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 wasn't referring to anyone on this board. But I know someone who did terminate because antenatal testing showed the foetus had the same horrible, progressive, terminal illness as her first child. Nobody knew more than she did about the reality of living with the condition, and her child could not have been more loved, her whole family was involved in raising funds for the relevant charity and awareness of the illness. She was not going to be physically able to lift and carry two totally disabled children, and she was not able to cope emotionally with watching another child go through what was happening to the first child. Yet she was so frightened of anyone finding out about the termination, because people are so judgemental.

I don't know what the shocked face is for. Why is it so terrible to hope for a child who will live?

that makes more sense. to loose a child to a ilness like that must be heartbreaking.

if you look your post followed eidsvold. I thought it was a reply to that.

Sorry - the board moves so fast. I didn't notice that and of course I wasn't responding to her post. I have a child with SN (untestable for) myself btw.

phew
didn't mean to offend just misunderstood.

I just feel very strongly when people imply that anyone who has a termination for disability is a bad person and bad mother can sound very intolerant and cruel when you look at the realities of some people's lives.
Of course it is appalling to tell people that they would have terminated for the same condition their child has!

Interesting about the gender question. Maybe there isn't much difference between 'can't cope if I have another girl' and 'can't cope with a child with special needs' at the individual level (although there is still a difference, all the same, it's not the same). Big difference at the level of society though if you end up with a very skewed population of 70:30 boys to girls, say. It really, really shows, whereas fewer disabled people doesn't show as much. There are societies where cultural expectations make having daughters cripplingly expensive. There are societies in which it's difficult or impossible to get even a fraction of the support and help someone might need if born disabled. Either or those things can make people think long and hard, and try to put emotion aside, and decide to terminate pregnancies they would really prefer to go on with. Neither may be what any of us really want to happen. But if you don't believe abortion is murder, you won't see it as murder either way.

You can't really debate this without agreeing about the abortion issue in general though. There are different attitudes - if you take the similar situation of people choosing embryos for implantation with IVF, while knowing something about genetic diseases they may have, you have two main attitudes:

(1) People who see selecting only the embryos without the disability as removing the disability from their next child - i.e. are imagining the same child, with and without the disability, and feel they're taking the disability away.

(2) People who see selecting only the embryos without the disability as choosing only some potential next children as worth being given a chance of life, while leaving the potential children with disabilities to wait forever and never get through to the world, even though they too could have good lives.

If you see it the first way it seems mad not to try to remove the disability - if you see it the first way you see anything else almost as inflicting the disability on the child. If you see it the second way, you tend to see it more as giving the children whose genetic mix has given them a disability a chance of life, rather than keeping them back in the foyer and never letting a child with that kind of mix get all the way into the world. You're seeing several potential next children, some with disabilities, some without, any one of whom may be the next child, rather than one 'next child', who may or may not have this disability inflicted on them.

Those different attitudes are significant but they're still not all there is when it comes to people deciding to terminate. I have a congenital disability and I tend to see things the second way much more clearly than the first. BUT I still, separately, would be thinking about whether I could cope if I knew a child with a disability was on the way - could I cope physically, emotionally, could my marriage cope, all of that stuff I'd be thinking about coldly, practically, and I simply could not rule out terminating (early) on those grounds. That doesn't mean I think everyone should or that I think disabled children don't have lives worth living. But I have lots and lots of potential children I could be conceiving, as well as any already conceived, and not all will be born. It would be hard to terminate any pregnancy, really harsh and difficult, but I can imagine circumstances in which I would do it, even while knowing that other people with superficially similar circumstances might make other decisions.

Really interesting and insightful post glowers.

For me I could have terminated for not being ready to be a parent quite easily - so can imagine not being ready for any potential child, but would struggle to terminate for disability - that would be ending 'this child' .

When we had ds3 we decided there would be no point terminating if he had DS as any potential child we were likely to 'replace' him with would be at very high risk of ds1's condition which has been more disabling than DS.

I see exactly what you are saying Glowers, but I think my view is that those bundles of cells (those very early foetuses in the lab involved in PID) are not children in any sense, so to me there are no children 'waiting to be born' as you put it (rather poetically I thought) and they cannot suffer from not being born, any more than I would have suffered had I been miscarried, or had my parents not had sex at the exact time they did, or had another egg been released etc etc. 'I' would not have existed at all.

I would not ask for my dd1 to not have down syndrome because that is a part of who she is. It is not the total be all and end all of dd1 but it is a part of what makes up dd1. I would rather remove the ignorance and fear which society perpetuates with regards to anyone or anything that is different.

there are so many points that jump out at me here:

Interestingly research states that when people have experience of children with or families who have a member with down syndrome they are more than 60% more likely to continue with the pregnancy after having the diagnosis.

Another statistic states that of the babies miscarried due to amnios - 3/4 of those children did not have down syndrome.

Yes - there are parents - of which I am one - and many others I have met who have gone on to give birth to babies with special needs. My daughter was born in heart failure!! Needed ICU and then SCBU for three weeks and then two open heart surgeries at 8 weeks old. That was so much scarier than the fact that she had down syndrome.

Whilst we were in London at the hospital - mother learnt at her 5 month old daughter had a serious heart complaint that no one had identified up until that point - she was devastated. Totally furious with medical staff that no one had picked it up prior to this point. Another lady came in for a scan on her child as they were questioning a heart condition - child collapsed in the waiting room - in ICU in a matter of minutes. So quick life can change.

Another friend did her masters and then her PhD on whether women are truly informed and really give informed consent when undergoing antenatal testing. She told me one thing she learnt was how so many women underwent testing and were stunned when something was picked up. Some were not even aware what they were being tested for. I had a friend who had a nuchal translucency screening test - no idea why just that the doc suggested it. Sadly she is not a minority case.

IME for many people who have had a TOP the diagnosis is lethal. There is a difference in a baby who will likely be disabled and one without a chance of life for eg acardia (no head) etc. I also would question 'I personally would struggle to terminate for disability' as I think all those who terminate struggle, it's not an easy choice.

"But jimjams termination is ALWAYS a struggle. There can't be anyone who doesn't find the idea incredibly upsetting."

Actually I can think of 2 people I know who were not upset by having a termination (for social reasons - wrong timing) at all. They were completely confident that this was right for them, they had no second thoughts. In one case the termination brought a huge sense of relief and in the other the person was completely matter of fact about it.

I can imagine times in my life when I would have felt the same as those 2 friends. I would have struggles to terminate for disability. The only disabilties I personally could have terminated for would have been those completely incompatible with life or ones which could have had a very negative effect on my health (and I don't include trisomy 13 or 18 i those). I am not saying that anyone else should feel that way - I am saying that is how I feel.

"I had to experience dd to realise that disabled babies are just babies and you love them the same."

Ah now that's interesting. DS1's teacher last year has years and years of experience in SLD/PMLD schools. And teachers in those places I find do really value the children. They're not like teachers in mainstream who think they know all about disability but don't (apologies to those good mainstream teachers out there who do understand - eg martianbishop - but you probably recognise the failings of many of your colleagues in this area). Anyway point being that this teacher has always had a very caring and understanding approach to her pupils. She has valued them. She's always been an excellent teacher, I personally highly value her opinion on ds1 as she understands him and works well with him.

But recently her child became quite ill with a disabling condition and the teacher told me quite openly that she now understood what it meant to be a parent of a child with SN so much more. That she had a much better understanding of us parents and of the things we go through.

I?ve been thinking about this, and I think the biggest issue is that people who have little or no experience of disabilities are unable to separate one from another. Generally they seem to be able to distinguish between physical and mental disabilities, but that?s about as far as it goes, someone is either disabled, or they?re not.

If we could just get past the label and educate people that there is a person underneath it then maybe people wouldn?t be so quick to assume that living with any disabled child is going to have a negative impact on one?s life.

People know the terms, but do they really know about the disabilities those terms represent? I don?t think so.

"I had to experience dd to realise that disabled babies are just babies and you love them the same." I see your point but some people terminating for inherited conditions already have a child with the same condition being tested for. They have experience too but that doesn't mean they would come to the same conclusion as you. It is highly individual. I also know people who have gone ahead with severe diagnosis. One for trisomy 18. She said if she could go back she would have a TOP as she went through a total nightmare for months while her DS was in NICU and it affected the entire family terribly. No one can say she didn't love her baby by her saying that.

Even with things you can see are wrong, you never know. My niece had a stroke in utero which damaged quite a bit of her brain (obvious on ultrasounds) and they weren't sure how this would affect her. She's now a happy, cute, clever 5 year old who is a handful (not because she's brain damaged but because she's a normal 5 year old nutcase). She has partial hemiplegia but can do most things without a problem. Attends a normal school, etc etc. And jimjams, I know what you mean about trisomy 13 and 18. My sister also had a high risk for trisomy 18, I think, and abortion was not an option for her.

It's weird - we have talked about it and I'm the one who has a child with health problems which affect day to day life. (Her first daughter was born at 25 weeks and weighed 1 lb 5 oz - she's a lovely, healthy, very very smart 9 year old now!)

Slightly off topic, but I think that you can be pro-choice and still have very strict limits on what are acceptable reasons for abortions. Not legal limits, but what is socially acceptable. It's a powerful thing, social acceptance.

Wise last line JJ..... Agree with the rest of your post.

Having observed families over the years I think that health problems usually affect a family negatively way more than actual disability (which is probably relevant to your post too jellybeans). I have a friend dealing with health problems in a child that make me go weak at the knees to think of, and spending months and months in a hospital miles away from the family home is enormously disruptive for siblings.

But often the conditions that we (society) terminate for -0 such as DS-these days do not come with these dreadful lifelong health problems. Yes the establishment seems to encourage the termination for LD's above the termination for health problems. That probably does have something to do with the medical model....

If terminating for disability makes people put the flags out and nobody is judgemental, why was the woman I know so desperate for people not to know, and genuinely afraid of people's reaction an even actions, should they find out? As I said before she had a child with a condition that meant who was going to get more and more disabled and sick until he died. She loved him passionately, but still chose to have a termination when she found out her next child had the same awful condition.
Having a disabled child does not necessarily mean you shun all testing in subsequent pregnancies either.

'Big difference at the level of society though if you end up with a very skewed population of 70:30 boys to girls'

The sex ratio is not as extreme in countries where girl babies are aborted because the disabling condition of being female in a culture where they have less value, but it is becoming a factor. Yet where are the people saying that what they are doing is rational and logical and quite alright because at the end of the day everyone wants to have the perfect family of boys - and to leave other families with the financial burden of bringing up girls?

I think there probably are extreme cases where termination could be an option but the extreme cases are used as a fig leaf to cover up termination for far less serious conditions.

No idea, but perhaps she felt guilty and was judging herself? Which of course she shouldn't have done. Maybe she couldn't bear to have to deal with people's pity. I can't see that it is something that people would necessarily want to share, for reasons nothing to do with opinions regarding termination.

My experience has been to be told about a termination for a condition less disabling than my son's, and about how it had to be done, because they had to think of the siblings and the career etc all said in front of ds1. Crass in the extreme imo.

I'm turning this off as it's distracting me from my work

But can I please just state clearly (as I think it gets lost). I have no issues with the choices other people make regarding termination. It's up to them (have some issues with allowing termination up to birth for things like moderate LD'S but that's another issue).

My 'beef' is, in the main with society's attitudes to disability- but especially learning disabilities, and particularly severe learning disabilities. Kids with SLD's are not blobby vegetables who don't matter that much. If a child with SLD's dies early it's not 'for the best', and if you ever say that to a bereaved parent- expect to be decked. Parents who care for their kids with SLDs are not saints. Ultimately these are just children- they experience their life just like the rest of us. With an understanding society and some concessions/special events they can have as many rich experiences as the rest of us. And remember when you're talking to a parent of a child with SLD;s they love their kid every bit as much as you love yours. So it does matter how you talk about them.