Ignorant Guardian article.

[eidsvold]

Anyone else read the 'confessional' in the guardian magazine today???? My dh saw it before I did and suprisingly he felt compelled to write to them to provide a more positive view.

Basically the story is about a woman who decided to terminate her pregnancy as the baby was shown to have downs ( amnio) and a heart defect. So you can imagine how that went over in our household. Some of the info told to her by medical professionals was appalling in terms of ignorant and ill informed. Whilst I want to feel sorry for the woman - I can't.

I am in the process of reworking our family story to send to the Guardian in the hope they will think about what they have written and be prepared to provide a more balanced view.

Even sadder to note that next week is Down syndrome awareness week - Good onthe guardian for helping to break down stereotypes and stop misinformation!!!!(NOT)

Feel free to join us in writing in to complain - if you get to read it.

www- you are entiteld to your view and you are perfectly entitled to state it here of course. You shouldn't feel like you can't. But you have to see that for Eidsvold your view will be offensive. I assume you wouldn't say to a "real life" friend with a baby with Down's "oh if I found out my baby had Down's I would terminate"- or at least you wouldn't state it so bluntly. For eidsvold terminating becuase of Down's is like terminating becuase of ginger hair, or glasses, or smelly breath or whatever- there is something that you find so bad about her child that you would terminate if your child had it as well.

So not saying don't state your view- do- of course- but do see that in this case your view will be very hurtful to many mothers of baby's with Down's. So don't be surprised if they react strongly to that view. This isn't an attempt to send anyone one a guilt trip- just a clumsy attempt to say please recognise why stating "I would abort for Down's" is so uncomfortable for some of us on here. And please don't censor your thoughts, but don't expect anyone else to either.

I suspect a lot of the discordant attitudes are as a result of people not keeping up with changing opinions, not through deliberate unpleasantness. When I was a child (1950/60's) we knew at least three DS children, but there were also many others who were hidden away in homes etc. It was perceived that most of them would never talk/walk/learn or be independent in any way and that those who did were rarities. Most parents then of DS babies were older, there were no resources to help them bring up their child and their child would end up in a home anyway, when the parents died. That's if the child didn't die from one of the physical complications. It really was a gloomy outlook, back then, believe me.

Attitudes to DS began to change a bit - I think the actor Brian Rix did a lot to break down barriers, but the outlook still wasn't wonderful. It also became less acceptable to put your child into an institute, although there were still very few resources to help you cope at home and parents had to shoulder the burden single-handed. Parents were literally left holding the baby. They could no longer 'give the baby away' and yet no one was prepared to offer any help. Parents were abandoned. When testing came along it seemed to offer a way out from this dilemma and it was thought to be progress, freeing both parents and child from lives of misery.

It was then discovered that with tailored care and attention children with DS could in fact achieve a lot, lead a happy life and gain some degree of independence and that maybe it isn't so bad after all. But testing was here, not everyone knew about the improved outlook and old beliefs die very hard. Also, some people just don't want/can't cope with the challenge.

A rather controversial thought I've had is that of adoption. A number of years ago, pre-testing, it was common practice to have a DS (or otherwise disabled) child adopted if you couldn't cope. This no longer seems to happen. Would it be socially acceptable for a woman to give up her DS child for adoption, if the alternative was termination, or do people think that that is as bad as termination?

Anyway, that's just my perception of how attitudes to DS have changed over the years.

Well what can one say about this? This couple were lead by the negativity of the hospital and consultant, where was her cardiac scan?, her option to discuss the cardiac 'defect' soft markers are NOT structural abnormalities!. Where was her time to make decisions away from the hospital environment? no one should be pushed to an Amnio straight away, where are the berevement consellors? etc....... Her decision is hers and she must live with this but WHERE WAS/IS THE SUPPORT FROM THE HOSPITAL? We are in the NHS to provide answers and support the decisions made not tell people what they should and should not do. I feel terrible sadness that this hospital has let this poor lady down.............

Yes just got home and dh has shown me the article in the observer magazine. It was interesting to note that a recent survey which asked people about their perceptions of people with Down's syndrome showed the lack of understanding that exists.

Here in Switzerland I've noticed a lot of people with DS (mainly adults, as I'm usually out and about during school hours). I'm not sure it's changed my opinion about Down's -- but definitely hit home that people with it can and are living full and seemingly happy lives. There was one of those "Real People" exhibits in a local shopping centre (one of the artsy exhibits with black and white photos of everyday people) which focused on people with DS. Each picture had a little bio and babies to adults were represented. I think the integration here is good (or at least where I am), although anyone who has a physical disablity and requires assistance walking or up stairs, etc, is screwed.

Anyway, the reason I feel the need to post is that 4 1/2 years ago, my sister gave birth to a baby at barely 25 weeks. My niece is now a precocious whirlwind with nothing to suggest she was in the hospital for almost 3 months after her birth. So when someone mentioned that this woman terminated at 23 weeks, it made me feel a little sick. I can remember hoping my sister (who had a very bad pregnancy) could make it until at least 23 weeks, because then there's a chance, however slight, that the baby can live.

I refused all the tests for Down's and things like that, but kept those that could help the baby after it was born (so a surgeon could be there, if need be). (In case you all were wondering...)

The "however slight" should read 17%.
(from www.bliss.org.uk/about/facts.asp)

Thank you eidsvold for starting a really interesting discussion.

I refused an early nuchal fold test in my pregnancy because my GP was very good, explained what the test was for and then said "really, you have to ask yourself what your decision would be if you were deemed "high risk". Would you then go for further testing, and on the basis of that further testing might you consider termination?" I decided that I personally wouldn't be able to have an abortion, so I would rather not know and didn't go for the test.

I mentioned this to my dh's aunt once and she reacted in horror and said "Of course you should have an abortion in that situation. A disabled child means a disabled family." I was stunned that anyone could think like that.

That said, it's a horrific decision to have to make at an extremely vunerable time. On balance, I've always been pro-choice (whatever the circumstances - no-one else can make that choice for you except you so I'm afraid I can't condemn this woman's choice only feel complete sympathy for what she's gone through) but personally anti-abortion (if that makes sense). I think the article was valuable if only for the description of what she had to go through to terminate the pregnancy - I'm sure it's not something most people consider otherwise (it's certainly not something I have considered previously - and it's confirmed for me that I couldn't do that).

But Jimjams, if I did say to a real life friend with a down's child 'oh, if my baby has down's I'll terminate,' (I don't see myself saying it quite like this though) it's not the same as saying 'your child shouldn't be alive,' and I don't believe that in any case, not at all. Given a real life friend with a downs baby and, say, high risk tests myself of course I wouldn't be saying 'you shouldn't have been allowed to continue your pregnancy', definitely not, but I might be saying, 'I'm not sure that I will make the same decision as you'. In this whole hypothetical scenario I'd have to tell my friend about my decision since presumably any friend would know I was pregnant and opting for tests, so what else would I be expected to do? Lie? Making a different decision though wouldn't mean that I thought her child shouldn't exist, not at all. My position is absolutely NOT that downs children shouldn't be born - it is that every woman should be given full information about testing, interpretation of the results and the options open to them, along with appropriate support and counselling. Then each woman should be allowed to make the right decision for them. My position is also that freedom of speech and a woman's right to chose termination (for whatever reason actually) are vitally important. I don't want to cause anyone offence here, not at all, but I do want to be allowed to say that MY decision might be different in the same circumstances. And I'm not sure why that is insensitive. I wouldn't wish the death or non existence of anyone's child, downs or not, any more than I would wish the death of my own son and I'm not wishing that for anyone here, absolutely not.

But whilst I believe that it's each woman's choice to decline testing and to (happily) live with any consequences, I also believe that it's each woman's right to accept testing, make her own decisions (including termination) and carry them out.

Eidsvold's (and Thomcat's and others) children bring them happiness, as all our children do, and they made the right decisions for them. I absolutely defend their right to have made those decisions and to talk about why and how and to help remove prejudice and change people's views on downs. I also though, defend my right to potentially make a different decision and to talk about it too (as the writer of The Guardian article did). It doesn't mean I think anyone who has a downs baby is wrong, it just means that I might not make the same decision, that's all!

I don't know if I've got my point across very well here. I suppose what I'm trying to say is 'each to their own, we're all different and we should be allowed to say so'. So yes, of course people are entitled to disagree with me (and I do realise I'm in the minority here) but I don't think I'm saying anything offensive since I'm not talking about getting rid of other people's children or disagreeing with their decisions. And although I accepted testing I completely understand why many, many other people don't.

I, too, read this article and was very moved by it, although thought the message from the consultant highly negative and, from the sounds of it, also inaccurate.

I was only just recovering from a piece in G2 last week by Julia Hollander: "Why is there no one to help us? A desperate struggle to care for a severely brain-damaged baby", which was absolutely heart rending.

I'm with GeorginaA in feeling pro-choice generally and yet not for myself. When I was pregnant with ds I refused the blood test which would have indicated a high risk of a Downs baby. I am so impressed with women who turn down all the other hospital stuff - scans, etc. It never occurred to me that I could. And I suspect you would be viewed as being irresponsible by the majority of the medical profession, but if there are no other problems in the pregnancy, I don't see why you should.

www - I think that you have articulated your thoughts very well. On a similar note to the issues that have been brought up here, there are several couples who are currently trying to have a child to 'save' their already living sick child. Here is one such example. Need less to say they will be 'rejecting' embryos which are not close enough matches to the needs of their very sick child. Whilst the ethics are cloudy, I do believe that such a family have the right to try to do what is best for THEM and THEIR family.

No doubt there are other families out there contending with the same illness who would beleive this couple should accept what will probably be the death of there son, as this is what they will or would do. But that isn't the same as one of these parents telling the IVF parents to give up.

I'm afraid with situations such as these, and in the case of the Guardian writer, it is always going to be a question of personal morality, in which there is no absolute truth. Its a question of whether the unborn baby and the mother have equal rights or if the mothers right is paramount. And this applies whether the unborn baby has DS or not. On another thread someone asked where the line is drawn, but I think that with abortion the law has to accomodate case by case circumstances. Other pro-lifers that I have debated with can understand legal abortion for say rape of incest victims, or where the baby has a conditon incompatible with life.

I am pro-choice, though I don't think that I could ever go through with an abortion. I think that up to a point (baby viability for me) the mother (and I say this as I think that the woman will always have the final say) has the right to determine her quality and direction of life. If a woman decides that she cannot cope with a child with DS, whether this is through mis-information or not, then it has to still be her right to terminate, or else you will open the door to criminalizing ALL abortion, which is fine if you are pro-life.

I know this is kinda off topic, but if you (I mean anyone) is going to debate the 'validity' of aborting a baby with DS (which many have pointed out is compatible with life) then you have to ask yourself how you feel about abortion for any reason.

I think we posted at the same time, WWW. Do you mind me asking, why would you - pontentially - want to have a termination if you were told you were at high risk of having a child with Downs?

I KNOW we're on very sensitive ground here, but it's the reasons for terminating or not that I think are at the crux of this. For me, I am fairly certain I wouldn't terminate if given this information. But maybe that's borne almost of a kind of arrogance. I sort of feel that dot1 and I could rise to the challenges that a child with learning difficulties or whatever could present - and in writing that, I'm painfully aware that I don't know the half of what those challenges could be. I don't say I would welcome being challenged like that, but I think we could do it.

Another difficulty is, you want to know you're not going into a situation like this alone, and I wouldn't know what to do if one of us wanted to terminate while the other didn't. What if it threatened to come to a choice between the baby or the relationship?

God, my brain hurts trying to think around this. I hope I haven't caused any offence.

www- no I think you misunderstood what I was trying to say. i was just trying to defend Eidsvold's right to be offended- and to be allowed to say that she found it offensive. I understand that you are entitled to make your decision- and I didn't think you would phrase something like that to a friend's face- exactly why it is hard for Mum's to read in print- be it in the Guardian or on here, wherever.

There are some amazing insights on this thread. Suedonim's post is great.

TBH the worst bit about the article for me- was the woman feeling that her body was disgusting and the consultant telling her her son's life would be ruined. That's just ridiculous. I'm sure severe brain damage destroys families (and I also read the very emotional piece in the Guardian last week Juno). But Down's Syndrome really doesn't come into this category. It's a spectrum condition, so some people with DS have near normal IQ's, whilst others are more affected. However the way I understand it (and correct me if I'm wrong Eidsvold) generally people with DS are high functioning and capable of living rewarding lives.

Now I can only compare it to my family. Eldest child of 4 with autism- fairly high functioning- although we recieve highest rate DLA so the officials must think we have a lot of extra work on our plate. What did we do this weekend? Asides from the usual plyaing in the garden/colouring etc we visited a stately home, visited an art gallery and went for a walk on Dartmoor. Hardly a younger child's life being blighted by his sibling's disability. I would imagine all of the above would be possible with a DS child as well. To bring up a high functioning disabled child you don't really need to be some sort of supermother- these children bring just as much pleasure as their "normal" peers. The situation with severe brain damage is of course different.

I think like others I felt sad that Down's had been so misrepresented. Firstbump had it right- where was the support for the woman to make the correct decision for her?

Juno to be honest the challenges of bringing up a child with a high functioning disability are not that great. Not dealing with the child anyway. They bring you as much joy and pleasure as any other child. The stress comes from dealing with the agencies- health, education and social services.

Thanks for that, Jimjams. Really enjoy reading your posts. And I think the challenges I was thinking of did relate to "outsiders" rather than the child directly. A lot of public services just seem to patchy and underfunded.

Aaaargh - "to" should read "so" there. The thought being, they're patchy and under-funded and therefore either provide a substandard service or require endless lobbying to secure what is needed.

Gosh thisis a hard one isn't it. I read the article and from a person who is not affected by DS or other things I have to say on first impression I was stunned to see how bad a picture the consultant painted!! I felt he was out of order and made sure this women would terminate.

It is odd since in my first pg I had a blood test at 16 weeks and when I asked what it was for I was told to make sure there are no problems in case I wanted termination!! Well this brought me up short, I had no intention of termination and spent the next couple of week deciding whether I wanted this first blood test. In the end I did have it, but second time around I refused.

Both sides of this debate are so valid, and the internet is so hard to put across your points without facial expression. I think all who have posted here have been so careful to be honest also tried not to offend. I hope they have done thier job.

Juno, to answer your question I can't say with any certaintly what I'd do if DS or anything else was diagnosed since I haven't been in that position. I haven't got to 20 weeks yet though, so it's a possibility. I suspect I'd need time to think about it and to talk to dp and I don't think anyone can know for sure until it's happened to them really. If anything though, the article being discussed made me less sure I'd terminiate, which is interesting isn't it in the view of the negativity about the article expressed here?

I know this risks straying offtopic but one of the first things that I thought of when I read the article (and cried) was the late stage of the abortion. I know that this is perhaps because testing is not possible until then but technological advances in caring for very premature babies now mean that the latest date for abortions and the earliest date a baby might survive if born preterm are very very close indeed. I don't think it is impossible that eventually they may even cross.
Does this happen in other countries also? I only ask because I seem to remember that many other countries abortions cannot be carried out after say 12 weeks - do they make exceptions in such cases also?
I'll pin my colours to the mast or whatever the expression is and say that although I'm prochoice I think abortions for whatever reasons should not be carried out so late and that adoptions should be encouraged instead.
I felt very sorry for the woman in the article - but I also wondered if her 'facts' from the medical profession were exactly as she told them or perhaps what she imagined she had been told. I know that often when you get any kind of shocking diagnosis it is easy to mishear, misunderstand or even invent some 'facts' or phrases to fit in with what you want to hear or think you know about a topic. It sounded like after the fact justifications in some cases.

There are two issues surrounding abortion.

Many (most?) abortions are performed on women who don't want to be pregnant/ made a mistake etc.

Abortions following positive test for DS are generally done on women who DO want a baby, but for their own reasons do not want a baby with an abnormality such as Downs syndrome.

Personally I can't understand this, and totally see why Eidsvold could be offended at the idea.

The ginger hair/ bad breath analogy is not far off the mark. I know of one, possibly two women who would have terminated a child they knew would have been ugly and or stupid. ( Their words).

Can I preempt a flaming by saying I am not suggesting all those who would abort a Ds baby would abort an ugly/stupid baby.

i have to say that on the whole the medical profession do seem to push the idea - i had worries of a genetical condition with my first and when i asked about it the answer i got was " its too late to terminate now" .. errr it wasnt what i was asking i was asking if they could tell via scan or expectations or treatments or any information.!

all turned out ok btw

also the expectation i would have an amnio - and the shock when i wouldnt. then the realisation they couldnt do it with twins anyway - but that was much later - and they could have done it by then, told me the results were inconclusive and the proceedure neednt be done

Sorry, can't find a link to support this, but our local paper ran a story last week about a lady who has now got both her healthy babies home. According to a scan (nuchal fold) there was a "high probability" that the babies would have downs. She decided to keep her much wanted babies. A later scan seemed to imply that one of the twins would also suffer from spina bifida. The doctors did not even discuss this with her due to her previous decision to accept "handicapped children".

The reporting showed the positive side of two lovely babies, but implied that if the mother had taken notice of the tests she would have aborted two healthy babies. As it was, she went through her pregnancy and the birth believing that her babies would be handicapped.

morroco, in the state of Colarado, USA, abortions can be carried out as late as 26 weeks without health grounds (mothers or babys). Here is one such clinic that preforms these elective outpatient based abortions. This is well past what is considered the viable watershed held both here and in America.

As for the issue raised by fallah; yes it may be repugnant to abort a wanted baby due to structural and chromosonal abnormalities, but in both types of abortion mentioned the issue still comes down to the quality and direction of life the mother wants to take. I say mother as I do realise that children born with DS say have a better chance of a better quality of life than say 30 years ago, and so I think that it is really about what kind of life the parents want. Many women I have known who have had an abortion do want children, just not at that point in their life, in their circumstances. To me, the womans choice is either the sacred or it is not. A baby doesn't have more right to be born because there is a 'bad' amnio result, even if that baby was wanted before this knowledge was disclosed.

I agree with all those who say that they feel pressured into taking the antenatal tests on offer. When there were problems picked up on my scan 6 weeks ago, I was alone, taken upstairs and the doctor TOLD me he wanted to do a CVS. Panic had set in, I just remember crying, lying down and waiting (although he decided it would be best to return in 2 weeks for an amnio). And I realise that antenatal results don't have to be conclusive. I was told that there was a growth on my baby's spine. Last week I was told that the brain and spine now looked normal and that the amnio had not shown increased Alpha Proteins suurounding the baby. They made it clear to me that a visual or high protein result would indicate that there was an open lesion, that the spine was exposed. This being the more severe form of spina bifida, but really all they have been able to prove is that there is no open lesion and then there is still a chance (though they feel it is small) that there is a closed lesion, the less severe form of spina bifida. I won't know till the baby is born, and indeed unless a problem manifests in later life I may never know. Looking back I wish that I hadn't had all these tests, because the further I go into this pregnancy the more I realise how much I want this baby, and that it simply doesn't matter to me if this baby isn't in perfect help, though I hope it is. And, heaven forbid, if I ever get pregnant again I will in all likely hood opt out of all the tests.

I'm still pro-choice though, including for abnormalites, even if abortion, is not for me.

I may not like what you say, but I'll defend your right to say it....or something like that.

I would like to support www. I have very much the same feelings as her. If I got pregnant again I would have a CVS so any termination would be early. I wouldn't bother too much with the nuchal fold I think, as the chances of chromosomal abnormality is so much higher over 40. I would take the risk of miscarriage too. I mean, this is surely what all these test are for? It can't be unusual to choose a termination in these circumstances eitherwise testing wouldn't be so widespread? It is possible to make a different choice to someone else and still support their choice and wish them every happiness.

just to say I agree with Pie when she states that the issue still comes down to the quality and direction of life the mother wants to take. In my opinion any view on aborting for DS have to be seen in context of abortion in general. Quoting pie again "the womans choice is either the sacred or it is not"

I hate the idea of such late testing for DS and then having the prospect of a late termination. I honestly do not know what I would do if faced with this. No one can say how the news will affect any mother. I admire those who believe they would continue, but feel that every woman must be free to choose.

Also I was thinking the same this as morocco. The writer of this article might not be telling the whole story accurately. It does appear she and her partner were left alone on hearing the news - where was the counselling and adivec they needed? However leaving that aside for a minute, did she get a more balanced view from the medical staff initially? Could they, seeing how upset she was, (she said she immediately wanted a termation on hearing the news) have chosen to support her in that decision. Is that why some pro life counselling was not given to her? Difficult to know where support ends and persuasion or NHS neglect begins.

What you can't doubt is her anguish and guilt about the termination. She sounds like she is still in shock. How difficult then for her to say in that article, I would have been supported by the doctors if I had chosen to go ahead, but I decided to terminate instead.

I've just read the feature and I agree with whoever said they wondered if it was the whole story. She is obviously in huge pain and shock and struggling with feelings of regret and distress... but she does say several times she wanted an instant termination and refused to discuss any other option, even with her husband. I also wonder what exactly the consultant might say he/she said if they were asked to write their version of that conversation? Also maybe the heart defects were pretty severe and extensive - more so than usual? However, I do agree it might have been better had the editor asked her to put in that 30-40 years was an unusually short lifespan for someone with Down syndrome and that few Down syndrome children have severe handicaps aside from learning difficulties. I am quite surprised that the writer did not understand these things, but then again, perhaps she did, but doesn't want to admit them to herself. After all, it's very hard to have a termination like this unless you give yourself the excuse/reason that you are 'saving' her child from a life of pain ( rather than saving yourself). Also, she seems to have a real problem in admitting things to herself, for example the whole confusion about giving the body for research, which was really their 'fault' (in that there is any 'fault' involved) but she does seem to blame the medical staff for not understanding them. It is certainly a graphic and horrific account of a late abortion that I think will put off a lot more people than it will encourage. I would think it would make excellent anti-abortion propaganda, actually.

Aloha- I agree. I think the description of giving birth at 23 weeks in order to kill your baby was horrific. I think her unquestioning belief that the baby would be a bd thing was the thing that horrified me most. I did feel that she was repulsed by Down's syndrome, but without knowing anything about it.

i don't really believe the article comes down to pro choice/anti- abortion at all. It actually doesn't bother me at all if someone terminates an unwanted pregnancy- especially if it is early in the pregnancy. I recognise that there were times in my life when I may have made that decsion. However terminating a wanted child who is then shown to have Down's does horrify me. I've tried to think why that is, and I think it's becuase it comes back to the assumption in society that disabled people aren't quite human. It's not terminating a disability per se that horrifies me- for example the main reason I had a nuchal was because I knew it would pick up anencephaly- something I would terminate for- and I'd rather have that done early that late. But termination for high functioning disabilities does horrify me. It's like someone saying "that child's not good enough for me". And I do wonder what would happen if their next "perfect" child ended up having something wrong- which only became apparent later. We can't pick and choose our children; why should we decide that one particular child isn't good enough for us?

I don't understand this impact on the family stuff. In fact I think it just shows a total misconception of high functioning disability. Obviously severe brain damage (as in the other very moving Guardian article last week) does have a huge family impact- but that's the type of damage that is done at birth- and you can't then send the child back. But a condition such as Down's would probably have less impact on the family that something like divorce- surely? And no I'm not saying don't get divorced. I'm saying what's the impact? I just don't understnad that argument.