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.

Ok jimjams, the grounds for termination for 'abnormality' are:
'there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped' (from ONS website-abortion statistics)

fyi in 1996 there were 85 terminations at 25 weeks or more out of a total of 168 000.

Don't want to upset anyone but have been surprised by some of the content in thread. FWIW I think the medical establishment have moved on, my mum had amnios for 4/5 of her children, the first 2 were 16 and 18 years ago following high risk (1 in5) indicators from routine blood tests. At that time the hospital would only give an amnio if she was going to abort if the babies had DS. The next 2 amnios (8 and 3 years ago) were given because of her age, (42 and 47). this time there was counselling and information offered. There was no expectation she would go for an abortion if the babies were DS.

I think that attitudes are changing slowly, but I'm scared that some of you are so determined that DS should not be seen as a reason to abort. I have worked with DS and other special needs children and have been amazed by the things they and their families achieve. But at the lower end of the spectrum, particularly in families which are struggling already the problems are huge. So while i don't assume that special needs children are a burden I do think that there needs to be some sensitivity to the fact that not everyone wants to have a disabled child and that to me is no more wrong than not wanting a child because you're young, the time's not right etc..

Just to underline that I don't want to upset anyone. i've just been a bit scared by some of the attitudes here. Wish I'd left well alone!

marialuisa - no-one is saying that women shouldn't be able to terminate a DS pregnancy if they choose. The article was upsetting to mother of children with DS becuase of it's representation of Down's as automatically being a severe disability (as you have stated it is a spectrum). And whilst your mum has receieved good care recently- the woman in the article certainly didn't.

Anyway this argument could go on and on. I think that underneath it all there is some common ground- for example I don't think anyone here has been particularly arguing against termination. And I think we all agree that the description of a termination at 23 weeks was horrific- and must have been highly traumatic for the mother- quite awful. I do suspect that we haven't really managed to explain what it is like to have a child deemed offensive by society. If we had then I think you would understand why the article was raw and difficult to us to accept.

Luckily I'm away for a few days now because I could see myself finding it hard to stop responding to this thread. We're off to BIBIC (British Institute for Brain Injured Children) for the rest of the week. I may try to set up a toner cartridge / mobile phone recycling scheme when I get back to raise money for them- so look out if interested. Don't worry I'll talk to mumsnet first- not sure if it counts as business.

I don't think anyone said that a mother shouldn't have the right to terminate her pregnancy. Like jimJams said it was how children with special needs, and that means OUR children, were being refered to. It would be the same if you're child had red hair / feckles / wore glasses etc etc and there ws a thread saying that all kids with red hair were ugly (which I most certainly do not think!!), but it's hard not to take comments about people with DS being burdens and severly disabled etc etc to heart. no-one was upset about this woman, or any woman, terminating her pregnancy. It stirred a lot of different feelings, and with a few of us our ONLY objection was the way that people were referring to kids with 'special' needs. Some people objected to the way the situation with the woman in the Guardian was handled, the method etc etc, but no-one is judging anyone else on the actual issue of termination as such.

This thread is getting a bit personal, which is inevitable I suppose.
Can I just say that when I said my bit about abortions I did say that it was probably not like that for many other women. I do get lots of emails from emotionally scarred women who've had abortions, but that is the nature of my site I suppose. I have yet to receive an email from a woman saying she was completely happy with an abortion and that it was the best thing she ever did. I would not have one personally, but that is my choice and not one I would inflict upon others.

Taking up Zebra's point about the financial burden, my brother gets quite a bit of money from the taxman for his living allowances. But then he also works voluntary. No company will pay him wages because they know they don't have to, it is a Catch 22. He wants to work, but according to the guidelines he can only get paid so much, and many companies exploit people like him as they make out they are doing you a favour. So he gets skivving jobs, sweeping floors, moving boxes, cleaning toilets, the jobs other people don't want. There is also Mencap who do a wonderful job in employing adults with disabilities, and they pay a decent wage to them.

I would much rather my taxes be spent on adults with disabilities than supporting a family of 12 who have just come over from Pakistan. I know that sounds racist, but refugees are more of a tax burden than the disabled could ever be.

Also, as JimJams pointed out, people who have no contact with children or adults with disabilities really have no idea what they are talking about. We are in close contact with such people, we see the benefits and love they give day in and day out, we see what a gift they are to society, if only society would open up its eyes. People are prejudiced by what they read and hear, also because they are afraid of what they don't know. Zebra, with all due respect, you don't talk like someone who knows much about disability. Certainly your views on DS are blinkered. They are no different to any other child on this earth, they smile, they talk, they walk, they give affection, they are able to read and write, and when they grow up most are able to lead independant working lives. They are not vegetables who need 24 hour care.

There are many sections of this society who are a tax burden; old people, single mothers, refugees, unemployed. So why single out the disabled? I myself get working families tax credit, which you as a working person will contribute towards, so that makes me a tax burden too. I really don't understand YOUR point about the disabled being a burden for life.

As for termination, it is the woman's choice. I do feel unhappy that babies are being terminated for being disabled, I think it is a shame that these mothers will never know the love and joy that child can bring. It is even sadder when the pregnancy is planned. But I'm pretty sure that decision is not an easy one to make for the mother and I'm sure no-one here would ever condemn such a mother for making that decision. There was a thread on here about termination after detecting DS, and the mothers on there were a lot nicer than some of the contributers on here. Just goes to show that you have to live through an experience like that in order to have compassion, and compassion is seriously lacking on this thread.

I also think it is poignant that Thomcat feels that she has to apologise. She wrote a lovely post and I wish I could see that much compassion and honesty in some other posts on here. Maybe it does take a special person to have a special child after all.

Well said Rhubarb.

I am going- honest.

Can I just say I read the article again. This time I knew the bit about her body being disgusting was coming up and so it didn't shock me in the way it did on first reading.

On this reading I could see what aloha meant and I did feel for the mother. I think she was badly let down by the medical profession, and I do think she will carry scars. I was certainly far too harsh on her earlier- and it was a raw reaction- mainly at the word disgusting. I feel quite strongly now that putting women through this isn't right. Surely she should have been given some understanding of what the procedure involved before it was started? And as termination is an option surely we should ensure that women are in a position to make that decision as early as possible.

jimjams, I agree about trying to ensure that if a woman is faced with such a decision it should be earlier rather than later.

As you know I was in 2 minds when waiting for my amnio result and I read up on what a termination at 17 weeks (as that was how far gone I was going to be when I got the results) entailed. I was truly truly horrified to find out that unless the baby is small after 14 weeks labour is induced. I can't fathom how traumatic that would be for everybody. One of the things in the article that struck me was the midwife that was almost in tears when the couple arrived at the hospital. I suppose if you work in an abortion clinic the staff are there because they can 'handle' the job, but on a general labour ward??

I know someone in America who after finding out at 23 weeks she was carrying a child with T18 was given the option of a D&C, although she chose induction so that she could hold the baby. I don't know what I would have done in her position, would the thought of a D&C (and what that meant for the baby) or a birth without hope be worse?

Oh thanks Rhubarb, that was very nice of you, thank you. It was a shame that that the whole situation, on the special needs section especially, wasn't handled with a little more compassion and understanding for everyone, again, especially those whose children have some special needs. Oh well I guess I'll have to toughen up and accept I'll come across unkind attitudes now and agin, i'm just not the sort of person that can just accept them and will fight in Charlottes corner to make people realise that people with DS are still people and should be seen that way not labelled as 'severely disabled' etc etc. Thanks for being supportive there though it means a lot. Thomcat xx

Just wanted to say I think we should be mindful that there are mothers on here who have had late terminations because of DS. They are all lovely people and no doubt have their own stories to tell, but I'd hate to offend any one of them, especially since they've managed to keep out of this one so far.

pie- having an induction for a termination on a general labour ward is truly barbaric. I don't know what your labour ward was like, but we could hear everything through the paper thin walls. We thought it was lovely to hear so many first cries- but doing that whilst going through a termination? Hideous. But again this is what I meant when I said elsewhere that humanity has left the NHS (there isn't the money for it).

Your friend in America sounds very brave. I think in that sort of situation it would be better to go for the induction surely. It makes the baby a baby, and real, and in a way a termination for T18 is easier than a termination for DS as there really is no other choice. Of course it would be better still for T18 to be picked up earlier (surely it could be picked up at a nuchal scan?). I think you have to go for the induction in the UK- not sure why that is- I was always under the impression it was safer.

Aagh I'm meant to be sorting things out for BIBIC tomorrow! Someone drown the computer please!

Hmm, good point Thomcat, the sooner we look at children as individuals, instead of labelling them and putting them into groups, the better off we'd all be. No one child with DS is the same, so people with DS cannot be generalised, the same with any disability. Some people see the disability first and the child last.

Wrote that before Rhubarb's post. I hope it isn't offensive to anyone- I really can't pretend to know what a late termination is like. I don't have a problem with anyone's personal decision. That's never what this has been about.

Rhubarb, honestly, I'm surprised you think things are getting personal on this thread. It doesn't read like that to me at all. And while I can understand why you found Zebra's posts to be rather harsh in tone, I think she said earlier that she didn't consider disabled people to be a burden on society herself but that this perception was one reason why termination for Downs would always be legal. When I said that not all terminations cause trauma to the woman, I stand by that totally. I don't think it's insensitive to say so.

Aloha, please read my post again, I answered the one about terminations and will not do so again. When I put that the thread was getting personal I meant from both sides, I was not getting at Zebra. And to be fair she did not make it clear at first that the views expressed were society's and not her own. When people start getting upset then I take it that the thread has gotten personal, even if you don't think it has. When offence has been caused, however unintentional, it does no harm to apologise. So far the only people apologising are the ones who really shouldn't feel a need to.

OK, it's hard to say this but I think it is unfortunate to even appear to play one minority off against another even if it was not meant cruelly or in a racist manner, which I accept it wasn't. If we are talking about tolerance, acceptance and kindness, don't refugees deserve it too?

Ok, I posted before I read your message. And I think I tend to agree with you about the harsh tone. It's hard for people not to be upset on such sensitive subjects - maybe we've all said all we need to? I reiterate though that I'm sure nobody here thinks disabled people are/should be second class citizens or that your children are anything but a joy and a blessing to you and I'm very glad they are in the world and in such loving families.

maybe, but by using their own methods you sometimes open up their eyes to what they themselves are doing. Refugees cannot be grouped any more than children with disabilities can, there is always an individual in there. When you group it is easier to look at the situation unemotionally, but many mothers here see the individuals and that is why they get upset. I was trying to illustrate this, but have no qualms in apologising if this upset you.

We're getting crossed posts Aloha! Is everyone ok to fizzle out this thread?

Thanks for highlighting the article Eidsvold, I think that without the comments on this thread, I would have taken the info in the article at more or less face value. Reading the comments on the thread has highlighted to me - something that must have been very obvious to those who know children who have(including their own) special needs, that there is just a huge need to educate the rest of society on the facts on life for those with special needs.

I clearly, have a lot to learn and would like to thank those of you who have contributed for helping me understand.

Can someone enlighten me? Why aren't later terminations (ie ones that can't be d&c) delivered by Caesarean section? Although the process is going to be traumatic I would have thought that a CS would be preferred by many women.

Incidentally, there was some debate with my ds1 as to whether he had toxoplasmosis (possible fetal outcomes - severe mental retardation and blindness). As a result at my 32 week scan the consultant said after the scan (at which everything had been fine)"of course, if we find anything at the next scan we can still terminate". My dd had been born at 31 weeks and in fact my ds was born before the scheduled 36 week scan.

Some way down the thread, I commented that I didn't think the consultant was that bad. have just re-read the article and the offending paragraph is now leaping out from the page - don't know how I missed it. Yes, he was bang out of line if that is what he said.

It's because although small, the risk of problems is far higher with c-sections than delivering naturally. It can affect future fertility as well which I suppose would be an issue with a late termination.

I understood women are given inductions as that is the safest way to deliver.

Eidsvold - yes I would be interested in talking to the people who started up your group. You can contact me off board at nct dot nottingham at care4free.net Hope that's clear.

My greatest concern I think is how actual support would work and how people would find out about it. Possibly the only way would be to work with the surgeon who now appears to be seeing most of the paediatric cases.

Think, think, think..... I have essays to do. I should put achalasia to bed and get on life, I think One thing this whole experience has taught me is that you never know when your life will change forever so you'd better make the most of it.