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?

Call not kill...

'how odd that 5candles. is putting down anyones opion that is not the same as hers, and seems to find so many things offensive.'

Yes, and you unpleasant and disrespectful and you didn't read her posts and don't know what debate is - repeat play until you realise talking to a brick wall is pointless and just walk away shaking your head.

Seriously, 2shoes, sometimes it's best to just step away and go for the chocolate .

Yes Total. Some incredibly heartrending stories and some heartwarming ones although actually they don't foster kids with physical or learning disabilities. Not absolutely sure why. Didn't feel that could cope.

Coppertop and jimjams, I do apprecite that, how vast autism spectrum is. Please don't think That I was comparing say diabetes to autism at all. I didn't mean to be offensive to those with autistic children. I was purely saying that some people like the idea of screening. It prepares some people. You could find out some of the basics. Some of the things you MIGHT encounter.
Some people like that. Others don't. And I am sure, for many, the reality, is something that no one could have prepared you for. I can appreciate that.
I am sure that no amount of information prepared my mum for my diabetic hypo that made me slip into a coma.

good point expat, i just hate it when some acts like they know everything about a subject as they have "met" people.

2shoes.That is the basis of your debate, no?
You cannot say that you are the authority on children with SN because you have one.
I sinceely hope you do not discuss anything that isn't happening in your house as apparently your opinion is not valid.
Perhaps we should all lie and say that we wouldn't have a termination to avoid (where possible) SN, but the truth is we would (we being many many woman in Britain today).

Oblomov, I agree with you. I'm not an ignorance is bliss sort of person. Of course it's important to be informed. Being informed is not the same thing as being able to predict/ understand everything about the future but it helps.

When my dad was diagnosed with MS he found it incredibly helpful to web surf, go to conferences etc. Likewise when my bf's mum got Alzheimers, her husband became an expert and found that incredibly helpful.

I know lots of women who chose to have antenatal testing and read up on everything even though they'd already made their decision to keep their child regardless.

I have never said I am authority on disabled children.

but.......

From what I have read some people have a TOP as they believe it is not fair to bring a sick child into the world knowingly. Not just that they 'don't want' the child. Some already have a child with the same inherited condition for example and have seen one child suffer and also could cope with one child with it but not two. Modern technology makes it possible to save babies which otherwise may not have lived naturally. It also makes it possible to predict which babies will have severe problems in the womb. Do you remember the man' whose skin fell off' he said if he had a child with the same condition he would have a TOP. It is such a personal thing. I don't see how, though, that someone who is pro-choice can be more offended or against TOP for problems than just any TOP. It's not really 'picking and choosing' ending a pregnancy if your baby has trisomy 13 or anencephaly or harlequin itchiosis etc. In most of these cases it is merely inducing the birth early since the baby would die anyway.

Oblomov- there is diabetes in our family too - SIL & DN. I think the difference is that with diabetes you can say this, this and this will happen. You will need to do this. You can choose this method of control or this method and so on and so forth. You can explain what will happen with hypos and how important it is to monitor blood sugars.

You just cannot do that sort of preparation with autism. Because no-one knows. I've had two useful bits of information wrt to preparation over the years. One on the same day as diagnosis when I was told there was no point trying to guess whether ds1 was heading for high or low functioning autism because no-one could tell and a second bit years later when I was reminded that I didn't know the what his future was.

If someone had taken ds1 into his SLD/PMLD school when he was 2 and said 'one day your son will come here' I would have been sick on the spot. By the time he went there (aged 5) we celebrated his getting a place. No preparation like living life.

Yes I think there are advantages in knowing say your child has DS (that's partly why I had a nuchal- if it came back high risk for DS I could tell people and tell them beforehand if when the baby was born it had DS I wanted congratulations- NOT -in sympathy cards). But I think- if the figures are correct- and 2 non-affected babies are lost for every 3 with DS picked up via invasive testing - then some people having the tests 'for information' might rethink. Of course it's a different type of risk you're taking if you've already decided you would terminate.

I also think that sometimes you're in a situation where you live with uncertainty .It's doable. I did it for 18 months to 2 years with both ds2 and ds3- for a condition that has affected ds1 far more than DS would have. And ds2 and ds3 were at much higher risk than the sorts of figures that invasive tests get used for.

From what I remember there is about a 2% risk of miscarriage after an amnio

You are told the risks of the trisomys e.g. 1/1200 or 1 in 200 or even 1 in 2. I think that most people will only choose to have an amnio if the risk is high, like 1 in 3 or 1 in 2.

Jimjam, I hear what you are saying. And yes what you have said is true.
I didn't compare diabetes with autism. I wouldn't dream of.
But please appreciate that there is also AN element of unpredictability about diabetes. No matter how careful you are, sometimes the unexplained happens. You could not have prepared my dh or my mum for some of the terrible things that have happened to me.

But I do appreciate, what you say about autism, and not being able to plan for some of the things that your ds has encountered. I can not imagine how difficult it has been for you.

But also, you must have talked to some people on MN and other meeting points - either internet based, or actual based, who have told you their experiences, and that has helped you in dealing with your son. Surely ? God I hope you have atleast had SOME help/support and information along the way.

I ONLY meant that information, helps SOME people accept/prepare/gives them knowledge. Not entirely. But sometimes helps a little bit. That was all I was EVER trying to say on this thread.

I have personally known people with disabled/sick children who have either terminated for the same (inherited) disability or have had screening for a subsequent child with the intention of terminating if disabilities were revealed. They absolutely knew the world of disability inside out, and loved their children very much, yet they knew also that another disabled/sick child would be too much for them emotionally/physically/financially etc. So it's not true to say that just because you have a disabled child or one with special needs that you automatically hate Other people with disabled kids or kids with special needs choose not to have more kids out of fear that any subsequent children will have the same condition. Is that really so different?

M/C risk after an aminio is usually quoted as 1%, but this will vary from doctor to doctor and some have personal M/C rates of 1 in 100.

There is a higher risk of MC with CVT, but that has the benefit of getting the results before the end of the first trimester

The risk of m/c from amnio is lower- probably less than 1%, but amnios are routinely carried out on 'high risk' babies- of 1 in 250.

I can honestly understand why someone with a risk of DS (or something a lot worse such as trisomy 13 or 18) would opt for an amnio when the risk was 1 in 2 or 3. But people do it for information when the risk is much much lower- and there is - as has been mentioned elsewhere today- pressure from medics often to do it. OK 1 in 80, the risk of DS is still higher than the risk of miscarriage. But 1 in 250? OK so 1% risk of miscarriage doesn't sound that high. But 2 'normal' babies lost for every 3 with DS picked up? Is DS THAT bad? I could understand those figures if they were for something like trisomy 13. But I think in some ways the medical establishment needs to look at those figures- get accurate ones, and then ask- given education etc today - are they acceptable?

I am actually going to be very brave and admit that I think I thought like fivecandles and twelvetrees before having DCs with varying degrees of special needs.

sorry - twelvelegs, not twelvetrees

I think you make some important points jelly. I think what I really don't like about this thread is the way some people are dismissing or trivialising others concerns about having children with severe disabilities especially the suggestion that parents are generally opting for terminations out of 'fear' or 'issues'. I think parents are able to make their own informed choices based on the condition of their baby and their ability to deal with it or not.

It's also wonderful that so many people can be so positive about having a disabled child. Sadly this is not everyone's experience. I think 12legs points about not feeling you can cope being nothing to do with not loving your child are absolutely crucial. Friends of my parents had a severely disabled child years before scans and antenatal testing who experienced terrible suffering. She could not talk, walk and was often in pain. When they were middle aged and she was in her twenties they felt tehy couldn't cope any longer and she went to live in a residential care home. But they never stopped loving her. They just couldn't cope physically or emotionally with changing nappies, lifting her in and out of the bath etc. While they never stopped loving her they did wish that antenatal testing had been offered to them. Of course, this was not something they would have discussed publicly, only in private with close close friends who understood how much they loved their daughter but how much they all endured.

Oblomov- I get support from sharing with other people. But tbh - most of the support that is needed is to deal with the system, not the child. That is where other parent's have been incredibly helpful. The children vary so much- there is support in being outsiders. And there is support in numbers (I cannot tell you how wonderful the surfing was- everywhere I looked the beach was full of happy, flappy shrieky children and it was utterly wonderful- I feel honoured to have been part of it). But children are just children.

My IL's have found the issues surrounding diabetes easier to understand than the issues surrounding autism. I'm not sure why- perhaps in part because the boundaries are more defined. Having seen what SIL and DN have been though I know now that it is certainly more complicated and less predictable and actually more serious than I had realised. But I think it is something that is easier to prepare for. If I was running a course I mean. It's more defined 'this is what it means to have diabetes'. I am about to run a workshop on autism for future social workers (may as well try and influence them) and one thing I feel I need to get across to them is the variety, and to drop their preconceived ideas and to listen to each individual story.

SixSpot, I'm honestly not totally sure what I would think if it happened to me. I always thought I know what I'd think but having children means I don't know for sure. I DO know that I would like to be totally totally informed before making any choice and any choice either way would be agony.

However, not having any more children perhaps if I'm honest partly because I feel so blessed as it is and don't want to push it but for loads of other reasons too - dp doesn't want any more, my age etc etc

"When they were middle aged and she was in her twenties they felt tehy couldn't cope any longer and she went to live in a residential care home."

Ds1 will go to live in residential care as well. By his twenties. Why would a young man in his twenties want to be living at home? He will go to live in residential care because he will get better access to activities and will have a better quality of life and more exciting and independent life. DS1 going into residential care will be about him not our ability to cope. I certainly don't want to smother the poor child at home for the next 40 years. I want him to lead a full and active life with many experiences. Same as I want for his brother.

"When they were middle aged and she was in her twenties they felt tehy couldn't cope any longer and she went to live in a residential care home."

Ds1 will go to live in residential care as well. By his twenties. Why would a young man in his twenties want to be living at home? He will go to live in residential care because he will get better access to activities and will have a better quality of life and more exciting and independent life. DS1 going into residential care will be about him not our ability to cope. I certainly don't want to smother the poor child at home for the next 40 years. I want him to lead a full and active life with many experiences. Same as I want for his brothers.

I do think there is pressure from medics.

A friend of mine had the tripple test and her risk for downs came back as 1 in 180 something. The mw rang her at home to tell her this, and then said, "obviously this is very high risk, so what you need to do is to discuss it with your husband and then decide whether you would like to continue with the pregnancy.) no offer of tests, or amnio, or anything. Friend then went for a scan and it turned out her dates were out by a week which had totally skewed the tripple test result.

Re wanting to prepare, conditions like autism are so hard to prepare for though surely, as autism is such a wide spectrum that your experience will differ dependent on whether your child is at the high or low functioning end of it, or somewhere in the middle.

Actually think that ageing is a really important issue as well. There is a big difference between caring for a disabled baby and a thirty year old.

BTW I tell professionals all sorts of crap in order to access services. I certainly don't tell them what I actually think.