Ignorant/Infuriating Guardian story

[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.

Just read it Eidsvold. Undoubtedly emotional, but I think thoughtless and tactless. I don't think the author has thought about the effect this will have on readers, and the Guardian should have been more responsible too, at least putting another point of view. I'm glad you wrote to complain, well done.

i had not read it as I had been out this morning but when dh said he was writing into the Guardian I knew it had to be bad. He is the calm one in the couple. I feel as thought the woman wanted someone to say that is was right what she did and I am afraid I can't do that. I am sure there are plenty of people out there who would have done exactly the same thing in her place and would think it was okay but sorry - not me.

Well I can understand she was probably in shock and had little time to think things through, but one of the things I objected to was when she said she was averting a tragedy. I just can't see how any child could be classed as a tragedy. Maybe I misinterpreted it, but to me it's how it came across. I think she had this huge panic and didn't give herself time to decide clearly and properly, and I think that comes across in her writing. Still very surprised the Guardian didn't give another pov. Really sad.

I haven't read this article, but I do know someone who terminated a baby for Downs and regretted it. What I find strange is that she had the termination the day after the diagnosis (by amnio). I would think that it would not be something you could decide immediately as you would be in shock. However, I also don't see how you could force someone to have counselling or take longer to decide, both of which may possibly enable the mother to make a different decision?

Written more in the in the news section- but was pretty disgusted- mainly by consultant. I suspect termination may well have been the wrong decision for this woman

you right Lou she said she was averting a personal tragedy...

CAM I think the medical profession assume a down's result = a termination. I have a freind with a Down's baby and she had to cancel theatre 3 times. She was treated fairly horrendously when staff realised she intended keeping the baby.

I guess it all comes down to the public image. Generally Joe Public imagines that having a disabled child must be the most appalling thing. Our children aren't "normal", they must ruin the family's life, they just take and give no pleasure. When of course we know the reality to be totally different. It all comes into this ridiculous "you must be special parents to be given a special child" crap (pass me the sickbucket). I don't think it's understood that we enjoy and love our children as much as a parent loves their "normal" child. Therefore we don't need to be special! I sometimes think that people undergoing termination for a disbility compatible with life- especially something like Down's - which is a very high functioning disability- don't realise that the child they are terminating is as much their child as any "normal" children they have. And that that disabled child would bring as much pleasure as any "normal" child.

I think the way she described her body as "disgusting" showed that her view of Down's was totally negative and unfortunately ignorant. Very sadly she wasn't given the correct information.

I know people are upset with you on the other thread Eidsvold, but I do know where you are coming from. I think that people down't realise that for you to read about that is like them reading that someone decided to terminate becuase they didn't like something specific about their child (I don't know- ginger hair, glasses, eczema, lisp, hitting other children, whatever).

It does upset me actually that society thinks it is OK to terminate for Down's. I will say here in special needs that I don't think it is! I won't say that anywhere else on mumsnet because it upsets too many people- but I will say it here in "our" forum. I feel sorry for the people who do it though- because I suspect so much of that choice comes form misinformation that if they were ever to end up in the special needs world for whatever reason then they may find it hard to live with their decision.

The funny thing is I'm actually pro-choice , and people terminating a wanted baby for Down's actually upsets me more that people terminating an unwanted healthy baby. Maybe it's not the termination itself but the fact that society thinks it's OK to do that- or even that society thinks that is the wisest decision. What does that say about society? We haven't really moved on since the stoneage have we?

Hope the Guardian publish something more positive!

Jimjams I have to agree with what you wrote. I don't think termination is ever a easy option, and is always hard to come to the decision to abort. However there were certain phrases in the article that had me concerned, such as seeing her body as disgusting, and averting a tragedy. It's extremely sad that she felt like this, but incredibly insensitive to think her comments would not cause pain to others. That's why I think they should have put another viewpoint to balance it out. It doesn't exactly help the way people view and react to special needs kids.

Sorry would post more but I have the worst headache today, woke me up at 3 am and was sick with it this morning.

Still pondering this. maybe inclusion (if funded properly) will make a difference. I used to think that spina bifida must be a terrible terrible thing- until I met someone at school with spina bifida. I didn't even know she had it until someone told me- I thought she just had a bit of a limp. I knew then that I would never terminate for spina bifida because it could just mean a limp- and you can't tell severity from the scans. I could never take that risk.

maybe our generation of children will grow up with positive role models of disability?

I know plenty of people who think autism must be a terrible thing until they meet ds1- then they can't believe he is autistic. His behaviour doesn't begin to match the image they have in their mind.

just been able to log on again after battling with BT for ages - wow, what an article! (For those of you who don't have the paper copy, 'treat' yourselves to it at www.guardian.co.uk/weekend/story/0,3605,966128,00.html ). I found it absolutely appaling - the outdated offensive attitudes about lifelong misery particularly stung. We have two beautiful girls and are looking forward to our third child. Life is really good and we are a very happy family - yes it was hard at first when dd with DS was tiny and sick, but apart from a few health niggles now all is well and dh and myself are genuinely happy and content. My older daughter also does not seem to have a ruined childhood so far! I doubt that her life would have been improved if we had killed her little sister.
I am really cheesed off with the way this woman seems to be throwing her own personal pity-party in the Guardian, showing her foolishness by basing her decision to terminate on one consultant's outdated opinions.
What really scares me is that who knows how many people are out there like her, thinking that dd is an unfortunate, disgusting mistake that should have been eliminated in utero? Dd, who is only 2 but seems to be a kind, sweet-natured person, who if I have it my way will grow up to appreciate the variety of human existence, is obviously far superior to people like her .
Ok, can you tell I am cross?

2under2- look in "in the news" if you dare!

I know people will not agree with me and hey - that is their right but I am with you Jimjams - to terminate because of downs makes me wonder where it stops... as you said - what is to be the next 'unacceptable' condition/feature.

it makes me so angry that people are so ignorant and are happy to stay at that point.

I think what summed it up for me was dh's reaction... I am really the crusader one who takes things very seriously and tends to get'preachy' at times about all sorts of things but my dh who is so laid back and more tolerant( for want of a better word) was sooo steamed about it.

I agree - it makes me wonder what sort of society we are creating here - on theo ne hand inclusion and anti discrimination, human rights being very important issues and on the other - oops sorry could not imagine having a child with down's syndrome - so have to terminate.

I am not sure about anyone else but I really felt like she had made up her mind and now is surprised by the guilt she feels. I mean we can be mad at the medical profession for not being as forthcoming with appropriate and balanced information but I still think the buck stops with them.

When dd's heart defect was first spotted - it was incorrectly diagnosed as something even more serious than what she had... so we sought to find out as much as we could from people who would know - parents and others who had been in our position. Then we made our decision based on as much information as possible. Mind you after being told she had a different heart defect it was back to the research.

Enough said...

Jimjams again we seem to be in agreement. When I was younger my biggest fear was having a child with hydrocephalus (I had seen pictures in a book aged about 13 and it really scared me). Guess what happened? I went on to give birth to my first child who lo and behold had hydrocephalus. This wasn't picked up in the scans I had, or her 2 heart defects. If they had been I would have been strongly pressured to have a termination, as it was when she was only a few weeks old I was being told there was no hope for her, she would be a vegetable, blind and deaf, and to put her in a home and not bother about her. I bet anyone a thousand pounds now to be able to distinguish her from any other "normal" child. Sort of proves the point that all children are individual doesn't it? A syndrome is just a collection of various abilities/disabilites/conditions/symptoms (choose whichever phrase you prefer), they will all be varied in the degree affected on an individual basis. Bit like all children really. Now I have a 2 year old with cp, the type of cp that kids used to name call years ago (and we still hear today); spastic. There is a lot of almost revulsion towards people such as my son, because his condition in the past has been made out to be all things bad, but it is fear and ignorance of conditons that cause it.

Fear is a powerful thing though, it can make behave in a way you might never think you would. I just can't see how this woman, or anyone come to that, could or should make such a huge decision in such a short time. Where was her support? Why was she allowed to go ahead after making a decision on such a short time? Why wasn't she sent home to think things over and do some research?

I hope the Guardian prints some of the responses it will receive from this article and do another story , maybe Eidsvold could do it!

I am not sure I should equate having a child with special needs and vaccination.... but I will (risk of creating a heated debate here !!!)
I feel vaccination for SOME of the diseases we vaccinate against are to make life (of adults) easier and more convenient for people.... And before I hear you say that you can die from some of these, you can also die in a car crash, from a household accident,....

People are misinformed, do think they want/have the perfect child and can't believe they could ever live with themselves or their child if it caught any of these "horrible" diseases and was scared for life.

Not sure this makes sense... had a glass of wine with lunch !

pupuce I can understand where you are coming from, in fact one thing that sticks in my mind is something a friend said to me when I shared about the heart defect ebing picked up... she knew we were going to have our baby and she said... if her dd ( 4 y.o.) was in an accident and was disabled through that accident, she was not going to take her back and say sorry I don't want her anymore... I sometimes get a bit bolshy and challenge people with that when they are surprised that we had dd knowing what we did before hand.

you are right Lou - it is fear... not sure about you but at first we were terrified - more so for how we would cope and how other people would react... that fear was as you said - born out of a lack of understanding and information. Once we had that we knew we could cope with anything....

and thank you all for understanding why I was so upset at the article.

Eidsvold this may sound strange but initially I felt a combination of dazed and vindicated. It's a bit complicated, but we had no idea there were any problems with dd1 until she was born. They picked her heart problems up at about 3 days old, confirmed at 10 days. This was something we were worried about but ok iykwim, because it had been detected and diagnosed very quickly, and the thought of her facing surgery was in our minds a good few years away. The hardest part was trying to get the doctors to take me seriously about her head. She was about 8 weeks old when I started to get concerned, which also coincided with suspected heart failure, so we were in hopsital for obs. Basically I was treated like an over anxious first time mum who didn't have a clue. Luckily my persistant nagging annoyed someone enough for them to order some tests, through which they discovered dd's hydrocephalus. From then I have to say the hospitals were very good, but it was so difficult to get them to do anything at first. A bit off thread sorry.

The thing is fear disappears when you confront it, and find out more about the topic. I feel for the woman who wrote the article in a way, she seems to want someone to convince her she did the right thing, but isn't sure herself. She will probably be forever wondering if she did now, especially if she sees lovely children like yours and Thomcat's, and my nephew.

pupuce I have one word to say to you.... chikenpox! (or should that be varivax- available on the NHS soon)

Thanks beetroot

I know
As if vaccination was the answer to everything........................
Why can't we accept differences - that's what makes us interesting !

ah but jimjams - varivax is great For adults...

Ok, deep breath.
I read the Guardian article (the online version, anyway). I liked it. I'd like to know which bits of "misinformation" it contained. How in the world it provides an "unbalanced" view? It was one person's personal experience; moreover, it made the story of termination & ongoing grief extremely unpleasant.

I don't see how any of you can argue that another person should be willing to take on a severely disabled child. You have no right to impose that on others.

phew, zebra! Right then, for starters children with DS do not have a severe disability. Children with DS usually learn to talk, read, write, are potty trained near the 'usual' age, some pass GCSEs, driving tests etc., most have a job as adults and make a useful contribution to society. It is not something I would call a severe disability. My daughter is disabled by other people's attitudes, not by herself.
What was particularly disturbing about the article were the untrue 'facts' given to the woman by the consultant - e.g. people with DS have a much higher life expectancy nowadays. The lower life expectancy was due to the fact that many individuals with DS are born with heart defects. These weren't repaired in the past due to prejudice and lack of medical advances. Nowadays, with heart surgery for infants being relatively low-risk and antibiotics readily available, people with DS have a life expectancy similar to that of the general population. Also, it is extremely offensive (and also ridiculous if it wasn't so irritating) to read all the bullsh*t about how your child having DS will make everyone miserable. From personal experience it couldn't be further from the truth and I have yet to meet a family who have a child with DS and are miserable. I know miserable people who whinge about everything but it tends to be those who fail to be able to see the big picture and appreciate life. Somehow, having a child with special needs does seem to give people a broader outlook. I know adults who have a sibling with DS - have known them for years before dd was even a twinkle in my eye, and they were always proud of their sibs and happy to have them. Not living a life of misery.
Many people with DS do achieve inpendence or at least a good degree of indepence - it doesn't mean they always want to live with their parents, but for instance means that once a week someone from social services or whatever comes over for a chat and to help with paying bills and balancing the cheque book. I think there are worse things in the world.
And then, lastly, who is saying that this baby was thrust upon the mother? Wasn't she there when he was conceived??????? I think some women need a bit of a reality check - getting pregnant is not like putting in an order with the Next Directory, and if something is not how you expected it you just send it back and ask for a new one.

well yes -2under2 said it really. I don't think having a child with DS is "taking on a severely disabled child". For starters they're not severely disabled. It is a spectrum condition and those at the able end of the spectrum have near normal IQ's. Even those more affected could hardly be described as "severely disabled".

Secondly you're not "taking on" anything you're givng birth to a child that you will love every bit as much as any "normal" siblings they have. How can that be seen as "taking on" anything.

Misinformation: Life expectany of 30 or 40, the ridiculous ludicrous comment about it runing her eldest child's life, never being able to look after himself, likely to have serious medical problems all his life (lets terminate all children with heart defect shall we?).

Zebra I suggest you read the positive article about Down's see other thread in special needs- so that you can correct some of your misunderstandings about the condition.