A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

I have to say the whole thing sat very uneasily with me - I can appreciate she has an impassioned viewpoint, but her life is just not the reality for many, and her positive outcome does not give her the right to dictate the choice of others.

I have a friend whose daughter has Down's. She's 6, and she's awesome. Her parents opted for the testing, and chose to proceed, and had time to adjust to the knowledge their child would have additional needs. I am currently 22 weeks pg and also opted for screening. Termination would not have been an automatic choice but I wanted to be as informed as I could be about my baby.

I think what the whole thing reminded me of is when my dad had terminal cancer - you would tell people, and be very explicit that it was terminal, and 90% of people would insist on spinning you a tale of their granny's second cousin who was miraculously cured by drinking bacon fat, or the power of prayer, or chanting. It may be their viewpoint but it's not my reality or reality for many people, so it's a viewpoint better kept to themselves.

Hadley Freeman in the Guardian making points that many posters on this thread have made: Philips's privileged circumstances, her Christian beliefs, bias in the programme, the primacy of the woman's choice over any other consideration.

Yet, I still feel worried about the underlying attitudes to disability. As Pagwatch said many posts ago, there's no explanation that has yet been given of why you can terminate a foetus/baby with Downs right up to birth, so much later than a 'normal' one, that doesn't make me feel uncomfortable.

I still feel worried by the fact that more weight is given to the woman's wishes -whether she wants to be responsible for a child with a disability - than the value of the child's life to him or herself. Both those things are vitally important. Are we really sure we are giving them the right weight in the decision?

I'm still unhappy that having a child with a disability is seen as a tragedy that should be avoided if at all possible. Who can tell what will happen to the children we bear? There are all sorts of reasons why we may have to end up caring for them our whole lives. Does that mean their and our lives have been wasted?

I don't think our society values caring very much, and I am worried by the attitudes to the disabled that underlie so much of this debate. I had tests myself when I was pregnant, though after great heart searching, and I don't think I would make that decision now. I have had a termination in the past. I really am not anti-abortion. But I don't think choice is the be-all and end-all of the debate, and that other factors need to be weighed against it, even if in the end choice carries the greatest weight.

The minute someone say "1 am pro choice but....." they cease to be pro choice.

But this is not simply a debate regarding 'pro-choice' - it is much more complex than that.

With the abortion laws, as they stand, women do not have free choice and the laws are different for Down's babies with Down's babies being allowed to be aborted up to full term. This difference only occurs in the case for disabilities. No one has offered a medical explanation for this on this thread. I find the idea abhorrent if there is no medical explanation such as cases where there is a potentially fatal risk to the mother.

With IVF, again, it is deemed acceptable to choose embryos on the basis of having no chromosomal disorders but not for any other distinguishing features, such as sex or eye colour. In the very near future, people will potentially be able to detect other conditions and we, possibly personally and as a society, will be faced with more choices.

So this debate is partly about increased knowledge giving increased responsibility for the choices we make. It is also about how supportive society is towards people with disabilities affecting the choices we make.

(The exception for late abortions being only for made due to disabilities, I stated to the best of my knowledge. Thinking about it, I maybe wrong on that, I don't know.)

The laws are not different for Down's Syndrome. They are different for disabilities.

The earlier and more accurate the testing, the less the need for late abortions.

Bertrand that is bollocks. Why do we have a cut off for termination then? Ethics have to come in to the debate - I am definitely pro choice and would probably terminate for a chromosomal abnormality but absolutely think late abortion is unethical. Don't dare tell me I'm pro life.

And actually I had a termination when I was 21 with no regrets.

The reason why late term is available is because with other disabilities where the baby will die soon after birth or during labour sometimes parents want their baby to be born peacefully and to never feel pain. It's not all about Down's Syndrome. I think most of the time the reason is not the chromosomal abnormality but the symptoms that come along with it. My DD had 22q deletion. She also had HRHS, an extremely rare heart defect that would have required immediate open heart surgery but my DD had holes in her heart and some of her arteries and vessels just weren't there. Best case she had a heart transplant. I chose to not put my baby through that pain and suffering. Sometimes death is more gentle no matter the gestation.

Also from first sign to formal diagnosis was almost 8 weeks in my case and that is a common time frame. Things don't happen instantly. If the first signs are only picked up at the 20 week scan what are you supposed to do?

Perhaps the laws for late abortion in the case of disability up to and including fatal foetal abnormality is a tacit acknowledgment of the fact that not every Northern Irish woman who wants a termination has the money and time immediately available to travel to England and pay for it and they need a bit of time to scrape up the cash. Also gives extra time for girls and women in abusive situations such as incest (which one would expect to lead to a higher rate of foetal abnormality though not a higher rate of DS) to escape their situation.
I think the number of late term abortions is quite small. I would like to know some demographic data for these...what situations are people in that they abort past 24 weeks for example?

I'm so sorry gruffalo. And I totally agree with what you have said for conditions that are incompatible with life or guarantee great suffering post birth. I'm talking about DS.

These threads always lead to people talking out of their arse when they have no idea of the time line of processes and tests. You will never understand until you've been through something so fucking horrendous.

But DS also goes very often hand in hand with these heart problems. No matter what no parent chooses a late term abortion lightly, they don't do it offhand, they are choosing what they think is the path of least suffering for their child.

Bertrand I meant in terms of Down's being a disability, so the laws are different between a baby with Down's being aborted late compared to a child with no chromosomal disorders detected.

It is true the new test can be carried out earlier, which is a good thing. I wonder then maybe the law regarding late abortion due to disabilities should be changed or are there other reasons for this aspect of the law to remain as it is?

As, I said earlier, Britain's laws are not entirely 'pro-choice' as we already have conditions. But for me what this debate involves is more to due with society's attitudes and support for people with disabilities, the reasons behind the choices that are made and allowed to be made by mothers (and doctors) than simply being 'pro-choice' or not.

X post power and thank you for addressing my question.

Thanks gruffalo also.

As aN aside, I also knew someone who, in the 70s, was persuaded by doctors to have a late abortion, due to her own mental illnesses. She regretted that decision in later life and it was a deeply traumatic experience.

So the ethics surrounding the advice pregnant women receive really does need to be discussed.

Just as a point of information, only 1% of abortions in the U.K. are post 20 weeks.

Faster and more accurate testing would bring this down even lower. . Who wouldn't want that to happen?

Which is exactly what I said gruffalo . But millions of people with DS are born relatively healthy too

"She regretted that decision in later life and it was a deeply traumatic experience."

The problem is that pregnancy, birth and the presence of a child may have been equally, if not more, traumatic.

gruffalo thank you for sharing your story and so sorry you went through this. It took 5 weeks from screening to (non) diagnosis for me - and anything which speeds this up is a positive.

everyone will have a different ethical position, and their theoretical ethics may not reflect what they'd do when facing a real life scenario. Hadley and others on this thread have pointed to Sally's perceived wealth and privilege - it wasn't immediately apparent to me that she's particularly wealthy. Either way, 90% of diagnosed Down Syndrome fetuses are aborted. I would be very surprised if 90% of women chosing to abort are financially or logistically unable to care for a DS child. Many if not most will simply not want that for their child like the woman interviewed who had terminated due to DS. Thing is - that is their child. It's already happened.

But then at 8 weeks they wil not be able to detect associated health problems, only chromosomal abnormalities? So people could potentially be aborting with less information..This issue is certainly very thorny.

When I was pregnant, I opted out of having the initial blood tests, although abnormalities could have been picked up at the scan. Rightly, or wrongly I decided I would not abort anyway at that stage based on risk. I did not want the stress of worrying over possibilities that were not certain. But this was a very much planned pregnancy and had I been in very different circumstances or was being faced with a certain knowledge my unborn baby would suffer if allowed to live, I don't know what I would have done.

Bertrand she had to give birth anyway and saw her baby, as far as I know. (My DM knows more about this but that is what she told me).

No matter what no parent chooses a late term abortion lightly, they don't do it offhand, they are choosing what they think is the path of least suffering for their child.
I'm just repeating this now. It goes for early, middle and late abortion. No matter what, people are just trying to do what is right for their families. The decision is no one's business but that families.