Ignorant quetion, and not sure how to put this tactfully, but why do people not want to have a baby with DS?

[LesAnimaux]

I don't want to offend, or be flamed, but I am curious.

I've seen several threads where posters have terminated a pregnancy when they have found out their baby has Down Syndrome, and then gone on to ttc a "normal" baby.

Now, I don't personally know any one with DS or any parents of children with DS, so I genuinely don't know the difficulties they face. Is life with downs syndrome really so bad? Or is it the thought of a child growing into an adult with SN and having no one to care for them when the parents are no longer capable?

Out of all the things I worried about when pregnant, downs syndrome wasn't one of them.

I see what you mean now, devient. I wasn't even thinking of the stress element, more, the mechanics of the situation.

What a horrible situation you were placed in with the child whose existence was threatening your life.

God, sometimes life is just awful.

Ginger some people with DS do lead fairly independent lives. When I lived in a larger city and took the bus to work, one of the stops was a group home for people with DS. It was sort of like a college dorm; they all lived there with one resident person helping them if they needed it. They took the bus to work; I believe most of them were employed at one of the inns downtown.

Devient I'm very sorry you're having such a rough time. :(

What an awful and unhelpful thread this is. I can't believe that so much of what has been written has in fact been written, when the decision to and process of terminating a very much wanted pregnancy is so horrendous. For those that have, it is an entirely selfless act in all the cases I have read on here; for those who didn't, another selfless act based on a slightly different viewpoint and circumstance and for those who are so fortunate to have never been placed in the worst position a mother could ever face- well, "there but for the grace of God", for you have no idea.

I was in that position 3 months ago when I made the shock discovery that my daughter, Ava, had Edwards syndrome and a severe heart abnormality. If she survived birth she would have probably lived for minutes. I was 26 weeks and none of the scans (I had paid for extra- so I had 6 in total), NT or combined tests and picked anything up before then. Ginger I was given a risk factor of 1:189000 for Edwards. Ava'a condition was only discovered late on due to the heart abnormality and growth patterns which could have only been detected so late on. Given this knowledge all preconceptions as to what you would do if....... Disappear. Because all you think about is what you think is best for your baby. And no-one has the right to judge anyone on here, whatever decision they made, for whatever diagnosis.

Deviant , I'm sorry, I must have missed your post too. I'm so sorry for the loss of your baby and for the struggle you are having with your son. I hope you understand (and I think you do) that my decision was in no way a personal attack on people with DS. As I've previously said, I can understand if some parents of children with DS interpret it this way, but all I can do is stress that that is not how I feel. I do hope you get the support you need/deserve.

ThefirstMrsDeVere , I'm not sure in what context your "Seriously?" was. Whether it was as in " Seriously, if you want to know what I think..." or "Seriously? Interesting...." OR "Seriously? That is why you terminated?" (in which case I would consider myself to have been judged).
Either way, I do get what you are saying for the rest of the post. I was just making a point that there are many reasons people choose termination, even despite 'similar' (ie losing a child) history. I say 'similar' as I don't compare the way you lost your DD (I remember a powerful post of yours back from that chicken pox thread with SS - what a horrible thread that turned out to be), to my DD dying suddenly and painlessly. The point I guess I was REALLY trying to make is that people make decisions based on not only their experience, but their perspective of their experience, and no one has a right one way or other to judge that. I'm hopeless at getting my point across sometimes, but I hope you understand what I'm trying to say.

I was also quite surprised to see this thread over here. It wouldn't exactly be what I'd consider to be supportive for anyone going through testing. I remember reading, against my better judgement, discussions of this nature when I was trying to decide what to do (though they were much more inflammatory), and all they did was cause more despair and confusion than anything. My last post here, when taken out of context, sounds anti-DS, which it wasn't intended to, as I'm not. I was just responding to previous posts that seemed to simplify DS as a 'mild learning disability', and stating that, while it can be such, this isn't always the case. I certainly wouldn't have posted info regarding mortality rates, as I did, as I think that kind of information should be left for individuals to seek only if they so wish. As such, I'm going to ask for my last post to be deleted (do I just report it?).

I also think the thread may cause additional pain to those recently making the decision to terminate who come here for support. I do, however, think this is a worthwhile thread, just doesn't seem to fit here IMO.

Finally, I'm glad this thread has helped some understand why some people may make the decisions they do. IMO those who have/would terminate for DS expect everyone to agree with their decision, just for people to refrain from judgement, that's all

Sorry, I'm obviously incapable of being succinct

MyAngelAva, I'm so sorry you have been, understandably, upset by this. This is why I think this is the wrong place for this thread. I'm sure no one would judge you for your decision in the circumstances. It's only those that choose to terminate for DS that seems to be a problem for some. On behalf of those people that have made that decision, thank you for your understanding and support xx

Thank you Mishtabel, I agree that this is entirely the wrong place for this kind of discussion. I read most of these 12 or so pages at silly o'clock and I guess I was just infuriated because I don't think that the question posed and the subsequent messages posted are helpful at a time of great distress for a number of people who rely on this board. I am assuming that Lesanimaux was asking out of some sort or curiosity and is not in a horrible situation with decisions ahead of them and I think it's naive to think some people will not have been severely affected by a lot of these comments during a very difficult time. I know that all judgments seem to be aimed at people with a DS diagnosis and not at fatal conditions but those terminations are no less real and their pain no less than mine I'm sure. I just wanted to make people aware that, having been through the ordeal, it's not as simple as "getting rid of your "imperfect baby" and ttc a better one". A dr doesn't come with a magic wand and everything is ok. Especially the later on you are in a pregnancy. And those people who have not been in the position can never judge, because noone knows exactly what they would do in such a situation because, through experience, I have found that these things change when you discover you are "the one" in however many.

I also don't get why this has been moved to here?

It's a philosophical/ethical question and entirely inappropriate for it to be in this section.

mishtabel I am sorry I dont know what you are referring to. Its a long thread and I am not sure what you mean but I will have a look back when I have a bit more time. (shouldnt be on here really, having a sneaky MN)

I am suprised that you would think I mean 'seriously' as in . In fact I am a bit upset. I dont think I have displayed that sort of behaviour on this or any other thread discussing termination for any reason. BUT if it came across in that way I am very sorry. I would hate to think that I upset you with a badly worded post.

yes, I too wonder why it was moved here. What aterrible decision. People going through these decisions do not need to have this kind of discussion in this area.

As someone who's been very deeply upset by Mumsnet HQ's decision to move this thread here, I wrote and asked why. The response I got was that it was upsetting to other mumsnetters to have it in Chat and "We are all for freedom of speech and we have found that allowing such threads to stand nearly always encourages posters to explain their own very different points of view - and this often has the effect of educating people and making them more empathetic."

I have found this really shocking. I didn't ask for the thread to be deleted, merely to be moved to an area where it would not cause distress to women who have made (or will find themselves facing) decisions about terminations. But it seems that those of us in that position are here just to educate others and we should just suck it up in the interests of freedom of speech. This attitude completely misses the point that there are real people posting here about awful situations they are in, not that this is some debating topic where we can all air our different opinions.

I don't post here as some kind of lesson to others. I post here to connect with others who have been through what I have been through and I feel that Mumsnet HQ has taken that away from me.

Just to add, I hope everyone realised that I actually meant to say "IMO those who have/would terminate for DS don't expect everyone to agree with their decision, just for people to refrain from judgement"

did the OP deliberately NOT post it in this section to start with? I do hope so. What a shame that mumsnet hq thought this a more appropriate place.

I agree this is an inappropriate place for this thread.

Mishtabel, I found your stats useful and I think your post was really helpful to me but I think you might have taken mrsdevere the wrong way. I couldn't see a 'seriously' but was the word you were upset by 'honestly?', i can see where you are coming from but i took it to mean 'do you want to know honestly how I feel?'. There are a lot of emotions tied up in this thread because it talks about times in our lives which were very upsetting - or issues which concern people we love very much. i was in tears through parts of this thread (and it remained with me yesterday evening) so although it is an ethical discussion it is also a very personal one.

I wanted to add that the fact that this thread features in "Discussions of the Day" only adds to my impression that this is seen as some sort of abstract topic we can all have a consequence-free chat about not an intensely personal and distressing experience.

Yes, it was moved by MumsnetHQ after objections were raised (in Sitestuff) to it being in Chat.

I dont think the thread should be here. It is not up to those who have been through this to educate others unless they choose to.
This is not a choices thread or a supportive one. It was intended as a discussion/debate.
As a debate it invites opinions that would be unhelpful and distressing to someone dealing with the issue first hand.

I welcome debate on these issues because I think our society needs a good deal more education regarding disabilities BUT this debate should not be forced upon those who are having to live it rather than theorise about it.

Oh thefirstMrsDeVere, just saw your post - you didn't upset me, honestly. You have been nothing but your usual lovely self here (I lurk a lot). I'm sorry if I made you feel upset. I just wasn't sure of the context of the 'seriously', but I had no problem with your post. Again, sorry for any misunderstanding

Forget it Mishtabel Its fine honestly. I was upset with myself because I thought I had put my foot in it and I shouldnt have projected that on you. I didnt mean to but I came back (again - have loads to do!) because I realised how my post might come across.

How is that for tying ourselves in knots

Oh more from me. Sorry I meant "honestly" (thanks Manitz). And how you said it manitz is how i took it at first, then my defensive little self, thought 'was it?' [moan]. I should get an early night I think. Goodnight ladies :)

Another x-post - I am just too slow to keep up with you ladies. I'm glad that is sorted mrsdevere (in case you happen to pop back) :)

OMG, I had no idea that Mumsnet HQ had actually moved this thread to the Antenatal tests/ choices board.

What an amazing lack of judgment.

I'm sorry, I was reading this thread (when I should have been asleep really) on my iPhone last night and thought that it was LesAnimaux being inappropriate by posting this kind of question on this board.

So ghislaine, let me get this right; this thread was 'too upsetting' for people in a general Chat forum but it was not thought to be 'too upsetting' for people who are actually living the nightmare and consequences of finding out that their baby is not 100% healthy, with whatever diagnosis and decisions that may entail?! For those people who now feel they have to justify their own individual reasons for fear of being chastised?

I am all for free speech, however it has to be appropriate, and Mumsnet surely has a duty of care to protect its users from emotional harm. This is not the place for such an abstract debate. I agree with the others; although I hope that some of the people who have read and posted on this thread have learned something, we are not here to educate others at the expense of our own emotional wellbeing.

Hi all,
I'm really sorry folks have been upset by our decision to move this thread to this topic yesterday. When we set up this topic it was for the precise reason to house this kind of discussion around choices to do with testing in pregnancy. At the time it was felt it would be better to have one place where such discussion could occur, so that those who wanted to, could easily hide the topic.

We do understand that these issues are extremely emotive and potentially upsetting but we do also think that MN ought to be a place where people can discuss difficult subjects. If you disagree or think we should review this please do let us know and we promise to give it some more thought.

We know that there have been some issues around being logged out which means that hidden threads aren't always staying hidden and we looking into that as a matter of urgency.

Best
MNHQ

Yes, MyAngelAva, that is exactly right. I guess it has been made very clear to us that the feelings of women who terminate for abnormalities really don't count.

Justine, are you and others at Mumsnet HQ really not able to see how inappropriate this is? This is not the place for such a "discussion" as you term it. Whatever the original intention of this section it has clearly evolved away from that.

If perhaps I started a thread asking whether you would be able to turn off the life support of a fatally injured loved one, would you move it to Bereavement so that others who had been through that decision could give their opinion and educate others about the experience? It's just a discussion, after all.

@ghislaine

I wanted to add that the fact that this thread features in "Discussions of the Day" only adds to my impression that this is seen as some sort of abstract topic we can all have a consequence-free chat about not an intensely personal and distressing experience.

Hi ghislaine
Thank you for your comments we will take them on board.
We just wanted to clarify that this thread has never been a 'discussion of the day'. We do read your feedback so please do continue to add to this thread.

Best
MNHQ

I personally do not go into general chat as that is not where I feel I would find the support I need. I go into antenatal tests and choices as there are women who have had to experience things I have. I also continue to visit AT/C to offer support to those unfortunate parents who are having to live the nightmare I have lived and continue to live.

Choosing to terminate a much wanted pregnancy for ANY reason, not just for DS is absolute hell. What we have to experience and the journey we begin after the termination is a long and lonely one. Finding the support I have found on mumsnet has helped me along my journey. I actively avoid any chat subjects that will judge me and have the usual 'I would never terminate... and never have' because I CAN NOT COPE with that kind of negative and judgemental attitude.

The fact that MNHQ feels that AT/C is the place for this thread is shocking. AT/C in my opinion is where parents who are scared, worried for their unborn babies, afraid of judgement and who feel they cannot get any support in RL go to find the support they lack elsewhere.

People DO come to AT/C to discuss difficult subjects, and the reason these subjects are difficult is because they are living these subjects, they do not come here to debate ethics. How very unhelpful to have such a damaging discussion - because this is a discussion thread, not a support thread - on an area of MN that is specifically design to provide information and support to those who are going through one of the worst nightmares any expectant parent can go through.

I did not terminate for DS, my daughter had other issues which lead us to our heartbreaking decision, but I fully support all my friends I have made on here for each individual decision to let their babies go To have a thread that is as passionate in each view on the issue of termination is very damaging to already vulnerable MNetters especially those who are very recently experiencing the loss of a much wanted baby, or those who are having to come to a decision.