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.

Jimjams yes someone did say that to me, he was the partner of my mum (she's dead now so we don't have contact with him anymore). He also said that I should not be allowed to have any more children, and should either be forcibly sterilised or have them taken away from me. Charming. For the first and only time in my life I swore in front of my mother. Saw red, told him my views on him and told him to f* off. What else did he expect me to do?

Janh, so glad we are ok! Don't want to fall out with anyone, just have a discussion. I realise people have a hundred different opinions about any one subject, and would be horrified if anyone thought I was telling them they were wrong and I was right.

Zebra, sorry but i have to disagree. Downs syndrome is just that, a syndrome; a collection of symptoms that presents itself in varying degrees of severity. Many children with ds go on to live independent lives, hold jobs, and many do not. Some also achieve semi independent living.

Like cerebral palsy, there are so many variations it's impossible to predict what the future will hold . My son may never walk, but he may do it with a frame. He only recently taught himself to crawl at 27 months, and that wasn't supposed to happen! He could be as much a "baby" for the rest of our lives as a ds child/adult could be, because he needs so much physical help, but we don't know. I think it's the same with DS.

Eidsvold - funny you should mention twins.

When I consider going for number three I say

"hmm I'd like another baby, but it could have a disability, or god it could be twins." Either would seriously imnpact on our life, and that's the analysis I'm weighing up. I lump the hassle of disability in with the hassle of twins (in fact my friends with twins seem far more stressed than me).

janh- isn't any new sibling difficult for a first child to adjust to though? I know ds1 had major problms when ds2 arrived. I don't see why it would be any different if that child was disabled.

And janh tbh the reason I hate all that "special mother" business is because it reflects that our children are being seen as hassle, and difficult, and sub-human - the kind of "oh he's disbaled but she still loves him" business, rather than realising that she loves him because he's her son. Not saying you're doing that- but that's why I hate it.

The only admiration needed is that we deal with the idiots in education and the medical profession daily- we deserve a medal for that!

and lou- what a revolting man

jimjams, have been following the other thread too but fear I might spontaneously combust if I pay too much attention to it.
Eidsvold, don't you feel that particularly in the light of our little ones fighting for their lives when they were still in the newborn period, this late termination issue seems just perverse?
One baby gets killed off at 23 weeks by parents and doctors due to not being up to scratch, and there we were terrified of losing ours who were only a few months ahead. I don't know, it just seems bizarre.

Also, keep meaning to add that I don't think this baby who was terminated actually had a heart defect. It sounds like he had an echogenic focus, which is a harmless calcium deposit but a soft marker for DS.

Zebra - I will come back to this later and read this whole thread again but I just want to ask if you have a child with special needs?
I also want to say that my daughter is perfect and wonderful and happens to have Down's, anyone who would look at her and think she shouldn't/doesn't deserve to be on this earth doesn't deserve to be here themselves. Nobody could ever call her discabled and no-one should ever call anyone with Downs - disabled, that's just ignarant. i'll take on any problems that may arise with Lottie willingly. I get back SO much more from her than I could ever give. She's an amazing child. I've said it before and I'll say it again, if there was a test that could you could have to predict the future of your unborn child, and you saw that they turned into a drug addict and hated you for some reason or other and never had anything to do with you or were going to have severe depression and you couldn't reach them or ended up with some other illness that they contracted later on in life, would you just terminate that child stright away then? There are no guarantees in life. Can you imagine how tiny the world's population would be if there was a test to detect all the problems that effect people throughout their life and mothers were terminating left right and centre. My sister has OCD and can't leave the house, put the kettle on, answer the phone, gets trapped in the bathroon for hours and hours and hours. She got it when she was 13 and is 29 this year. In your mind would it have been better if she'd never been born Zebra?

I don't, to my knowledge, have a child with "special needs". Is this thread exclusive to SN parents?

Not my place to judge your sister, Thomcat, her rights to existance, or how she impacts other people's lives. If you're asking if I personally believe people should have the "legal right" to termiate based on a high probability of OCD, then I would probably say no, but maybe I don't know enough about OCD. This thread isn't about OCD, anyway.

Either you agree with prenatal screening or you don't. If you concede that termination may be ok in some circumstances, then we argue about whether Downs, or OCD is "severe" or not. Else we argue whether termination is right or wrong. Actually, I don't like arguing. But I have no right to tell you you should or shouldn't take on a severely disabled child, and visa versa. I don't want to argue whether Downs is "severe" or not; in most people's eyes, it is severe. If some of you want to campaign that termination on the grounds of Downs syndrome is invalid, and should be illegal, then I will sit back and watch you fail.

No of course it's not an exclusive thread, I was just interested in whether you were actually a mum to someone of special needs or not so I could get a better picture, I was just interested that's all. Nor is the thread exclusive just to children whose special needs are Down's, hence I can bring up OCD if I want, can't I?
I think that anyone who can use the term Down's and severly disabled in the same sentence is just ignorant of the facts about Down's. Some people who have DS may have severe effects and have health problems etc where as others, like my daughter seem to have Downs very mildly. I'm not being funny / protective or whatever but Lottie could never be called disabled, let alone severly disabled, it's just ridiculous. She'll probably be a bit slower than some other children, but other than that she'll be a normal, healthy, happy child fitting in well in a mainstream school. Who are the 'most people' that think having Down's is a severe disability? I've not come across them but then maybe I've just been fortunate and only met educated people so far, i've come across a couple of people who are still in the dark ages but with a little education they've soon seen the light!

I too was horrified with this story. To me this woman deeply regrets her decision. I am astounded that the medical profession could advise someone to abort a baby at this late stage who had a good life ahead of him.

It is playing God. The daft thing is that in life we err on the side of caution. We don't allow euthanasia even if someone is in terrible pain and will die soon anyway. If someone is injured in an accident we will keep them alive in a vegetative state. We aren?t allowed to ?murder? these people but can ?terminate? a baby who is almost viable and who has minor disabilities. Since when was 20 or 30 years a short life anyway? It is horrifying.

Totally agree about the effect on siblings and others. This seems like a pathetic excuse to rationalise the decision. Children are extremely accepting and probably wouldn?t even notice if a sibling was disabled. They haven?t learned to have bad attitudes. You may as well argue that people who have large families are cruel as they have less attention for each child.

It sickens me the way people decide to have a baby and then back out as soon as something goes wrong. Can?t they take responsibility for their actions?

Even if this was the 'right' thing to do, the whole procedure was handled very badly. Taking a pill? Is this the only way to abort a foetus (baby?) Why couldn?t the ?problem? have been picked up earlier? The child was aborted and therefore not regarded as human but the father wanted to see him and then encouraged the mother too. They humanise him by having him cremated but don?t give him a name. The child seems to have fallen into a grey area of being a baby ... or not being a baby? This makes it very difficult for someone to grieve.

There was a prog on TV last year about a surgeon who performed surgery on babies while they were still in the womb. Very high risk and only a low percentage of success. Yet the thing that struck me was the efforts involved in trying to save these babies. The procedures were invasive and emotionally difficult for all involved. One baby had a very poor chance but the couple decided to have the baby anyway. He only lived a few days after birth but they felt that even this was a life that shouldn?t be denied to him. The mother went through all that pregnancy and labour just for a few days but at least they were able to name him and bury him in peace.

Zebra ? why do you think a campaign would fail?

As for misinformation, tell me then, please:

1. What is the median (50th percentile) life expectancy for a Downs person born today?

2. What proportion of Downs persons born 25yrs ago are currently in paid employment?

3. What proportion of Downs persons have "serious" medical conditions?

4. What proportion achieve completely independent living?

5. Have older siblings of Downs people ever been polled about whether they felt their Downs sibling had a net positive, neutral or negative effect on their lives? I mean an objective poll without sampling biases. What were the results?

To have any meaning, these statistics need to be compared to the same stats in the population as a whole. I bet the answers to 1) is less than 40, the answer to 2) is less than 25%, the answer to 3) is > 50%, the answer to 4) is less than 10%. Which means the writer of the Guardian article would not be misinformed, at all.

A campaign would fail because (unlike most of the thread participants here?) most parents & medical professionals view Downs as a severe disability, and an immense burden on individuals and society. If abortion is tolerated at all, Downs is one such condition where termination will be continue to be condoned.

Why it wasn't picked up earlier...the woman in question described herself as "young"; I suspect if she opted for any earlier prenatal screening, it was non-invasive, statistical blood test. maybe she got back a risk of 1:1700 (or whatever), and reckoned she was safe, but... she turned out to be that one in 1700, and it wasn't apparent until her 20 week scan found soft-markers.

I agree that earlier and definitive diagnostic tests would be a big medical advance. The idea of terminating a 23 week old fetus makes me feel ill, too, regardless of their "defects". The Guardian account made the entire procedure sound absolutely awful. I still object to the undertones of this thread, though. Terminating for Downs is a personal (& difficult) decision. What the Guardian writer wrote was a big mix of all her jumbled feelings and she isn't pretending that all of it is defensible or rational. It's a rambling, powerful personal piece, not an insightful editorial comment meant to reflect judgement on how other society should operate or how other people should feel.

Thomcat-when I used the word disabled in my post I didnt mean a child with Downs. Sorry if this caused offence to you or anyone else Im not very pc

1. the average age at death for a person with DS in 1997 was 49 www.ivanhoe.com/story/p_newsflash.cfm?storyid=3131 Considering that until 5-10 years ago most infants with DS and heart defects did not have surgery, and that surgery success rate nowadays is approx. 95% and always performed, usually resulting in a healthy, normal heart, it is presumed that individuals with DS born nowadays have a near-normal life expectancy, particularly as cancer (other than leukemia) is extremely rare in people with DS.
2. can't find any figures sorry. But really, I am not in paid employment! Maybe we should consider taking drastic measures....
3. How do you quantify this? Particularly considering that people with DS are much less likely to develop cancer, alcoholism, etc, I presume the figure is either similar or lower than the general population. It is presumed that the higher occurence of dementia is mainly due to older individuals with DS having been institutionalised since early childhood, lacking stimulation etc. It is well-known that the occurence of Alzheimer's is lower in the general population in groups of people who stay mentally active so there seems to be a strong link! Will look for sibling studies later. Have seen a few, all of which suggested that siblings felt neutral about their sibling having DS

Zebra because it all comes down to ignorance. In fact statistics show that where parents have an awareness or contact with people with Down's syndrome the rate or termination is quite small.

2under2 I see your point my sister had CF and when she was born 22yrs ago it was considered a childhood illness unfortunatley my sister died last year aged 21 but children born with CF today have much better life expectancy due to all the medical advances.

This link says reaching 60+ is possible. Elsewhere on the site it says 1 in 3 children with DS have heart defects, varying from minor to major. Apart from that there aren't really any serious associated medical problems.

This was e-mailed to me recently

Two Very Good Questions.....

Question 1:

If you knew a woman who was pregnant, who had 8 kids already, three who were deaf, two who were blind, one mentally retarded, and she had syphilis; would you recommend that she have an abortion?

Question 2:

It is time to elect a new world leader, and your vote counts.Here are the facts about the three leading candidates:

Candidate A:
Associates with crooked politicians, and consults with astrologists. He's had two mistresses. He also chain smokes and drinks 8 to 10 martinis a day.

Candidate B:
He was kicked out of office twice, sleeps until noon, used opium in college and drinks a quart of whisky every evening.

Candidate C:

He is a decorated war hero. He's a vegetarian, doesn't smoke, drinks an occasional beer and hasn't had any extramarital affairs.

Which of these candidates would be your choice?

Candidate A is Franklin D. Roosevelt,

Candidate B is Winston Churchill,

Candidate C is Adolph Hitler.

And if you answered yes to Q1, you just aborted Beethoven

This may seem a bit flippant for such a serious discussion, but I though it would show that you can't judge the quality of someones life by a small part of it - such as DS, ginger hair, the ability to walk/talk/hear etc. it needs the whole to be looked at.

This was e-mailed to me recently

Two Very Good Questions.....

Question 1:

If you knew a woman who was pregnant, who had 8 kids already, three who were deaf, two who were blind, one mentally retarded, and she had syphilis; would you recommend that she have an abortion?

Question 2:

It is time to elect a new world leader, and your vote counts.Here are the facts about the three leading candidates:

Candidate A:
Associates with crooked politicians, and consults with astrologists. He's had two mistresses. He also chain smokes and drinks 8 to 10 martinis a day.

Candidate B:
He was kicked out of office twice, sleeps until noon, used opium in college and drinks a quart of whisky every evening.

Candidate C:

He is a decorated war hero. He's a vegetarian, doesn't smoke, drinks an occasional beer and hasn't had any extramarital affairs.

Which of these candidates would be your choice?

Candidate A is Franklin D. Roosevelt,

Candidate B is Winston Churchill,

Candidate C is Adolph Hitler.

And if you answered yes to Q1, you just aborted Beethoven

This may seem a bit flippant for such a serious discussion, but I though it would show that you can't judge the quality of someones life by a small part of it - such as DS, ginger hair, the ability to walk/talk/hear etc. it needs the whole to be looked at.

I could combust on your nehalf 2under2

Right I've been thinking more about this round Tesco's. The reason I felt uncomfortable with this is that people obviously feel that someone with DS has less of a right to life than another "normal" child. And why do they think that? because socity does. Is this why I have very few friends with "normal" children now. Probably. It's just that whole disability = less right to walk this earth that disgusts me.

And where do we draw the line. Fragile X?, OCD as someone has already mentioned. Do we go on physical disability, mental or both? I think as more and more genetic tests become available this is something we will have to sort out as a society. Are we going to book our designer babies ("gene for early hair loss- no thanks swap that one please, and no it must be browm eyes" or are we going to enjoy and love the children we have - no matter what differences they have.

Spontaneously combust 2under2? I think I just have!

Zebra, get a grip. what are you talking about, most professionals and parents, apart from those on this thread, think people with Down's 'are severley disabled and an imense burden on society'!!!! Get out of the dark ages and stop spouting absolute rubbish. On what grounds can you say that 'most parents' and medical professionals think that??? If it wasn't such a riduculous comment I'd be really offened. Is that your view as well Zebra? If it is would you like to come and meet Lottie and call her severly disabled and a burden to society to our faces.

Sorry about the double post. Would like to know

1. Have older siblings of children/people who do NOT have DS ever been polled to see whether the siblings had a net positive/neutral/negative affect on their lives. This could be an interesting one. I do not have a child with DS and do not know of anyone who has. I would NOT terminate a child because they had DS. I do not consider it a severe disability. In the recent past, people would avoid those who were HIV positive, and did not believe they should be allowed to be in contact with 'normal' people. Did we suggest all HIV pos. people should be 'terminated' or did we educate the others so they could understand the condition. We are supposed to be a civilised society, surely this means accepting, and helping, ALL members of that society, not just the tall, blond, aryan ones.

Berries:
That's an old one, been around for years. My answers are:

1. The mother's choice. The world be ok without Beethoven. That's why I dared to stick my nose in this tread; it's about parental choice.

2. You forgot to mention FDR had polio, and would be wheel-chair bound most of his time in public office, dying in an iron-lung when his country was locked in the grip of a nasty war. Not that all that necessarily matters.. .but if you want to challenge prejudices, do it right!

I look forward to many of you all publishing your campaign to abolish the right to termination on the grounds of a diagnosis of Downs Syndrome. And next time somebody in Mumsnet admits to choosing amnio or terminating on the grounds of defects, be sure you don't forget to call her "ignorant", "spouting rubbish", "pathetic", "irresponsible", "misinformed", "playing God" and "prejudiced". Obviously, as parents, we should not be allowed to be any of these things.

I'll duck out now because it's obviously not "my" forum.

-Z (Glad that none of you are Queen of the Universe)

oh well thank god she's gone. Is it just me or is that sort of attitude really hard to be around? I know I distance myself from people who see DS1 as less than human in real life.

Obviously we're not allowed to see our children as children. Perhaps we shouldn't be let lose in society- maybe we should all stay inside with our damaged kids in case they upset anyone by looking at them today, or breathing the same air.

I think zebra's has missed the point though. This thread isn;t about parental choice (I've already stated I've no problem with termination per se). It's about society not valuing disabled people.

I suppose it is only a few decades ago that people were advised to put their children in an institution and get on with their lives. We obviously haven't come very far.

I was going to comment Zebra but actually I don't think you're worth it, especially if you're taking the 'ducking out' route. I don't want to judge anyone, I just take offence to people calling those with Down's 'severly disabled and a burden to society'. I think THAT'S 'ignorant', 'pathetic', 'irresponsible' and 'misinformed'.
I think the world should be grateful YOU'RE not Queen of the Universe, Jesus what a thought!

Not that long ago Jimjams, I was told that about dd1 who is 11!

Ohhh Jim Jams, what an awful woman! I can't beliveve she's for real. She completley missed the point didn't she, I was offened by the disabled/burden but she didn't want to see that. Anyway, good ridance to her, silly *!
Ohh, feel all full of energy and ready to take on the world all of a sudden, think I'll have aproductive day in the office.