To think you don't see many people with Down's syndrome anymore?

[Neonoen]

When I was a school there was a boy with downs syndome in my class. At secondary there was the first boy and then another one too.

I worked with a man with Downs syndrome at my first job (he taught me how to use the photocopier the first day after I wasted a whole reem of paper ). At the same time there was a woman who travelled on the same bus as me with Down syndrome and another who worked in McDonald's.

Yesterday on the TV they were interviewing that man who has the lead role in a new film (he has downs). DS asked why he spoke like that, I explained and then realised none of my children know what Down's syndrome is or have ever encountered anybody with it. There's no children with downs in their schools, no families with any members who have downs and no businesses that I can think of who employ anybody locally with Down's syndrome.

Other than the SN session at the local pool, I can't remember when I last encountered anybody with downs.

Is it just me? Is it a result of advanced ante natal testing?

In fact thinking of it I'm surprised at the lack of any experience my DC have of people with disabilities.

I really don't want to offend with this and hope I've used the correct terminology.

"No one should pressured to terminate when they don't want to and no one should be pressured to carry a pregnancy they don t want to for any reason at all."

Yes. So we can cut out all the 'horrified' and 'less than thrilled' judgements about other women's health care decisions then, feline.

IME a balanced view is rarely given (I am a member of a disability action group) It is usually worst case scenario, and outdated at that. In the case of DS for example, I would want facts and figures such as "53% of children with DS go to mainstream school*" rather than a blanket "severely disabled" label being used. I would also expect the figures to be broken down to includes stats for children with DS alone and other associated health issues. It is vital in order to make an informed decision.

Yes. So we can cut out all the 'horrified' and 'less than thrilled' judgements about other women's health care decisions then, feline.

Oh, FFS. I thought I'd been pretty clear in what I'd been saying - apparently I wasn't clear enough for some.

I don't think that's the role of pre natal health care tbh, franincisco but I do agree that they should be signposting to the range of information is available (which is increasing all the time and is more accessible via the internet than for example a generation ago).

And if the 'informed decision'then leads to a woman choosing termination then that's her business abs no one else's.

After my amino I would have aborted a child with ds in a heartbeat and if that offends those who have children with downs then sorry but that would be kids choice just as much as their choice to keep.
All informed choices a woman makes about her pregnancy are right for her.

As for mumsnetters PM a woman who had to suffer a late term abortion then shame shame shame on them.

Why not though? Foetal medicine (who you are signposted to once an anomaly is detected) should be privy to this info, who then surely should pass it on to you? This is the basis of informed decision making surely? I am sure most people who opt for termination have not taken that decision lightly, they have clung on to the words of whoever has told them of the anomaly. You shouldn't have to go home and sift through 30 million internet sites.

Just to add, many associations provide literature to maternity hospitals that in the event of a diagnosis will provide them with some info and a tel number, but not all centres comply with this. I know SHINE and CLAPA for example have reported back about this.

And if the 'informed decision'then leads to a woman choosing termination then that's her business abs no one else's.

Absolutely.

feline you were very clear when you said "It's horrific and the law should be changed - but I wonder whether any doctor would actually be prepared to do this" in response to a poster saying that the Abortion Act would have legally permitted her to terminate a pregnancy of a foetus diagnosed with a disability post 24 weeks.

This is at complete odds with the point that mice made about women having the right to bodily autonomy that you then say that you're in complete agreement with.

So, overall you haven't been clear at all, although I'm glad that you seem to be moderating your judgemental stance.

Foetal medicine is a tiny speciality fran. Not all hospitals have a foetal medicine department and they certainly don't have staff with up-to-date expertise in the possible outcomes for all pre natally diagnosed conditions.

They should signpost though. Then parents can consult a range of sources.

Yes, I agree that signposting isn't done properly (if at all) in foetal medicine units and that this is what should be improved.

My stance is and has always been that DS alone isn't a reason for a late termination. I hope that's clear enough for you.

So where does bodily autonomy for individual women and making informed decisions based on the information available come into that?

What if a woman makes the choice to terminate a pregnancy carrying a foetus with Ds, after 24 weeks?

Should she then lose her bodily autonomy because you don't agree with this?

Is is okay to terminate a pregnancy with only Ds before 24 weeks in your eyes?

It's clear that this is very important to you and that you feel very strongly about it, but the views that you express are very contradictory.

I have no problem with anyone terminating any pregnancy before 24 weeks, if they are unhappy being pregnant for whatever reason. I don't believe DS on its own is an acceptable reason to terminate a pregnancy in the third trimester. I wouldn't dream of condemning a mother for having a late termination where the baby is unlikely to survive or will be so ill or disabled that suffering is inevitable. I don't see any contradiction in this.

The problem is that until birth (or indeed a while after birth) you don't know the extent of or presence of any structural problems etc. You can't look at a foetus in utero and make an assessment of how severely affected they are with any accuracy. Some structural heart defects yes, but generally no. So you can't really make that assessment until after birth.

I think (and please correct me if I'm wrong, I'm not a medical doctor) that ds of any etiology is considered a reason to abort after 24 weeks?
Felines, that's your stance and I respect that. This is my point - you think that and thus good care for you looks like supporting your choice, attempting to asses any further care the baby would need after birth (immediate cardiac support for example.) basically, how best to support you through your pregnancy and care for the child at/after birth.
For others, termination may be the right choice, and for them good care looks like making sure they have made a fully informed choice then supporting them physically and emotionally through the termination.

The medical care should have no opinion as it were. No pressure either way. Just informed consent then sensitive support of the choice.

Less than 0.1% of terminations are carried out after 24 weeks. It is very rare.

Yes, the UK law does currently permit termination of pregnancy of a foetus diagnosed with Ds post 24 weeks.

And yes, there is no way of knowing pre natally exactly the extent of disabilities that a foetus with Ds will have once they are born.

That's the medical context in which individual women make their decision.

I'm afraid that I do see a contradiction between saying that women should have bodily autonomy and not be forced to continue a pregnancy they don't want to at any stage and that because you believe that a diagnosis of Ds isn't sufficient reason to terminate after 24 weeks, other women shouldn't be allowed to.

That's fair enough, mice. I think the reason this discussion can't progress is that posters can't agree on whether the intellectual impairment that comes with DS is a severe enough disability to warrant late termination.

My DD was diagnosed postnatally, so I was never faced with these difficult decisions, but based on people I know who had an antenatal diagnosis, hospitals were able to give them a good idea about heart and bowel defects from fairly early on, certainly before 24 weeks.

I'm afraid that I do see a contradiction between saying that women should have bodily autonomy and not be forced to continue a pregnancy they don't want to at any stage and that because you believe that a diagnosis of Ds isn't sufficient reason to terminate after 24 weeks, other women shouldn't be allowed to.

That's not what I said. You might want to reread.

Anyway, I'm off to collect my DD from nursery. She's probably just sitting, drooling, in a corner. Or, more likely, doing some drawing, looking at books or giving a rowdy rendition of The Wheels on the Bus.

feline it's not about a lack of agreement about the extent of intellectual or any other type of impairment associated with Ds.

The issue is about individual women making their own choices, based on the information available to them and their own circumstances etc.

Pre natal screening isn't able to predict the life chances of a particular foetus - there are so many socioeconomic variables at play aside from anything else.

Those are the statements that you made feline. You supported mice's views about bodily autonomy and making decisions based on informed choice, having already said that terminations for Ds post 24 weeks are horrific and the law should be changed.

'Anyway, I'm off to collect my DD from nursery. She's probably just sitting, drooling, in a corner'

Ffs you are just being goady. A person's choice to terminate their child has no reflection on your daughter.

I don't think feline was trying to be goady. I think that posters (mainly me at the moment) advocating that women should have the right to terminate a pregnancy specifically of a baby with Ds post 24 weeks is very hurtful, because it feels like we (I'm) saying that her dd is somehow a lesser person.

That isn't what I'm saying, it absolutely isn't, but it must be incredibly painful for someone with a child with Ds to read others posting about late termination for this condition and this condition alone.

feline

I never see any, I'm 31 and I never saw any at school, college, uni or various jobs. I have a toddler so not been exposed to vast amounts of kids yet but never see any at the park, shops etc. I used to volunteer at a centre teaching disabled people how to use computers and never came across anyone with it.

When I talk about terminating a DS pregnancy at or near full term as being horrific, I'm thinking of cases in which the baby seems otherwise healthy. I've no idea whether this actually happens in practice but the fact that's it's legal horrifies me.

Nothingmore, I think it is unlikely that DS pregnancy would be terminated at or near term. My understanding is that sometimes there is a delay in getting amniocentisis, followed by a delay in getting the result, then a wait for a place in hospital, which may take a woman past the 24 week mark. This means that some terminations are likely to take place from 24 to 26 weeks.