To be shocked 90% of Down's babies are aborted?

[Strictly]

I was jut reading this sorry, yes it's from the DM!

and then did a little Googling and it turns out 91% of people told their baby has DS will have an abortion...

I'm just astounded it's so high. I'm not making a judgment on the idea people might abort, but am very shocked that it seems almost universal to abort if told the baby has Down's.

I wonder what it is about that particular condition that 91% of people feel they could not live with? The rates for abortions of Cerebral Palsy babies for example is nowhere near as high. Is it just that Down's is easy to detect so the majority of people actually get the chance to decide?

"given that pregnancies where disability is detected can be terminated up to birth, do people think that a baby born severely disabled should be euthanised? and if not, why not?"

i agree that it is weird - baby unborn 39 weeks disability - you can terminate

baby newborn disability - you cannot.

foetus under 12 weeks or 24 weeks - yes (and buzz yes i see the difference, in a way ) totally different to one which could survive.

but you have to decide on a legal cut off dont you?

you don't see any difference at all between born and unborn then wannabe? Are you anti-abortion in general?

I honestly don't know what we would have done if we had been told DS would have Downs, really don't know.

With this pregnancy it was different, because finding out that our baby would definitely be disabled has implications for DS, as well as DH and I. He would be carer once we are gone, and that isn't something I would willingly choose for him.
If the baby is born disabled then that is a different thing and we will all cope and life will adjust as it has for thousands of others, but we wouldn't have wanted to put that burden on DS knowingly.

well i had a cvs but wouldn't necessarily have terminated for downs syndrome as some "lovely" posters have suggested I would have terminated if the baby had been found to have edwards syndrome for example but then there would have been a high risk of miscarriage anyway.

Just because some people can wait 9 long months to find out if their baby is ok doesn't mean everyone can.

I already have a son though and would be thinking of how having a baby with downs would affect his quality of life. I wouldn't have had a baby with downs just so I could say "look at me, aren't i just so fantastic and selfless!" As another poster said, having a child with downs (or, i imagine, any other disability) is no walk in the park.

Nancy, please don't think that the deeply unpleasant comments of some posters on here is representative of the way most decent people with a grasp of human empathy think. I admire you for coping with such a heart-breaking decision.

IT is very sad but not that surprising.

Over 90% of people have ante-natal screening, and I would say most of them would be screening so they could abort a disabled baby rather than mentally prepare themselves for its arrival.

I actually think they should counsel pregnant women more about screening rather than it just being expected that you will have screening. People should at least be asked to consider why they want screening and what they would do if there was a problem detected.

Nancy, I can really empathise. I terminated my fist pregnancy because of foetal abnormality, though not Down Syndrome.

It was the hardest decision I have ever made and not one based on the abnormality but the different problems my baby had because of that abnormality (diaphragmatic hernia, lungs undeveloped because intestines in chest cavity,heart on wrong side of body, cleft palate, microcephaly, hands formed wrongly) as basically he had multiple abnormalities of the upper body, limbs and head which and for example the lungs being unformed would mean he would not breathe upon birth and there would be nothing medically that could be done so he would have died at birth, if indeed he was full term.

I certainly did not terminate my pregnancy because my baby was not perfect. Infact I have since had a DS who has visual impairment and sensory issues and a DD who has a different visual impairment (and another DS who is developmentally/physically 'normal'.

To get back to the OP point, I am not surprised that there are a high number of pregnancies of babies with DS that are terminated. I would however question what other abnormalities were present as whilst society often just see's the physical characteristics of DS, we are not often aware that there can be heart and other abnormalities too.

I would say I'm normally very much pro-life, however I do struggle with the idea of whether it is better a disabled baby is aborted or born to parents who don't want it, will not love it.

I think some people are self aware enough to know that they would not be a good parent to a disabled child. They may not be willing to give up that much of their own life to a child who may never be able to leave home. In these cases can it really be better that a child is born to live what will already be a difficult life, with parents who may well be very resentful of it?

That is something I worry about.

It's not about love. A parent could love their child with every fibre of their being, but know that when that child is 40 and still needs the same level of care he did when he was 5, the parent will be 80 and facing their own death with the heartbreaking knowledge that their child has another 40 years to live with no loving advocate.

why do you worry about it?

I'm gonna live - we had nuchal translucency screening for our dd3 - due to learning that my dh had a congenital heart defect ( diagnosed at age 40) we were doing nothing about it.

I was counselled by a genetic counsellor who began by arguing with me that a raised nuchal fold could indicate conditions other than ds, who scoffed when I pointed out it was discussed and researched by Prof Nicolaides, when then lectured for 10 minutes about what it would be like to have a child with down syndrome - WHILE my eldest child who clearly had down syndrome was in the room with us!!!!!!!! IF that is the sort of counselling that women who go for a NTS in our local hospital have then OMG!!

We have two other dds and there is no expectation that they will be dd1's carer - in fact to be honest even at 6yo I don't think dd2 is even aware that dd1 has down syndrome - dd1 is just her big sister - someone to play wiht, bicker with, be silly with, gang up against parents with. She is aware that dd1 can do things that she can't and vice versa but it is not seen as a disability - that is just dd1.

I did not have dd1 as a badge of my selflessness and martyrdom or to say how fantastic I am - god I am incredibly selfish although not so far up my own arse anymore - thanks to being a parent. I am not some wonderful madonna who chose to have a child with ds.

Actually no I chose to have the little babe that I saw in an ultrasound sucking her thumb and being totally unhelpful everytime we had a scan - a little iamge of a girl who would go on to be our first born daughter - a daughter over whom we have shed tears and laughed and loved and enjoyed - as we have with the other two.

A daughter who laughs from the depths of her belly, who has a wicked sense of humour, who is a schmoozer from way back, who sees the good in people, who is able to make even the most cats bum faced woman in the post office queue smile by saying - thank you your highness when she does something like moves away from the door so we can get out.

A daughter who loves to dance and sing and play. A girl who loves playing barbies with sisters, running wild at the park, swimming at the beach.

A little girl who is writing and learning to read - just as her siblings are, who loves going surfing - just as her siblings do.

That is the baby we chose to have - that is the baby we saw.

yes she has down syndrome but it does not define her as my dd2's shyness does not define her, as my dd3's wildness does not define her - it is but a small part of her.

My brother has Downs Syndrome, he is NOT a burden to me. Our parents are getting on a bit now, but my brother lives in a flat and goes to daycentres and has lots of support. I do not feel my parents have burdened me with the care of my brother when they die.

I know many disabled adults who's prognoses were poor... won't survive more than a few hours after birth, won't survive 48 hours, won't see their 5th birthday etc etc etc.
And now many of them are in their 40s/50s.
Perhaps the doctors like to prepare the parents for the worst case scenarios.

Perhaps a problem is that not enough people are mixing with disabled children/adults so fear it more.

Seeker I think that is a very valid point.

I have a friend with a sibbling who has DS. He is in his 20's and healthy but whilst he can, for example work, he cannot live independently. His parents are now approaching their 70's and the knowledge that they will die or cease being able to care for him in the forseeable future breaks their hearts.

Fortunately he has sibblings, who have all curtailed their own life plans to a degree to ensure they will be able to care for him after their parents deaths. But I do find it unimaginably sad.

I only worry as I don't feel in my personal situation I would be able to make the sacrifices needed, so it would be a very hard choice for me.

I can see why older parents faced with this decision may have to very carefully consider that if they say have a DS child at 40 that they themselves may only live another 40 years to live, and would face leaving a 40 year old that needs as much care as a child still.

I agree about the self selecting bit, that's clear.

But I do worry about people who say @Oh I would test for this and abort'- based partially on my sister's beleifs, I don;t think she ahd a clue that plenty of SNs cannot be tested for and I do wonder how those who make that choice if then faced with a child with ASD, CP (of course youc annot test for that, it's very often a birth injury)......I think they should make the non-testable syndormes plainer in the literature.

And despite all the stuff in the press we're not anywhere near tests for ASD- trust me on this, I submitted my aetiology of ASD essay for my MA on Monday .

I am not surprised, I know famillies where Mum left baby in SCBU when faced with that or have Dad leave her; I have known delightful people with DS who leead full lives, and I have known people with DS who are very severely impaired and who could not be cared for outside a locked unit.

I personally didn't make the deicion to test, but I thin I can understand those who do. I have 2 chidlren disabled with an ASD, so suspect I know some of what it is to care for a child with DS, though can't imagine the possibility of heart problems on top.

it is about individual parents /prospective parents making their own choices. based ont eh facts available to them thru testing etc.

you cant apply a broad "who should have these babies" scenario

but the fact is some of those "people [who] are self aware enough to know that they would not be a good parent to a disabled child" may end up through no fault or preplanning to have just such a disabled child...

or their healthy newborn goes on to ahve illness or disability.

people can make choices about what they know eg decisions on an unborn baby.

but they wont know what they will do about other similar or different challenges until they faced with them.

it is easy to say "i cant deal with xxx" " i could never deal with xxx" "i dont know how you do it" etcetc - and it is ok to make decisions eg abort when you have certain information .

but when the sh&t hits the fan for a different reason - and it might be a different disability which wasnt detectable - most people will find ways to cope.

mostly disability in the family isnt about a choice of whether to abort or not. we jsut have to suck it up - or make other decisions such as giving the baby away.

if you can have that choice prenatally - well fine. but no one can say "i could never...." because one day they might have to...

It means that a lot of people are aborting children because they might have Downs. If you're told 1 in 5 that means 4 in 5 the child won't be effected. A friend was told the 1 in 5 by the NHS and went private to get 3D scans and more testing. With more info the risk fell to 1 in 200. Her baby did not have Downs.

"I think some people are self aware enough to know that they would not be a good parent to a disabled child." I think that you can never know until you are in the situation tbh.

The reality is that we all have preconceptions about parenting - our children will behave thus way and eat that food and never watch this tv show and will sleep through at such age, and never have a dummy, and you will never shout, never smack, will have reasoned discussions about everything and so on, and as soon as you give birth it all goes out the window because it's different to how you thought, and the feelings are different to how you thought, and suddenly your world has turned upside down.

It's easy to imagine not being able to cope with the as yet non existent disabled child because it's not real, the feelings do not relate to someone that is related to you so you can be unemotional about it. But I don't imagine many parents who do have disabled children thought they would be able to cope either, and they do.

And nobody is saying it isn't hard - of course it is.

But if someone chooses not to take that on it is a conscious choice. yes it should be up to them but that doesn't mean that others have to believe it's right or feel sad that a baby was terminated because it simply wasn't wanted any more.

And I am referring here to pregnancy where the disability would result in a live baby, not conditions that are incompatible with life, which are of course different.

If I was pregnant with a baby that tested positive with downs syndrome I would abort.

When I was younger one of my dads friends had a son with downs syndrome who died at age 3 due to complications that are common with downs syndrome. People with this condition who survive to live semi independent lives without any other major health problems are the minority. I will always remember this friend turning round to me and telling me that if his wife had got pregnant with another baby with downs syndrome they would have aborted, and advising me to think very carefully about what I would do in that situation.

It isn't just about coping with a child with learning disabilities, quite often it is about coping with a child with a severely shortened life expectancy who will be put through a lot of painful procedures at a very young age, and even if the child is one of the lucky ones then the vast majority will never be able to live independantly. What happens when the parents are dead or too old to take care of the child, who in many cases is now an adult who still requires constant supervision.

Those are all things people are going to have to consider and I really sympathise with anyone who is put in that position. I honestly don't believe anyone terminates at that late stage because the baby isn't "perfect", I think they terminate because they have decided that the effect (short or long term) of a child with severe disabilities on their family is not something they can cope with, and it would not be in their or the childs best interest to continue the pregnancy. It won't be a decision anyone makes lightly. I don't think anyone else can judge, because honestly no one else knows how the parents in that situation feel apart from the parents themselves.

narky I don't think many (any?) are aborting on the basis the baby might have Downs. People who are given a high result at the triple test then go on to have the CVS or Amnio both of which are diagnostic.

I don't think you would be able to have a termination without the diagnostic test which of course is definitive.

Sorry. I managed to muddle things.

You're right, not abortion, amnio which can cause miscarriage.

to throw statistics in - where people have a fairly good idea about and personal experience of down syndrome - they are over 60% more likely to continue with the pregnancy.

this does beg the question if people are so against(for what ever reason) having a disabled baby, why so so many babies still get damaged at birth, causing major disabilities and nothing is don to stop this.
more often it is dues to negligence(very hard to prove) yet nothing is ever done

eidsvold, that statistic makes sense to me. That's why I wonder if part of the problem is that people aren't mixing enough with people with DS.
Fear of the unknown.
And I guess there won't be much personal experience if 90% are aborted.

i am not suprised at that at all. After all, why would you have the test unless you were seriously prepared to consider termination.

like you, i have no view on what other people should do- i think that i probably would have a termination but will never truly know as thank god havent been in that position.