Oh Gosh - I never realised this...

[pagwatch]

I saw a thread about a pregnancy with the possibilty of the chid having Downs syndrome. Don't normally click but thought the posters was looking for some support re liklihood of having a child with issues.
Anyway she is going to terminate - which of course is her choice.
But someone gently asked if she had considered the possibilty of keepingthe child and the responses were really aggressive. Then others joined in and it just seemed unessesarily hostile.
Being really dim I added that I didn't think the question was out of order but just that as the parents of children with disabilities we may have insight/knowledge that might be useful
Apparently that is grossly insensitive and terrible

Now if a woman has made up her mind I would never dream of commenting. Thats that.
But is it really outrageous and terrible and shameful to ask the question? As mothers do we not have insight into the very thing that a pregnant mother in these circs could draw on whatever her choice may unltimately be?

I was just so shocked by the hostility. It was as if the very mention of our children was offensive.

I am just going to hide that thread and avoid that topic. But the attitude was grim.
I know this is a thread about a thread but clearly cannot addthese views on there - especially as I have no doubt the OP is having a terrible time and i would not wish for a second to add to her distress. And please plaese please do not go to that thread - I am honestly not trying to shit stir - just trying to come to terms with the attitude.
So I put it here where I am hopefully amongst peers ( I very much doubt that any of the shouty contributors would have anything to do with the SN board)

Just made me glum in a way I haven't felt for a while. Thanks for letting me vent
Now please tell me why I am being foolish to be upset. Because it fely like being shameful, second class or something

I think you're right SJ and that Riven is right too - that no proper debate is allowed. Obviously its a sensitive, tricky subject, but I feel like our voices are 'silenced' - which sounds dramatic - but thats how it seems.

I suspect that most posters don't want to know about the reality of life with a child with SN as they have their preconceptions and in a way it makes those awful decisions easier for them.

Which then makes me feel horrible because I know people agonise over their decisions, but I really think they are not given both sides - either at the hospital (earlier poster saying staff amazed she doesn't want to terminate) and on MN.

I'm reminded of the study that showed that parents who were introduced to children with Down's syndrome were far less likely to want an abortion than those who were only told things by their doctor. It went from 90% abortion to 62% in one study. Shows that a lot of people's reactions are based on ignorance and fear, not on fact.

I did have a breif look, noseyness won.
I wish people would realise that you can't test fro everything

I totally agree with Riven's post above, I haven't had the guts to actually say it myself, but that is exactly what I think and what I find so unsettling, along with the assumption that having a child with SN is unthinkable.

I work at a Neonatal Unit, and tragically I sometimes see the parents utterly overwhelmed by the death of a much loved baby. And to somehow compare the other issue with this seems so very wrong. Just my opinion.

I agree with Riven too - there is a lack of honesty about what is happening and a pretence that the parent is the victim of circumstances that could not be avoided. But I think that gets back to the defensiveness/hostility emotions - because deep down, they know they are being dishonest and this makes them hyper sensitive to any comments that reminds them.

Not sure Riven. Most of the people I meet - not all of course - fight for their baby with every ounce of their being.

As I and my dh did 8 years ago. Knowing the brain haemorrhage would lead to disabilities. But knowing we loved our dd more than anything else in the world.

Above to Riven's post one before her last

I don't read those threads any more and I don't have a disabled child but the attitudes on them just annoy me.

But I do think that a lot of it comes down to fear, and guilt.

Generally people tend to terminate pregnancies due to disabilities because (in the words of so many on such threads) they could not cope with a disabled child.

So being told that others do cope quite normally with their disabled children must lead to a sense of inferiority perhaps? Or a sense of guilt that others can do what they feel they cannot, thus meaning that if the child had been born to someone else, he/she might have lived, but instead he/she has to die because they wouldn't be able to cope. If that makes sense?

And of course there is the element of not wanting to know.

I did dip into an ambio thread the other day as poster was worried, and pointed out that for every two babies diagnosed with downs, three unaffected babies were miscarried, and was promptly jumped on and dismissed as talking rubbish.

I will confess that on the threads where the poster has had a high-risk result, has said they will terminate, and then celebrated when the amnio has shown they are having a "perfect" baby, that I have thought that it would be carma if the baby ends up with an invisible disability.

I've sometimes wondered that too Wannabe - How they react further down the line if something undetectable becomes evident. Actually I am sure they cope as well as any of us do, but people who don't know that want to pretend that parents of SN children are a different species and that no normal/ordinary person could really cope with SN. I think it must be very hard though if someone says something slushy about unconditional love and you know deep down that you have set limits and conditions on what you want to love.

I am pro-choice. But I think it would be nice for people to recognise that if they choose to terminate, for whatever reason, they are actually exercising a choice. But as WannaBe says, it's about guilt.

What gets me is that it seems to be different in the case of disabled children. Someone who has chosen to terminate because she is broke, in poor health, depressed, carrying the child of a married man, won't usually get very offended by meeting people who have had their children under those circumstances. Then again, I suppose if you post that you are planning to terminate under the above circumstances, perhaps fewer people will pop up and say "have you considered keeping the baby".

I don't know. But somehow, we seem more uncomfortable with the issue of disability.

And standard health procedures don't necessarily help either. My perfectly sensible and supportive midwife looked quite taken aback when I pointed out that for a woman of my age, my foetus would be statistically more likely to die from the amnio than to have Downs syndrome. And that was before I even mentioned that I wouldn't be terminating in any case.

I think that outsiders (DS2's SN are mild so I'm never sure if I'm an outsider or not frankly)do struggle and have a lot to learn. When it comes to downs, I think people, especially younger people, are not surprised to think of a person with downs as having a good sense of humour, kindness, etc.

But outsiders still have a lot of assumptions about the role of the person with SN in family life. It doesn't surprise people that my cousin David, 32, with downs, is a nice person. What surprises people is that actually, it has been David who has supported his parents and siblings through life's troubles and tragedies (his sister died of cancer, his brother has been stricken down with depression, his other sister finds it very very hard to cope with her infertility). When David was born, the adults all assumed that the support would be one-way traffic in David's direction and the truth has been so utterly different. I don't know how my auntie and other cousins could have coped without his support.

Thanks for posting this Pagwatch. I have an 18 month old dd who has Down Syndrome and i've just found out i'm expecting number 2 so i've been having a look on the prgenancy bit and there are loads of threads on there about this at the moment. Stupidly i've read a few of them and most of the comments on there have really upset me. I have been very close a few times to posting that my dd has Down Syndrome and that she is healthy, beautiful, funny, clever and the best thing that has ever happened to me! But I'm not keen on confrontation so have just kept my feelings to myself.

I am now completely avoiding the pregnancy section as it is not good for my stress levels.

Its got me thinking though about how to change the perception of Down Syndrome. Before I had dd I would have been frightened at the thought of having a child with DS but the reality is so far away from that. Part of me blames the nuchal test and the companies that offer it. I've had a look on the website of a place that does it by me and its very derogatory towards DS. I wish the companies that offer these scans would give people a more realistic view of having a child with DS. Unfortunately I should imagine if someone is given a high chance the discussion would focus on termination. Needless to say I won't be having the nuchal scan this time around I am happy not to know. I didn't have it with dd and i'm very glad I made that decision.

amester I just wanted to say good luck with your pregnancy and unless you really want to don't post on the threads as you are right in general you will probably get shouted down and as I discovered it really is very upsetting.

The syndrome my DS2 has has very similar traits to downs syndrome and it has opened my eyes to the fact that you can have a fulfilling life with disabilities of all kinds, and that as parents of a child with a disability/syndrome that life is still good.

It is a sad reflection though that we feel that we are unable to communicate our positive experiences of raising a child with disabilities.

Good luck with your pregnancy I expect your DD will be very excited to be a big sister.

If I have to be perfectly frank, I don't know how I would have reacted if I had been told beforehand that both my children were inheriting a condition that meant they would be partly disabled and suffer pain on a regular basis. I might have found it difficult then to have shrugged my shoulders and gone "tough! they're just going to have to get on with it".

But in RL, this is what I do. "Tough, you're just going to have to get to school now". It's not ideal, but it's a damn sight more ideal than not being here at all.

The thing is, when you actually have the disabled child, you see all the compensations, not just the disability. Dd's intellect and imagination will compensate for an awful lot of pain. Ds's friendliness will help to make up for possible lack of mobility. And their sheer enjoyment of life makes up for a lot. But you can't see those things on a scan.

So maybe I would have let myself be swayed.

Hey Amestar - I'm pregnant too and also finding the pregnancy board a bit much at the moment - we can hang out here. . I'm going to say something that I can only say here... I didn't have the nuchal with dd2 has knew already how much we loved her, whatever. As it happened she has cerebral palsy, something no scan could have predicted. Now I'm pregnant again and again didn't have the nuchal - and do you know what? there is a part of me that thinks, if there's a babe out there with SN then please God give it to me. We know the system, we've adjusted to our whole lives being different, hell we've even got the mobility car - we're ready and waiting. And should this babe end up with no problems too, that's great but you know what? I love this child with all of my heart and soul and whatever will be, will be.

FioFio - glad to hear re your friend's son. My dd1 was also a 27 weeker, and she had a grade 4 brain haemorrhage. She does have a lot of lot of SN issues (cp, hydrocephalus, epilespy, VI, global delay, ADHD). I am so proud of her, and also grateful to the input of the physio, SALT, Consultants, plastic surgery consultant who does her botox (legs and wrist!!) etc etc.

8 years on, and I work at the same NNU dd1 was cared for in. (Have done for 5 years) I am so grateful for the care they gave dd1.

Hangingbellyofbabylon whta a brilliant idea(not that I would be posting as the days of growing babies are long gone for me) but you could start a support thread on here and be able to chat away knowing you were "safe"

My personal opinion is that there is far too much testing.

Years ago there were no scans, no tripple tests, nothing, and if you happened to give birth to a child with a disability then you just got on with it.

Now we have tests and options and decisions and in reality if most of the people who terminate their pregnancies for disabilities didn't know they would probably still just get on with it and be fine.

I know someone who has recently had a baby with a cleft pallet which wasn't picked up on her ultrasound. She said that she's actually glad that she didn't know beforehand, as she would not have enjoyed her pregnancy as she would have been worrying too much.

I read the thread but found it quite strange. Why would anyone recommend a book about late miscarriage/neonatal death to someone who chose a termination? I suppose it gets back to Riven's point - that they are just trying to muddy the waters and pretend that reality has been tweaked into something that it isn't.

Thanks slightlycrumpled. Your right I won't post on any of those threads - just going to make sure I don't open any of those threads. DD will make a lovely big sister - really excited for her!

Congratulations to you Hangingbellyofbabylon how are you getting on with your pregnancy? Thats a good idea to have a chat over here - maybe we could make a special pregnancy thread on the SN section

Oh heck don't know if that sounds strange, for clarification I didn't mean special as in special needs pregnancy just meant it as in a dedicated pregnancy thread.