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.

[kittyandthefontanelles]

FanjOeu, you shouldn't ever be made to feel that your beautiful daughter is inferior and anyone who makes you feel like that is in my opinion wholly ignorant and needs some serious education. God forbid your daughter might experience such attitudes, I hope she never does. I was 37 when I had my amazing daughter and when we told the midwife that we didn't want any prenatal testing she couldn't believe that we had thought it through properly. She wrote 'undecided' on our notes even through our protestations that we were very much decided. I found this attitude very offensive. She wouldn't accept our decision to not have any testing-it would have made no difference to us and we both knew very well what range of experience we would possibly have ahead of us. It seemed ours wasn't a valid point of view and was openly discounted. Each step of the way, until it was 'too late', health professionals tried to get me to agree to the testings. I too despise the 'normal' and 'healthy' type of language. Happy Easter to you and your family

[DizzeeRascal]

I thought exactly the same. I've just joined and am still digesting abbreviations such as 'DS'. Sorry, but was confused for a sec.

[GeraldineMumsnet]

Hello, just flagging that we're moving this thread to new Talk topic, Ethical dilemmas in Other subjects. Justine has posted about it here.

[NatzCNL]

ErinH, I agree totally with the point you have made.

May I ask for nobody else to comment on this thread - I am going to be bumping it away from view and I honestly dont care who thinks I am wrong for doing this!

AT/C is NOT the place for this thread and it continues to cause daily upset to those who stumble across it.

MNHQ you should be ashamed in your choice of placing it here.

[ErinH]

I think that a question based on a hypothetical situation asked out of ignorance and (sick) curiosity has no place in the very real antenatal tests/choices thread. This area is for people who are sadly faced with real-life choices. We don't judge. We support each other. Les Animaux, please just accept that no one takes these decisions lightly, every situation is different, and the complexities of chromosomal abnormalities are vast. Having originally posted your question in the chat area is slightly less offensive. But you have drawn the vultures into our place of solace. You have no idea how much heartbreak and crying goes on here. What I wish for you is that you remain ignorant (because I wouldn't wish the alternative on anyone). Why can't you be happy that you've never had a earth-shattering diagnosis and remain blissfully ignorant? However, if (God forbid) you ever find yourself faced with the reality of having to terminate or given the choice to, then please post a valid question and you will find all the support and love you need right here.

[SanctiMoanyArse]

Where should the thread be? I know someone who was hurt because her child was recently dx'd with something like ds and she happewned upon it in chat

Here it has potential also for sure.

Surely then that means there is somewhere lacking in MN for sensitive threads to be moved to?

I know how hard it is to have the tests becuase I have been there; I know how hard a dx is (got 2 ASD, facing a potential 3rd), even if ours were long after the birth. I don't know how hard it is to be faced with a termination thank God (my Mum did so know how she felt but am so glad no personal experience).

Chat wasn't the place, perhaps here is not, so where? MN has always had a huge Sn membership and many of those mums will be just as vulnerable as anyone here- and I can tell you for sure that when you have a recent dx these threads are like an itch to scratch, a sort of virtual self harm, yet hiding chat seems rather random- half the purpose of AN Testing is you can hide it no? Like the vaccinations section: in many ways that is as useful when faced with trauma as it's protected status, given how people face these issues differently.

Yet such topics need to be debated; it is crucial. This thread given the title could as easily have manded in the SN topic and would have been as bad as landing in here or chat. I'd shout loudly for a sensitive subjects topic only I suspect some halfwits woudl use it as aan excuse to spout hate and say 'well it's this area, hard luck'.

I've long wanted an area where there is a protected status much like SN- the opposite of AIBU. not unchallengeable area, but where you know if someone is unsupportive their post can be removed. maybe there should be a difficult subjects area within that? Exvept we 're not moderated so.....

Well yes.

Except again that otherwise what we are facing the choice of whether it's better to ask those facing sometimes potentially terminal DX's for Sn to have to self moderate and be picky about where they post (after all in many ways with my family's ASD dx's we are lucky, far better outlook that than Rett's for example, or Duchenne's). Or do we ask the same difficult task of those stuck in the whole antenatal testing / result nigtmare? can we in fairness ask it of either? I don't think so. there's no hierarchy of vulnerability and no group deserving of more support: both groups need that cushioning, and both groups are likely to be drawn to MN by it's very nature.


Ultimately that's up to MN although I would happily beg them to spend real time considering how something better might function. Uncharacteristically I am going to use my so-called MN Royalty Status (aka had nothing better to do for years now...) and gently remind everyone posting here that all sides of this debate are somewhere they'd never have chosen and equally deserving of support and consideration. Every side of this debate has a fair amount of shite ahnded to it, and the mental wellbeing (and it really is that) of both sides deserves protection.

[Mishtabel]

Wasn't going to post here again, as didn't want to bump it, though hopefully it will be moved soon, so [big breath] here goes...

Fannylogan excellent point. Can I expand on that scenario and say perhaps that conversation had taken place in a shopping centre, within ear shot of many passer-by's. Someone goes to centre management and says "There are people discussing such and such down there. It is upsetting for some to hear, can you tell them to move on?" Management agrees and does so (fair enough), taking the people who were discussing the issue to the place you were talking about, where the are people supporting each other during a horrible time in their lives (not fair enough). "Here you go, discuss it here, you may upset people here too, but don't worry they are the minority, and besides they've terminated their own babies, they'll cope" Ok, so maybe that's not actual how it is, but that is how it feels.

Dueling I was thinking the same regarding 'Would this thread be put in the SN board?' And of course the answer would be no, would be incredibly insensitive to do so. As it is here. But it seems, to some, sensitivity on this board isn't a priority.

Expat would people on the SN board really not be offended though if the thread was on their board containing post after post saying having a baby with DS is wrong? They would, of course, have every right to be. People on the SN boards are living it ('it' as in issues referred to in this thread) every day, and people on the AT/C board are living it in the now too, so of course, threads of this kind don't belong in either board (I know you didn't move it)

Livefortoday I didn't read all of your post as too long but get the gist. That may mean I missed out on pertinent information, but WTH, I'll respond anyway. No actually, on second thoughts, to respond to your post without reading it in it's entirety, given the sensitivity of the subject would be wrong. I, for one, do not for one moment think all people with DS are the same. I'll admit, there was a time in my life when I may have thought this - a time before I was faced with the knowledge that the baby I was carrying did have DS. That is when I did my research into the facts regarding the, potential I'll admit, problems relating to DS. I based my decision on that actually, not preconceived ideas of them all being the same (which, for me, only extended to the stereotype: they're all so happy and loving, and who wouldn't want that?) I'm sorry if I sound harsh, it's just that this oversimplified view of why people might terminate for DS really bugs me. It's like the extent of our thinking is "Ooo, a baby with DS? Dont want one of those " Just not true.

To the people who don't want this thread moved from here, I just don't see how it is beneficial to anyone where it is. No one is asking for it to be deleted, just moved. 
For a start, I think AT/C is mainly frequented by people facing tests/choices, not people  debating the ethical issues involved. For those that have been diagnosed with a DS pregnancy, a thread like this isn't helpful in coming to an informed decision, being full of speculation and personal opinions from both sides of the 'debate'. 
There's also the issue of hurting those that have recently gone through/are going through this, though it's evident this isn't important to a few. The comments are water off a ducks back to me, as I have moved on with my life (interpret that however you wish), though I feel very protective of those who are going through/have recently gone through this and whose emotions are still very raw.
Those with differing viewpoints who do consider the feelings of others, may be reluctant to post their true feelings here for the very reason of not upsetting someone, so you don't get an honest and open discussion anyway.
Finally, people that have terminated come here for support and to support others going through tests etc, whatever choice they come to in the end. They are not interested in influencing another's choice either way, that is why you will rarely see reasons given why people went on to terminate (besides medical diagnosis and perhaps personal situations). So a thread inviting people to speculate about/give reasons for terminating should not be here IMO

[sleepysox]

I don't judge people who do or don't terminate for various conditions. It's a matter of personal choice and personal circumstances.

I was told when I was 35 weeks pg that my son's condition was incompatible with life and was offered to go to the panel for a termination.

We chose not to. When DS was delivered I couldn't stop crying and was shaking uncontrollably and was like this for a few days after the birth. I knew that DH's life would go back to some sort of normality and it was mine that would change the most. I was devastated as I thought I'd never be able to work again and I love my job.

As it turns out, DS has made dramatic leaps forward and is no way near as bad as the docs said. His condition isn't incompatible with life and he's doing brilliantly. I have gone back to work part time and my employer is understanding. BUt I do feel trapped and worried about the future. I know some kids with his condition are unable to live independently and I'm already worried about that. I compare DS to what his peers can do and find it hard when people ask why he isn;t walking/ talking yet.

I guess what I'm saying is that no one should judge people's decisions, because there's no right or wrong answer and we need to support people with whatever they decide.

[NatzCNL]

CoteDAzur, it's not that easy, we wish it was. When you are going through the whole testing process there is a compulsion to know everything, and to hurt yourself with the facts. Having a thread that debated the ethics behind terminating a DS pregnancy is harmful to the mothers who are trying to make that decission. Mainly because she is in a very 'self-hating' place as it is, and to have people voice their opinions (which they have every right to voice in the correct forum) in a place this mother has gone to seek support and refuge will not offer the support she needs. It was very short sighted of MNHQ to think that placing it here was a good idea.

I obviously mis-read your message as I am feeling extremely protective at the moment. Emotions run high in the AT/C forum as I am sure you have figured out, which is why this thread should be moved.

[manitz]

sorry cote, I wasn't meaning to have a go but was taking issue with your point that 'such people are less likely to frequent Antenatal Testing threads than Chat threads, and in that case, MNHQ might be right in thinking that this thread would cause more hurt if left in Chat.' When i was 'hurt, vulnerable and grieving my loss' this was exactly where I came, sorry if I wasn't clear.

[CoteDAzur]

I didn't move it here and don't object thread to be moved wherever, so not sure why you all are having a go at me. All I said was this may be why MNHQ moved it here.

What I said was re people implying that one side of the debate is offensive/hurtful. My point was that if one is so fragile on the topic of DS, possibly because they have a child with DS, they should refrain from threads on DS rather than demand that others don't talk.

[NatzCNL]

I know you didn't expat, what I was getting at is that the parents in AT/C are usually in a very vulnerable state of mind and are of course going to get upset and hurt by comments made on something that them themselves have had to go through.

[manitz]

cotedazur. after my nuchal scan showed that my baby had a large nuchal fold and hydrops i did not want to chat. I came here and talked to people about that result and then googled hydrops as I did not know what it was. I really didn't want frivolous conversations at all when the baby was found via cvs to have downs syndrome people commented on the thread I had started and thoughtfully shared stories of their children and the experience they had had as well as directing me to useful websites. I chose to terminate my pregnancy and this is the only place where I know anybody who has made the choice to terminate a wanted pregnancy. I don't know anyone in rl who has also done so. It took a reasonable length of time before I felt like visiting the rest of mn.

I'm guessing you've not really looked at the section much.

[NatzCNL]

CoteDAzur am I right in assuming you do not frequent the AT/C? Because I am sure that if you did you would see a lot of support groups on there for women who are going through the screening and diagnostic stages of their pregnancy, as well as many support groups for those whose pregnancies have come to an end. There is nowhere else for these mothers (and some father) who are grieving to go. Something, which thanks to this whole event with this unwanted thread, we are hoping MNHQ will change

[flower11]

cote antenatal choices is currently where there are support threads for those who have terminated for abnormalities, people seek support and guidance through the whole process, teats options and their outcomes.

[expatinscotland]

'Expat, it is good to know that the parents in the SN forum would be able to discuss that topic without getting upset. But the parents that are using this forum are in a very emotional and vulnerable state when they come to seek support and advice.'

I didn't move it.

[BlueCat83]

I think they visit the "and choices part"

[flower11]

I agree with Natz and Manitz speaking as somone who uses antenatal choices for advice and support, it is not the right place for this thread, the Op was thoughtful and sensitive and did not post in here, just wish mnet HQ could show the same thoughtfulness.

[CoteDAzur]

Manitz - I thought that "those grieving a recent loss" would indeed be unlikely to visit Antenatal Testing topic as they are no longer pregnant. However, Chat is visited by everybody. I might be wrong.

[NatzCNL]

I second that request Manitz

[manitz]

cotedazur are you saying that people who are hurt vulnerable and grieving because they've recently had an unexpected result from a test or have just had a termination or are coming to terms with a pregnancy that is not quite what they expected are more likely to be popping into chat rather than into AT&C?

This isn't a people who have had a termination against those who have children with downs situation. As I understand it all those who have had a pregnancy which could have resulted in a child with downs (whether they continued the pregnancy or not) are not particularly happy about the presence of this thread. AT&C is not just for those who have a termination but it is a place where people are considering their choices following antenatal tests. It is not appropriate to have this thread here because reading about people who have never been in either situation theorising about what they may do and making judgements is not really that helpful nor is it supportive.

MN could we have a new section called debate and discussion? debates are often lively and then people would understand that all points of view would be represented and judgements may be made. it could then be avoided if wished.

[NatzCNL]

We have all been asking LesAnimaux, they haven't listened to us so I dont hold out much hope for your request. But thanks for trying!

[BlueCat83]

CoteDAzur When I had a high NT I googled it and ended up on Mumsnet, I hadn't posted on any forums before and hadn't even heard of mumsnet! Antenatal results and choices is where I ended up and stayed.

The ladies on their are lovely kind people and certainly not terminating out of some desire for a "perfect" baby.

[LesAnimaux]

I have asked MNHQ to move this thread to "other subjects".

[MyangelAva]

northernlurker there have been a number of posts that have passed judgment and refer to babies with disabilities, those that are not perfect and so on.