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 am allowed my opeinion 5candles that parents without disabled kids have no real idea what it is like. '

I absolutely agree.

That doesn't mean that I am not able to make an informed decision about whether or not I personally want antenatal testing and then an informed decision about how I act on the results of those tests. And that what decision I personally choose should not be respected just as much as I would respect a parent's choice not to have any antenatal testing.

I had a TOP for lethal genetic condition and also declined an amnio after a high risk result for Downs so can see it from both perspectives. We decided that anything other than very severe/fatal we would cope with so were OK with Downs, I also have a friend whose little boy has DS which helped me see that it wasn't so bad. The hospital just assumed we wanted the amnio and had booked us in for it!! I think it is wrong, though, to assume a baby is 'unwanted' (as a poster said) when parents feel they are having TOP to save a baby suffering or dying anyway. In many cases it is a risk to the mother to go ahead (if there is excess fluid etc HELPP syndrome) and there has to be a consideration of other children. I loved and still love my baby but I could not watch her suffer or allow the fluid to put my life at risk, if there was any hope I would have taken it. If someone judges me, so be it. I never understood it either until put in that position. Same as many other situations in life.

Habbibu - I apologize

I will step away from this thread now to not offend more people. All the best to everyone.

Thank you, Cote.

Just don't get why you're being so unpleasant riven:

'I'm a disabled person with a severely disabled daughter. I know what its like to be both disabled and have a disabled child. So have opinions.'

Is the implication that I'm NOT allowed opinions on what I consider to be right for MY family in terms of antenatal testing or termination because I'm NOT disabled???

I agree fivecandles, the importnace of 'I' and 'feelings' is relevant for us all, not just those parents who have a child with disablilities or SN.

Is mid-t termination murder? Would it be if that child was killed after birth? Nurses are trained that if Amillia had been a termination to look after the "foetus" and it's not how to put a tube down their throat or repair a torn ear. If a pregnant woman was murdered it would be two counts of murder.

12 legs. I am not being condescending I am being realistic. My son was diagnosed aged 2- I was told then that no-one could predict his future. Aged 9 now and non-verbal I still don't know what his future is. My friend met someone who learned to talk aged 13 and as an adult sat in a pub sharing a beer with her with nothing all that obviously wrong.

My son at 2 was so passive I could put him down and 3 hours later he was in the same spot. Aged 9 I can't let go of him outside the house at all.

My friend's and I constantly marvel at how completely and utterly different our children are. I have friends who struggle because their child constantly asks questions. Then mine who at 9 is (as of this week) actually saying his first word ever - that is pronounced so others can understand- it's Mummy which is nice. I have friends who can't get their children out the door, and then people like me who struggle to keep them in.

I find the idea that a test that says that 'this child is autistic' could prepare you for anything at all laughable. The range of issues you could experience is huge and changes all the time. I can't prepare for adulthood although I know it will come as I have no idea what ds1 will be like then.

Twelvelegs, completely agree and well expressed.

A bit odd how some people talk about terminations as 'killings', say that all children are precious gifts and then wonder why nobody has ever admitted to them that this is not how they feel about their own child or pregnancy

Apart from knowing people personally who do not feel like riven etc I have read many, many heartrending accounts of highly intellient people who have made the incedibly difficult decision to terminate their pregnancies after completely weighing up their needs, the child's needs, quality of life etc etc.

While I have enormous respect for those people who do choose to bring up disabled children (where they have a choice) and do an amazing job I think that the way some people are dismissing the views of people who do not or would not behave or feel like this is quite shocking.

Not read all the thread but you can have testing for downs & many other conditions with cvs & amnio. It's on offer but it's up to the parent/s if they do the tests and what they do with the results. I respect others actions as the situation applies to them.

I have repeatedly stated on mumsnet that people can do what they like with their own bodies and own child. There are conditions I would terminate for (anencephaly for example) and everyone will draw their own boundaries. I struggle with people feeling the need to tell me they would terminate a child like my own. I don't understand why people do that. I have no need or wish to know.

Oblomov I of course meant the Prof. Kings guy article here

'nope, not against abortion under 24 weeks' So it is OK to have an abortion of an 'unwanted baby' but not one with a severe disability?

I'm not sure that people are dismissing those views (on ternimation, etc).

what hasn't been addressed is WHY people are so scared of having a disabled child. why peole are so sure that if they did have a disabled child it would wreck their lives, and their children's lives.

I posted what i dd (about having a disabled daughter who hasn't wrecked my life) in answer to posts saying that posters thought it would do that.

But no-one has really said what it is that would wreck lives.

An inability to communicate?
complex medical needs?
Learning difficuties?
shortened life expectancy?

all these are things that could happen at any time to anyone. and most of the reasons for the above difficulties cannot be tested for antenatally (which was kind of the original point of this thread - why get hung up on testing for something that isn'y going to wreck you rlife, when there are a whole range of other disabilites that aren't going to wreck your life either)

I have just read this fascinating thread right through and it has at times brought tears to my eyes.

I am very thankful that I have discovered MN where my previous preconceptions are challenged and torn apart.

Without personal experience, it is difficult to post on any SN thread, on this one even more so as it is such an emotive subject.

My feeling is that the whole testing is very hit and miss. Someone posted (I think it was 2shoes) that you cannot test for a car accident or a later disability and as such cannot terminate for that. And who can say that they would know in advance if they could cope with a severely brain damaged child because of an accident.

That, for me, sums up the argument. There are no guarantees, there are no sure things in life. If you are lucky you are blessed with a DC who brings you joy and happiness.

I would not judge anyone who terminated because of a high DS risk but I do judge any medical professional who does not inform the parents of the reality of life with a child with DS. I suspect that many health care professionasl paint a gloomy and terrible picture of life with a disabled child. That and the terrible attitude that we as society have towards children with SN is the biggest hurdle that parents with disabled children face.

When ds3 was on the way I had high risk for ds. i refused amnio but they posted me a leaflet called 'your child has downs. It was less than 1%. My son doesn't have Downs. He does though have sn (PDD-NOS dicussed wit Paed today). He will always need some level of care. He is also a pure joy to everyone.

My ds1 has less severe need, is aggressive often but I wouldn't swap him for an nt kid for anything.

With ds4 the only tests I had were scans- i felt that at a home birth i needed to minmise risk factors.

The tests only caused me immense stress and concern. I couldnt have the detailed scan at 20 weeks because they were too busy, so I just knew that if it were ds i couldnt rule out heart issues.

Some children with sn need complex draining care, but ime of sn the biggest problems are manmade- access to therapy, financal help, carers allowance being a pitiful £50 a week, schools, statements...... and even then its worth it because my boys are amazing and I feel exactly the same way about them as the nt 2.

I think tests have a role, but the issue is the presumption of termination and the complee mis-selling of amnio. Amnio is more risky than many ds risks- tha makes no sense to me. Yet we had to fight against a tirade of midwife calls etc to not have one.

We too had the idea of preparing ourselves but found it more stressful in the end.

But jimjams termination is ALWAYS a struggle. There can't be anyone who doesn't find the idea incredibly upsetting. I have a huge amount of respect and sympathy for people who feel they have to go through it just as I have for parents who choose not to.

i have not had any DS screening for dd4. However I did spend a couple of days in london at 17 and 26 weeks ish having detailed scans of babys heart. The basic set up of her heart is fine. no enlarged bits, all valves correct, all plumbing in the right place.

however.

every 4 years from now, i will have to take my dd's back for more scans. Nothing is guarenteed.

dd1 has a minor heart defect.

dd2+3 are fine.

i couldnt/wouldnt abort for a reason like DS, but could if a scan revealed baby was incompatable with life (i hate that phrase). but then you hear of miracle stories. I read about agirl who had, i think, edwards symdrome. which is fatal in the first year. but she was still alive at age 10. it really made me stop and think more about it.

fivecandles I didnt read riven's post like that, I do think tat Riven is a voice coping wih far more than most of us, and an intelligent strong lady to boot, who deerves to be heard and considered.

Sorry, can anyone, just anyone, tell me how a four-month old foetus is 'not yet a human being'?

DNA - human
Heart - human
Brain - human
Soul - human

I am just that someone can hold that view.

Does that mean that all the threads on the Miscarriage section of this site are meaningless? Because if all of those losses were not human, what on earth are the people who suffered them grieving for?

I am just at a loss to see how people can hold these views, and publicly express them.

silverfrog

'what hasn't been addressed is WHY people are so scared of having a disabled child. why peole are so sure that if they did have a disabled child it would wreck their lives, and their children's lives. '

Incredibly personal so impossible to address really.

There are as many individual ways of reacting to a child's needs as there are different children and different needs.

That said, I absolutely agree with those people who are saying that there is not enough support for people with disabilities and their parents and too much prejudice.

That said, there could be unlimited support and an incredibly positive attitude and there are still some parents who would choose to terminate their pregnancies if told that their child would be severely diabled.

In fairness, lou, Cote has apologised, and very quickly and decently.

riven I think you're right that there is a lot of fear and prejudice about disability but to suggest that the only reason or the main reason that parents choose to terminate a severely disabled child is for this reason is deeply patronising.

There really can't be many (any?) women who opt for a termination without getting a vast amount of advice and information and agonising about their choices.

Your assumption that women who opt for termination do so out of ignorance is just as dismissive and patronising as someone else sayin that those who DON'T opt for termination continue their pregnancy out of ignorance.

5candles, don't get me wrong, I'm all for individual choice - what ppeople want to do re: termination (whether for disability or any other reason) is up to them.

The way i read this thread, the parents of disabled children only started posting with "my child is great" (vast over-simplification) because there was a huge undercurrent of feeling that ALL disabled children blight their failies lives in some way.

we all said that we do not find this to be the case.

and then we were told that, of course, given that we have disabled children, and do not think they are a burden, then no-one would say otherwise to our faces. Which is a bit odd, really. We have never said that we would disagree with anyone who was having a hard time (whether due to coming to terms with disability, or difficulty with society's attitudes), just pointed out that the "my family will be wrecked if I have a disabled child" line is not necessarily true.

"There are as many individual ways of reacting to a child's needs as there are different children and different needs" - this sentence could easily have been written about an NT child, so why is it so different to want to talk about people's reactions and thoughts on disabilities?