I find it sooo hard when people talk about nuchals and CVS's and amnios etc

[TeeCee]

I really try not to. I know some people need to know. Blimey with DD2 I found myself having tests, something I had never thought I'd do and found very uncomfortable, but a situation I found myself in all the same. I went through hell with all of that. Cried buckets, felt like shit, felt such a terrible person. It was the hardest thing int he world when I realised DP desperatley had to know.

I just feel really, really uncomforatble when people talk about checking the nuchal fold and booking in for a CVS etc. I'm sure they have thought loads about why they are testing etc and have made an informed decision about why and what they'll do and why they would do whatt hey would do etc, but sometimes the matter of fact way these appointments are discussed, it feels like they are discussing nothing more important than a hairdressing or pedicure appointment.

All these people that have a CVS or an amnio booked, are they all doing it becasue they need to know either way or are they doing because they would all abort if the child had Down's? I know you can't answer that, and it's none of my business anyway etc etc etc, but it's what goes through my head everytime.

How can I be a mother to a child with Down's and not be slightly pained by all the seemingly casual talk of CVS's etc?

Sorry, just needed to offload as feel quite sad about it all. It's the hormones, ignore me if you like, I won't mind!

i dont think we are judging anyone - lots of posts specify that- really just discussing how it feels to us as sn parents

off topic, but at a kids party saturday i was asked if fancied any more kids. those of you who ttr will know that yes, we do plan one more. And my biggest fear was the response

the response?

Are you sure thats a good idea what with your genes and everything?

I KNOW dfor a fact she didnt mean it nastily, and I took time to explain the odds as I see them of having a fourth child who is our third with asd. However, I did feel very that she felt asd kids are worth 'less' than other ones, iyswim.

I see where your coming from TeeCee. In my dd3s case, we had to know, in case she would need scbu at birth, thankfully she didnt but 10m on we still have regular paed appts, eye checks, she wears glasses, has partial cataracts etc, audiology appts etc, probs that may not have been treated so quickly had we decided against extra scans. Believe me i didnt find any of it easy or take any of it lightly, but i didnt want to offload on everyone who asked me how i was.

I understand that BigCar, and if I was going through the same I'd deal with it in the same way too. I'd try and be upbeat about what I was going through, rather than all down about it. I totally appreciate that way of coping with things. But there are still people who seem to get into testing without really thinking it through to the end.

Berolina put it very well when she said : "I think it's part of what I'd call a trend towards 'pregnancy insurance' - the desire to protect oneself from anything perceived as 'risk'." And that risk is always centred around Down?s syndrome and it?s all very negative where in fact this is the least worrying syndrome that can be picked up in the scans available to women.

Unfortunately KatyH on another thread has just very sadly discovered that her child is anencephalic i.e. the brain and skull have not developed, it's a form of neural tube defect. If she decides to continue with this pregnancy her DC will not survive more than a few hours. This is a prime reason why testing is a good thing so Katy and her family can make a decision on what to do for the best and they can prepare themselves for that.

Fio - at first i was annoyed when people asked did we know and would launch into a whole big story now I just say yes and ask why they need to know. Most common group are medical professionals. When pushed I know some of them feel that we had dd1 because we didn't know and had we known we would never have had dd1 - iyswim. So we are to be pitied and seen as martyrs to the cause iyswim. Still saddens me that just prior to leaving the UK we learnt that the year dd1 was born - more children ( from memory it was significantly more) with down syndrome were terminated than were born. Very sad.

I also had a friend who was gobsmacked that we were thinking about other children - never our intention for dd1 to be an only - soon she will be big sister to two siblings. Friend said to me - what if you know... and I pushed her and said what if what happens??? Finally got her to admit - what if we had another child like dd1. I said I would be fine. Although I know there is no other like dd1!!!!

In fact I was terrified about how I was going to cope with an NT babe when all I had known was ng tubes, apnoea monitors, babies born by emergency c-section spending first days of their life in ICU and then first weeks in SCBU, babes at 8 weeks old having two open heart surgeries, specific formula to repair lymph system and so on. I felt more out of control with dd2 than I ever did with dd1!!

TC - counting down - 4 weeks friday and no3 will be here and am sure I will then know I am alive. We are getting a bit of attention seeking behaviour from two little girls who I think are starting to wonder about this baby and what it is going to mean to them.

They love talking about the baby and they want to hold baby's hand/cuddle baby when the baby is born etc. They hug my belly and give baby kisses on my belly etc. Dd2 was playing with dd1 at kindy when I dropped dd1 of the other day. Dd2 tried to offer the baby a play cake - so she lifted my shirt to give baby a cake.

BUT then we get cheeky, behaviour pushing the boundaries!!

Gotta love em.

they think it is another girl but she was not very sure at all so stressed the think part so I am waiting and seeing - was not confident in her thoughts. Another pink one would be fine by me - don't think I would know what to do with a blue one.

started a new thread to end the hijack

I think it';s the "pregnancy insurance" thing that gets to me as well. There's some sort of idea (perpetuated by the leaflets, medical advice etc) that you can just get rid of it and all will be OK. That everyone has the "right" to a NT child. I do understand Davros' decision, but I always knew that I would have been too much of a coward to go through with a termination. I think mentally that would have unhinged me more than giving birth to a disabled child.

I wonder whether with the expectation that a dx of DS will lead to a termination (and I have to say it does seem to be an expectation from having spoken to mums who had DS dxed antenatally), some women end up being railroaded into a termination when really the best decision for them would have been to have the baby. I remember one of the early threads on here in SN was about this- a woman had written about her experience of terminating her baby with DS. It was not -pretty reading (led to a spat on here as well), but I remember being left with the feeling that perhaps she hadn't made the best choice for her.

I can understand wanting to be preapred. i found out the sex of ds3 because I wanted to get my head round him being a boy (autism 4 x more common in boys etc).

I couldn't agree more about some women feeling railroaded JimJams. I think if you are scared and vulnerable and a 'professional' is telling you how hard it's all going to be and reading you a list of health problems youre child could "suffer" () and basically hands you the 'easy' way out and seems to be pushing you in the direction of a termination, I would imagine there are lots of confused, scared parents that take this route. Not saying that all women do this, lots of women spend weeks living with the idea of havingand of not having a child with DS and come to a decision based on a great understanding, but I know thta's not always the case and that makes me really sad.

I personally think the world is a better place for having people like Lottie in it.

mmmm, agre with jimjams- we said no to amnio because (I kmnow Ive posted all this before, maybe newcomers etc) we knew a termination just wouldn't be an option for us. Its just not how we are. We got constant phone calls etc from MW basically railroading us into Amnio. In the end they got me so panicked I backed down and agreed. The amnio nurse counsellor asked us what we would do, we said termination was a no no and she asked why we were there then- we said how we felt and she poped off to get the practioner- she was gone so long, clearly giving us a long time to think (knowing that with ds2 and ds1 rest wold have been an impossibility ofr me post test) that we decided to do a runner from the unit and never regretted it- though my (normally lovely) MW was a bit miffed four weeks later when she phoned to see if we'd heard anything

Tests can be a good thing- scans saved Sam's life and possibly mine by proving he was in a bad way in uetro and losing weight. But they need to be handled with caution and information, by people whose only goal is the family welfare- unfortunately I suspect the NHS can save an awful lot of money by railroading people into tests such as amnio compared to what would be spent if the children with sn were actually born.

FWIW I would not even bother with the blood tests next time, despite being older- it affected nothing in any positive way. That's a learned thing though, much like not giving milk to any future child before 3 because of the ASD.s.

TC, you know my feelings on this and I'm sorry you're feeling down. I gave prenatal testing a great deal of thought (as did you, with dd2 - and no one thinks any less of you for doing so) - it definitely wasn't a casual thing, and I do not get the impression on MN that it is either, with the majority of women.

The "assistance" you talk about on the leaflet for a family with a child with DS could be something as simple as bf counselling, which many women with NT babies have too...pleased don't get so worked up

Ha haaa, you took your time Buundle, wondered where you were!
Oh ok if you say so I won't get worked up, they must have meant bf counselling, or something simple like that, yes any parent to be would think that's what is meant, it doesn't sound heavy or sinister at all, silly me!

don't stress that baby...just have another hunk of chocolate

I don't know if anyone remembers the big story in the news in 2000 re: all this. A big northern teaching hospital got their probabilities wrong with regard to Down syndrome (a millenium bug no less!) and lots of women were recalled. I was one of them. At 20 weeks PG I was told that my risk had increased from 1:300 to 1;90 and offered a fast track amnio with the results later that day! I didn't know that could be done. Anyway, we refused. Part of me wanted to just KNOW one way or another, but as my then DH pointed out, risk of DS was less than risk of miscarriage with a amnio, and we wouldn't terminate anyway. So we didn't have one and DD3 does indeed have DS. But I since heard that some women who went on to have NT babies were suing the hosp for the "stress" of the test pobabilities being wrong! This made me furious - some people have no idea of how lucky they are that their baby has no extra problems. I was also insulted on behalf of DD3 - the thought that they may have a baby like her was so stressful, they needed monetary recompense?? Get a life, realise how fortunate you are, money grabbers.....

I met a mum at a birthday party a couple of years ago who'd just had a little girl who had DS (undiagnosed antenatally, a big shock for the family) and she was getting extra help with feeding/latching, and that was all really.

I got loads of 'support' when Lottie was born and I just used to think 'what are you all doing here, she's a baby, she's just being a baby'. It was bizarre really. She had SALT when she was about 3 months old fgs!!

Fio, I'd not seen this before, its dreadful - termination at 35 weeks!! I thought my case was bad (see earlier post) where it was suggested at 20 weeks. At this stage DD3 was moving, and i'd had a scan which said probably a girl, so I'd named her. But 35 weeks, FFS!

We can't have Jimjams being more unhinged

Oh God Fio, just had a proper read of that article. Left me cold but the last line gave me goose pimples "In the end, the couple decided to act on biased information of their own: love."

hi teecee,

I am probably one of those who has discussed having a nuchal scan in what might seem a pretty cavalier attitude on the sept thread. I'm really sorry if I was being insensitive. My mum has taught special needs children and I have spent a great deal time with some of them and to be honest if it was just up to me then I would probably forego the test but it isn't, my dh is also involved. We had a long discussion about whether to test or not and since he wants to be armed with knowledge before the birth, I have respected his wishes.
I think sometimes we just post and run (well I do) and forget to read what we've written and consider how it might affect others.

35 weeks!!!! That's dreadful. Do these poeple not even consider the emotional impact of having a termination at 35 weeks. Is DS really `that terrible, that it justifies a 35 week termination. Good grief.

You're right Davros. I think I'm quite fruitloop enough as it is at the moment. Thank god I only have guinea pigs to worry about now (one is looking suspiciously fat actually).

Hi Laksa, listen don't apologise, I'm sure that no-one is having tests without really thinking things through to the end and weighing up whether they actually really need to know or not etc. As a mum to a girl who has DS and being hormonal it's just a bit hard to be around seemingly casual conversations about it. I'm sure the actual tests aren't being taken casually it's just the chat that's casual, but is a little tricky for me that's all.