AIBU? These 'wonderful' Nuchal test result threads, do they hurt you a little?

[ThomCat]

I'm probably just being over sensitive but does anyone else feel a little.... uncomfortable with threads were the poster says 'ohhh so releived, had my nuchal results and baby is Ok, so relieved'. Does it feel a little hurtful to you?

I mean of course everyone hopes for a healthy baby, but I just feel that when the thread says 'thank god my nuchal was ok' it's like saying 'thank god my child won't have DS' and therefore I find it so hard not to be a tad defensive over Lottie and feel a bit weird about it.

It's a difficult one for me, is it for you?

Of course they are happy their child is fine and healthy but it's so hard to read 'thank god my child isn't going to be like yours' into these threads.

I know it's unresonable of me really, it's just a bit weird for me. Do you know what I mean?

I don't honestly know whether you're being oversensitive but I must admit to wincing a little when those kinds of threads come up about DS even though I don't have a child with DS myself. I wonder too whether people think 'my nuchal results were fine so now I know my child doesn't have SN' when it's not necessarily the case. I'm rambling now but hopefully ykwim.

Thanks Chugnuts. Yes I know, a clear nuchal only means the child won't have any chromosome abnormalities.

ThomCat, I have a two week old newborn (dc3) who doesn't have DS, but we had a high risk 1:10 blood test result for DS and opted out of having an amnio to find out 'for sure'. I think people just do the tests without thinking of the consequences and when the results come back not as they expected they then, as we did, have to go away and think through their options.

I can imagine (or not actually) how it may feel to you, when people are relieved that their test results are fine, and I will admit that I was relieved when my lo arrived and did not have DS, but I would like to think that thanks to all the wonderful words from people like you and other mums of children with DS (and other SN) who have posted before that it would not have been the end of our world had he been born with DS.

I am sorry that it upsets you, I'm sure people don't mean to be insensitive when they post.

Hi cameroonmama , yes I know people don't mean to be insensitive, of course they are just happy that at this stage of the pregnancy everything appears to be fine. I so see that, of course I do. However, I just can't help but feel a little ... uncomfortable really, with that whole unlying 'thank god my kids not going to be like yours' thing. I know I'm being sensitive and proabbly totally unreasonable but my feelings of slight upset are valid and I can't help them. I just need to not click on them but it's so hard not to! Thanks for you post, xx

ThomCat, I don't think you are being unreasonable at all, I'm sure it is totally natural to feel how you do and I'm sure if I was in the same situation I would feel exactly the same.

An example of being the "wrong audience" I think TC, I tend not to click on them. I find the "now I know my baby's perfect" a little as well.

If you've been supporting someone through their testing don't feel as if you have to "congratulate" them for a negative result if it makes you feel you're being disloyal to Lottie. You've done your bit, you don't need to say anything esle.

oh and TC no-one wants a child like ds1 (lovely though he is- severe autism tends to come on the list of terribly dreadful things for most people) so I know what you mean about the 'I don't want my child to be like yours" thing. TBH if someone ever does make me feel that way I just stop clicking on the thread and walk away- it took me a log time to realise but you don't have to be there for everyone- you only have to do what you feel comfortable with/happy with.

I have a general life rule now- if something is difficult/upsetting/stresses me out I no longer do it unless I have to. I feel that my life is considerably more stressful day in/day out that 90% of the population, so I don't do anything that is going to add to that.

This sort of thing would come on that list iyswim.

Thanks Gess. You're right, as usy=ual! And with regasrd to congratulating soemone on a clear result etc, no I absolutley can't say congratulations, have never been able to. I have to just say 'I'm pleased you got the result you wanted' or words to that effect, or these days I don't say anything at all. I must just learn to walk away a bit more when these threads pop up where I can't help and it's all about getting a clear test.

How are things with you at the moment?

not only does it make me sad that these people dont want a child like my wonderful daughter, but also i want to scream at them that a low risk from a nuchal scan means absolutely nothing whatsoever and that their baby might still have DS or any other chromosonal/genetic/physical condition when born.

I had a very low risk nuchal scan when pg with Tanzie (only had it as it was a routine thing to do, never thought abotu the consequences). my risk was 1 in 3120

so i want to shake them and tell them that a) the risk means nothing and b) life with my daughter is wonderful and i wouldnt change anything about her

Sxx

Someone told me recently how they had given their first 3 children the MMR but that was before they knew my son (severe ASD) and now they were worried as child no 4 is due their jab. This was a close friend but she really didn't get what she was saying.

My childless sister's reaction to my sons dx was to try and support us. She refused to say that she was sorry as she wasn't sorry my son was part of the family and ASD is an integeral part of him.

Totally understand how weird it must feel for you.

Hi
my brilliant GP sent me for lots of testing when I was pregnant as he knows my other kids including severely ASD son. He knew that I just wanted to get any info asap as life is complicated enough without extra surprises LOL.
whilst i truthfully was a little relieved by the results (to perhaps just get a shot of ordinary - oh isn't ordinary nice sometimes!) I wouldn't be without my gorgeous boy and i did feel very odd having to reply to people who gushed... OHHHHH you must be SOOOOOOOO relived !!!!!!
I think people are just terrified of the unknown - probably i would have been too as I am quite a coward really.
The only thing that annoys me a little is when I have heard people say that they would not continue a pregnancy with a child with an abnormality and claim that it is because it would be too hard on their other child/children. I know lots of other sibs and they do have to deal with some of the same stuff as we do but they are often amazing kids with insight and independence and compassion. My eldest has gained more from his relationship with his brother than could ever be eroded by our more 'difficult' times.

Hi tibni
off topic but your post reminds me of a close friend of my hubbys who phoned him at work to explain that near his home there were plans to open a residential half way home for patients with aspergers ( after school hoping to cope independently eventually).
He wondered if , as our son is autistic, we could give him some examples of behaviours to help him object to the home

Actually i should say ex-close friend.....

Nice to get this off my chest and read your supportive posts and see I'm not alone (knew I wouldn't be but nice to read your posts anyway).

i feel uncomfortable with those threads too TC , it's the pursuit of perfection that i struggle with.
funnily enough i avoid the G&T topics too

I feel bad now that I've never thought being relieved at OK nuchal scan results would ever upset anyone else to be honest

I can see why it might be but I suppose I think it is a little unreasonable .. but then I think its unreasonable that other people have normal lives and don't need to worry about their DH's meds and diet and flares and the future

I suppose what ever life you have that is your little cocoon .. and when others say someting that reaches inside your cocoon and tells you its not the same kind of life you feel angry / upset / annoyed and a little like its bloody unfair and that's natural

But then you can look over to the next coccoon and think thank god that's not me

I suppose its just life and human nature and we have to develop thicker skins or pretend it doesn't get to us

TC I feel this way too. My dd2 is completely, utterly perfect. (as are my other 2 I hasten to add)
Also get upset by people saying that by terminating they will ensure their child doesn't have to face struggles or whatever..
yeah, let's all jump off a cliff tomorrow and do away with all those struggles we face.
I like gess's stress reduction approach.

The terminating one is so hard, too hard.
I've gone to bed in tears over it before now. The 'I couldn't cope' line always gets me. Course you can cope, it's your child, they will just have an extra chromosome that means they won't be exactly the same as everyone else but people with DS are still valid, worthwhile, 'normal' people. Lottie is a wonderful and important part of the human race., she deserves to be here, she should be here. I say it all the time but the world, or our corner of it, is so much better off with her in it.

Twiggs - say it was your DS that was on the meds etc, not your DH and this was something that could be detected in the womb and people were terminating children due to this and being so relieved they didn't have to have a baby like that etc etc. It may be totally resoanble for them to feel that way, but at the same time it's not unresonable for you to feel sad about it all. It's a natural reaction to be protective and defensive over your child. I'm not being that in an aggressive way you understand.

Anyway, you get what I mean I'm sure.

Just nice to get these things off one's chest now and then.

TC, whenever I see those thread I think of you and others and wonder if it hurts you and thought yes, you could be upset as they are saying they are relieved they are not having a child like yours

was just thinking it a couple of days ago!!

I would find it very hurtful also and don't think you are being over sensitive at all

. I don?t think you?re being unreasonable. But I do think that people who have never been there don?t think about it in the same way as peple who have. If you?ve never had any personal dealings with disability, then you have no idea what it?s like, and generally people don?t want to contemplate having to do things differently, hence their apparent inability to cope.

And I don?t think the relief is necessarily because people don?t want a child with x condition, but because they wouldn?t want their child to have x condition, I think that the two are different. E.g., there was a 50% chance that my ds would inherit my dh? eye condition. He wouldn?t have been blind, but he would have had some sight impairment, and would have had to go through surgery to rectify this condition, and although his life wouldn?t have been that different really, it would have meant trips to hospital/potential referrals to eye consultants/potential discrimination by those with less understanding. It didn?t bother me that I might have a visually impaired child, but I was glad that my child isn?t visually impaired. That?s not the same as saying I don?t want a visually impaired child, iyswim?

And sadly I think that there are those that couldn?t cope, and that feel the need to terminate pregnancies because of it. My mother terminated an unplanned pregnancy when I was 7 because she didn?t want another disabled child. To me those people are different to the ones that simply want to know or would love a child regardless, and it?s hard not to judge those.

TC .. no I completely understand, its just it hadn't registered before .. but it makes sense .. of course

Well I think I am being a tad unresonable in a way, but glad of all your supportive posts.

pagwatch I've just shriekd at your post!!!! Ex friend indeed.