Why is it that people are so obsessed with testing for Downs syndrome, when there are so many other disabilities which cannot be tested for, that are far, far worse?

[wannaBe]

It baffles me.

When we fall pregnant we are offered tests, and scans, most, although not all of which relate to the detection of Downs Syndrome.

At 12 weeks we are offered a nuchal fold scan to determine the likelyhood of the baby having downs, and women over 35 are routinely offered anmio to detect whether the baby has downs.

92% of pregnancies where Downs is detected are terminated .

And yet there are lots of other disabilities, such as cerebral palsy, autism, other disabilities which cause learning difficulties, which cannot be detected in utero, but which can be much, much worse than downs.

So what is it about Downs that is so scary?

Or would people have far more stressful pregnancies if all disabilities could be tested for, and would they feel that they had to be sure their baby would be perfect?

I think there are some very patronising and offensive posts here e.g. about opting for a termination because you just don't understand or are frightened of Downs etc.

I happen to know a lot about Downs and did a fair amount of research about all sorts of conditions which are testable and those that aren't. It was BECAUSE of my knowledge and awareness that I made an informed decision to have all tests available to me (went private to have nuchal fold test cos it wasn't offered routinely in my area).

Yes, if I had had a disabled child or one of my children becomes disabled I would/ continue to love her but that doesn't mean I wouldn't have chosen to terminate a pregnancy if I had been told the child would have had a severe disability which would have affected his or her quality of life and life expectancy.

You know what this is MY BODY and MY CHOICE.

If you don't want that choice that's fine but don't argue that other women shouldn't have that sort of information and choices.

Also, even if you choose to continue with a pregnancy where you know the child will have Downs etc why wouldn't you want to be fully prepared and informed about how best to support and care for that child?

"Your thread title question is like asking "Why do people do smear tests when there are so many other organs that can develop cancer?"" you may not be saying that a baby with downs is like having cancer but it is a comparison none the less. But here is the difference:

If I develop cancer then I might die if it was not treated. The odds of that are pretty high I reckon.

But if I had a baby with downs then my life would take a different path, and perhaps, just maybe, I might gain better life experiences because of that baby. But I wouldn't die.

I think the comparison is pretty offensive tbh.

Reallytired once they're here though (which is the case for most people- child first then they find out about the disability) that's not an issue as each child in a family has 'equal' rights. All the research shows that having a disabled sibling is generally a positive experience. At the surfing event I went to this weekend one of the workers was talking about families and how positive it is for siblings to have a disabled sibling. Of course that assumes a certain level of norma life can continue (and the reason why events such as the surfing are so important- can't tell you how wonderful it was not to be the minority on the beach- and the atmosphere was great).

The burden thing is interesting. Thinking about it- the friends who have remained with me through all this are the ones who see ds1 as a person full stop. They recognise the challenges he poses, but don't see that as altering his value so to speak. The one's who see him as something different, something burdensome post diagnosis have disappeared/been dropped.

i think if anything this thread shows how the biggest disability of all is attitude.

my SN child a bigger burden than a 'normal' one? tell that to my pal who just had to drop her entire life here to go back to another country because of her son's heroin addiction. or take my second cousin, whose been on drugs since she was 15 (she's 37 now and a single mum - her parents are bringing up her son), and was only recenly released from rehab for meth addiction.

drugs worry me more than anything. I've seen them destroy lives.

Dd has two disabled siblings and hero-worships them both. I doubt very much that when she is older she will have considered her life to have been wrecked.

"It is simply them saying 'For me, at this time, in this life, this isn't the right choice'.". But the issue I have with that statement is that, up until the point the disability is diagnosed, this might be a very wanted and planned pregnancy. But when it turns out that the baby isn't all you hoped for it's terminated.

That's a far different senario to a woman who unexpectedly finds herself pregnant and doesn't feel she is ready for a baby.

Surely if you are ready to have children, and you plan to have children, it should come with conditions?

shouldn't come with conditions ..

'"I do think if people cannot cope with a baby with sn they should not have children"'

I think that's incredibly offensive. There are many parents who feel as though they're not coping with children who DON'T have sn either permanently, temporarily or occasionally.

Parenting is hard. Parenting a child with sn is incredibly hard. There are lots of people who think they'll be able to cope and can't. And lots who know they won't cope.

There are lots of parents who have children with disabilitites/ SN who even though they love them wish that they'd been informed and had the option of termination when they were pregnant.

I didn't want to have to cope with a child with severe disabilities and what's more I didn't want to have a child who would have to cope with their own disabilities. My choice.

You have to respect individual's choices and rights to choose.

"There are lots of parents who have children with disabilitites/ SN who even though they love them wish that they'd been informed and had the option of termination when they were pregnant."

Where? I've never met anyone except Julia Hollander. But she really does seem to be a case of disability not fitting the lifestyle. There will be a few others, but I don't believe there are 'many'. I would say that was very rare (and my son attends an SLD/PMLD school).

'You have to respect individual's choices and rights to choose. '

I'm under absolutely no obligation to respect anyone's 'choice' when they see people like my child as a burden or a cancer or something that's not to be 'coped' with.

I find opinions that people with DS's lives are not worth living therefore terminate them just as offensive, FWIW.

I'm another one with a disabled dd, who is in no way a burden. and my life has not been wrecked, and dd2 does not have an awful life either (NT so far).

dd1 was a much longed for baby, and she is much loved little girl now. she loves life, and has many interests and abilities - maybe not the "standard" interests and abilities, but they are there nonetheless.

My only burden in life is other people assuming I have an awful life. And other people pitying me because my daughter is disabled. She is a lovely bundle of fun and energy, and probably one of the nicest children I have ever come across. she has no concept of being mean or cruel. She regularly gives up even her most treasured possessions for dd2.

dd1 is a person, inher own right, and thankfully most of my friends think so too. Although I haven't heard form one close friend for ages now (must be over 2 years) - ever since i told her I thought dd1 was autisitc. I guess she couldn't cope. which is funny, as she adored dd1 before that

the burden, such as it is, comes with the rest of society treating her as though she is worthless (I am currently fighting to get her into school. She would, if NT have started 2 weeks ago. Because she is disabled, she has no place. That is a problem not of my, or her making, but of ridiculous system that has overlooked her needs. because, presumably, she doesn't count.)

What a fascinating thread. I'm at the termination statistic of 92%. I had my NT scan today, and although I was relieved tht the measurement was only 1.7, I immediately began thinking about the (I think it's something like) 25% of children born with Down's that isn't detected. You can't 'win'. I lost my first baby to mc at 11 weeks in March, and although it's hard to know what you would do in the situation, I frankly don't think I'd have had an amnio even if the risk of Down's had been high (and I don't just mean the 1/250 that is considered 'high', as those sound like pretty good odds to me).

But nobody is suggesting that all children with Downs etc should be terminated or suggesting that they are/ considered to be a burden to everyone. Just because YOU don't feel that way about your child doesn't mean that other paretns wouldn't.

Parents should be able to make a choice about what's right for them and their families.

Personally I don't really care what people do with their own children/bodies. Their choice. But I'm always staggered when they feel the need to tell me they would terminate a child like mine. People. It doesn't need to be said.

"Parenting is hard. Parenting a child with sn is incredibly hard"

actually, i don't find parenting dd1 any harder than parenting dd2. different, yes. Particualrly harder? no.

In fact, so far, dd2 has given me far more of a run around than dd1 ever did.

I think standard ante natal care throws you down a pathway of testing so that you have to stop, think outside the box and decline testing rather than make a true active decision to have the tests on offer.

The standard care pathway also has a huge bearing on why so many people terminate for downs.

I refused many of the ante natal tests and this was difficult for me to do. If I had the confidence I have now I would have refused ultrasound as well.

I was always in love with my unborn daughter and could not have thought of a termination for something like downs. And I am not coming from a radical "pro-life" perspective - I would not judge that anyone should continue a pregnancy they did not want. But I think that the UK ante natal care model is the direct cause of the high number of downs terminations.

plenty of folks on this very thread are suggesting just that, fivecandles.

I'm sorry to have offended you, although I thought it was quite clear that I wasn't comparing DS to cancer but only pointing out people (the same ones thread title asks about) will try to avoid a major disability in their babies if at all possible.

I do understand that emotions ride high in a subject like this and should not have offered to consider it from a purely intellectual viewpoint.

'generally the child's quality of life is just fine'

riven I don't know what child you're talking about here.

I'm talking about children whose quality of life and life expectancy would be reduced.

I think you have to be very, very careful about making generalisations about your personal experience.

This is such a personal issue and people have to make choices which are right for them.

This is actually an area where it is totally wrong to make comparisons e.g. so and so is less well off than me because her child is an alcoholic whereas my child is autistic sort of thing. We are talking about human beings and they and their needs as well as their parents reaction to them are entirely individual, unpredicatable and legitimate.