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.

eidsvold, yes I read it and I have to say it made feel very cross for families who have downs syndrome children (the litany of reasons why she should terminate etc).

I must say that finding out that it is downs syndrome awareness week next week makes me think it was a very heartless article.

Although the description of her 'birth' was horrific and I feel the woman has suffered terribly.

Is \linkwww.guardian.co.uk/weekend/story/0,3605,966128,00.html\this{} the story you mean eidsvold?

I agree that the Guardian should defintely run a positive story to balance out the impending doom of this story.

In terms of being given bad info by the doctors, perhaps it related more to the actual heart condition her baby had then DS. This lady obviously is feeling a lot of pain and regret over the decision she made. And probably admitting the guilt more than any woman who had an abortion for any reason might feel.

When I was waiting for my amnio results a few weeks ago I read alot about peoples personal experiences about having terminations like this ladies. Even when they wrote that they intellectually felt that they had made the right decision it was obvious that their hearts said otherwise.

I guess what I'm trying to say is that, justifiably, I can see why you are upset, but when I was reading such tales, and having thought that I knew I would have a termination in similar circumstances, reading these tale of loss really gave me doubts about the decision I thought I had made. And I know deep down that I probably, when faced with it, would have had the baby, despite the fact that it could have split DH and I up as he would have been for a termination. The stories of termination simply effected me more than the tales of positive outcomes. I couldn't imagine bringing up a DS child but I could imagine how a large part of me would die if I had a termination. And this terrified me more.

I don't mean to offend you, and hope I haven't. I just wanted to say that the pain in such a story might actually prompt a woman to look at the alternatives more closely. Hope this makes sense.

sorry \linkwww.guardian.co.uk/weekend/story/0,3605,966128,00.html\this{} is the link.

ermm...think I better tell tech there's a problem.

Pie, Guardian links don't seem to work on Mumsnet, something to do with the commas, apparently.

Re the story, I thought it was very moving and I feel desperately sorry for the woman. To me, it seemed there was a massive sense of panic in her reaction and she scarcely had time to breath before having to make a decision. What was the tablet she was given, btw? That seemed odd.

I honestly don't think anyone can gainsay another person's decision on this issue. It reminds me of that famous quote - "I don't agree with what you say, but I defend to the end your right to say it." It's almost impossible to put ourselves in another person's shoes.

I agree that if the Guardian has misrepresented Down's Syndrome, then of course, that should be corrected. And it would be good to see a story to counterbalance this one.

There is another issue that raises itself to me and that is the one of prenatal testing. My first two babies were born in the 1970's when scans weren't even invented, let alone any other testing. You knew that there was a chance of having a baby with problems but it was just a vague concern in the background. When I had a baby in the 80's there were all sorts of things available. I thought this was wonderful, to begin with. When I had a baby in the 90's I had an amnio. It was a time of intense worry and I felt I couldn't let myself go and look forward to having this baby until I had negotiated all the 'hurdles' that seemed to be in front of me. Pregnancy seemed like an obstacle course.

In short, I have been left with the uneasy feeling that the common availability of testing does very little to add to the sum of human happiness. I don't remember anyone in the 70's going through the anguish that I see nowadays, even though we were clueless as to what condition our babies would be born in, and I'm left wondering exactly who is supposed to benefit from testing.

Pie you've put the brackets together at the end instead of one near the beginning, the other near the end.

lou33, both times I put the brackets where they were supposed to be and both times they had moved when I actually posted the message. Very Strange.

eidsvold- I think the worst thing was for the consultant to say that having a down's brother would ruin her eldest child's life. What a ridiculous thing to say! And what pressure on the woman. Especially as recent research has shown that children with special needs siblings grow up "more balanced" than children without. I would have thought having a junkie brother would make lif more unnearable for a sibling but no-one suggests we should be finding a junkie gene so we can terminate those with it.

I felt sorry for the woman because a)she wasn't given time to decide whether or not she wanted an amnio and b) it seemed to be assumed that she would have a termination. The choice she seemed to be given was "you will mess up your life- and your son's- by having a down's child". How utterly ridiculous. I obviously have no idea what it is like having a baby with Down's, but having an autistic has changed my life immeasurably (is that a word)- and dare I say it for the better.

Actually I'm disgusted by that consultant. He wouldn't have been recommending termination for a heart defect- that wouldn't be ruining a sibling's life- so why would Down's ?

I'm getting more annoyed as I ponder it.

Oooh Pie how odd. I said my bit about this topic on the other post in special needs, so won't repeat myself.

the heart condition is probably the same one our dd has as it is the most common heart condition children with down syndrome have. Yes we have been through some tough times with this but after surgery our dd's heart is repaired and working exactly like a 'normal heart'. In fact looking at our dd you would not even know she had the heart condition or the surgery.

I am just annoyed at people/media who add to and continue to feed people's ignorance about any condition or special need ( not just Down's syndrome) and I am a little annoyed that this woman - who seems quite intelligent and with it- did not seek to find out more but rather took the consultant's word as law and seemed to base a lot of her decision on that.

yes pie that is the one.

Well, I've read it and, coming from a different direction from some of you - I had amnio with my 4th child and if it had showed chromosomal abnormalities I would have had a termination - I found it far from a negative view and think that to call it misinformation is unhelpful.

I agree that the consultant sounds to have been brisk and brusque and lacking in sympathy but did you all get as far as this bit?

eidsvold -

Eidsvold ... what a horrifying story ... I can imagine how you feel about it as you have your beautiful daughter ...
I do feel very sorry for the woman though ... she made the decision but she will have to live with this regret for the rest of her life ...

I'm with janh on this. I read the article with tears streaming down my face (being hormonal and pregnant too) and felt terribly sorry for her. I didn't think it sounded like a decision made lightly, not at all - the aftermath clearly still haunts her. Because it was one woman's experience I also wouldn't particularly expect The Guardian to have to print an opposite view at the same time - it wasn't news, it was a first person piece and they're bound to be biased. The consultant did sound brusque, true but there's no way I'd complain about this piece, just as I wouldn't complain about a piece written by someone with a down's baby about why she'd chosen not to terminate. Both are equally valid personal choices imo.

I'm not sure I like feeling that I mustn't say here that I'd terminate in the case of down's. I've certainly felt worried about saying it here recently and yet, if it's my view, I am entitled to it, surely? It's such a deeply personal decision and I wouldn't necessarily expect everyone to agree with me though.

I found her story very moving - there is no doubt at all that she has had a very traumatic time. I disagree about the attitude of the consultant - s/he only came across as supporting her in her decision, which is, imo, the right thing to do.

The issue of abortion for "abnormalities" is always going to divide us. I see on a weekly basis a friend; her younger son has a severe mental disorder and the impact on his older sister is enormous. I would not wish that situation on anyone. I don't know anything really about Down's. If I was told a baby I was carrying had Down's I would need lots more information in order to make a decision. I hope this lady had all the information she needed, and that she is being fully supported.

I can appreciate where you are all coming from and can appreciate the position the woman was put in (having been there myself - except ours was dd and no1 child/grandchild etc) but it still seemed such a short time between the news and the decision to terminate. I too was at the point in terms of news - being told of dd's heart defect and the high probablility of Down's syndrome - and no family support - just dh and I. However - we felt we had to make informed choices.

Aside from this - I just think that we as woman need to take more control of our pregnancies - yes it can be frightening and hormonal and so on BUT we owe it to ourselves and our babies to take a more involved and educated approach to our medical care and care of our chidlren pre and post birth. I don't know about any of you but I felt as though I was to take the medical professional's advice/information as 'gospel' and not seek out further information for myself. In fact - had a few situations where it seemed to annoy the particular medical professional that I had further information and sought to discuss things rather than just accept what they were telling me.

I know that other people put in our place might not make the same decisions but I do think the article was misinformed and to attribute information such as - people with down's syndrome only live to 30 or 40 and they never achieve independence to a medical professional is just adding to people's ignorance.

I don't think it was 'misinformation'. They were just publishing an incredibly honest and frank account of one woman's experience. I read it and had tears streaming down my face.

I do think it would be interesting to read a story from the 'opposite' perspective but I didn't feel the Guardian were making any negative comments about Down syndrome by publishing it.

also meant to say that there is an article in the Observer today which leads with:

"People with Down's syndrome have proved they can lead full and independent lives... The real challenge they face, says Sophie Radice, is overcoming society's prejudices "

www.observer.co.uk/magazine/story/0,11913,967965,00.html

I think Judetheobscure has hit the nail on the head really- a lot of information is needed to make the decision. It doesn't sound like the lady received the corrrect information- sounds all very 1950's to me. I don't believe having a special needs child - with a condition such as Down's is a disaster for a sibling. There are other conditions that would be far more difficult for a sibling - and some of these would not picked up by an anomoly scan. For example if a sibling had to cope with their brother or sister having something like liver cancer, which required long term specialist treatment far from home- that would be far more disruptive.

What makes me very uneasy about all of this is the assumption the medical profession make that on discovery of a chromosomal abnomality such as Down't that termination will follow. I had a fiend who had Down's picked up at an amnio and she had to cancel the theatre 3 times! It kept being booked. And for a consultant to tell a woman raw with shock that it will runi her other child's life- it's not right! How could she have made any other decision? Unfortunately for her I'm not sure she has made the decision she really wanted to. Very sad indeed.

Suedonim rasied interseting points as well. It;s very important I believe now to know what decision you will make given different results, before testing. Especially given the medical professions apparent assumption that Down's = termination.

I 1000% agree with Eidsvold when she writes this :
Aside from this - I just think that we as woman need to take more control of our pregnancies - yes it can be frightening and hormonal and so on BUT we owe it to ourselves and our babies to take a more involved and educated approach to our medical care and care of our chidlren pre and post birth. I don't know about any of you but I felt as though I was to take the medical professional's advice/information as 'gospel' and not seek out further information for myself. In fact - had a few situations where it seemed to annoy the particular medical professional that I had further information and sought to discuss things rather than just accept what they were telling me.

I am a birth doula to a woman who has refused all pregnancy tests... she has a lot of amniotic fluid (which can be a sign of downs) - the OB was very surpirsed (not in a nice way!) that she had refused all tests....

pupuce- my friend who had to unbook the theatre 3 times was treaetd pretty appallingly by mediacal staff when they realised she intended keeping her Down's baby. It made me think very hard about antenatal testing. Up until then I had accepted tests as I wanted to know- although I knew I would keep a Down's baby. Realising that you might have to be very strong to avoid a termination has made me think again- or at least be very clear on my decisions given certain results.

Gald your client has you to support her. It can very hard to go against medical opinion- especially when pregnant.