actually - when you're not stuck in the trenches of parenting a child with a disability. It's easier for SP, with her financial resources, nanny, flexible job and child without significant co morbidities like autism and heart issues to loftily talk about "choices".

Choices doesn't mean withholding tests from women that make testing easier and safer.

"is her life worth less, or does she not deserve to be on this earth"

Does any aborted fetus not "deserve" to be on this Earth?

I am pro choice.
We all parent differently and that should be respected, therefore we should respect the choices made about having a child.
Some people myself included may feel they couldn't cope with a disabled child, should they be made to bring a child into the world that they feel would be to much strain? Also they test also tests for other syndromes, and after seeing a friend pregnant and not knowing if it would survive as possibly had Edwards syndrome, then I am all for more accurate diagnosis.

I have had the tripple test, I couldn't go through with abortion it's just not in me to do so.
But I would of liked to be prepared if the baby had any disabilities that could be identified before birth.
I do know how hard it is to have children with sen as I have an autistic child.
But I would never judge any parent for making a different choice to myself.

cote I am seeing dd now as she is growing from a baby into the child she is now I could not see our life without her. If we found out through pre natal testing that she has ASD, I don't know we would have to look at all the information and Mabey talk to some families of those with ASD, who knows. The worrying thing is in the future, does choice mean and the developing technology for prenatal testing mean, We are heading towards Eugenics, the eradication of disability from society so we create this Utopian and perfect world. How then can we have disability acceptance on one hand, where embryos with such disabilities are being terminated.