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!

Hi
I had an amnio at 18 weeks. This decision was not an easy one to make. At a nuchal scan at 13 weeks, which I had partly due to DH and partly due to the ability to see my babes an extra time (it was just a formality as far as I was concerned, I also wanted extra reassurance in order to be able to push for a homebirth) it was discovered one of my twins had an exomphalos. This gave us a 1/3 chance of a chromosome abnormality (Downs, Edwards or Pataus, with the latter 2 more linked to exomphalos). When this was explained to us we would have gladly chosen a baby with DS as the other alternatives were just too distressing.
We had an amnio in order to try to get our heads round what we should do in terms of care for both our babies. It was suggested it may be optimal for twin 2 (if twin 1 had something disastrous) to maintain the multiple pregnancy until week 32 and then selectively terminate twin 1 so if I went into spontaneous labour twin 2 would have a fighting chance by this stage, it was also discussed that it might also be better to terminate twin 1 earlier as this may enable him/her to go to term and be a healthier baby as a result. Both of these options just seemed abhorrent to us. We decided to have the amnio so we would be prepared and could prepare DD1 and also it was just the right thing for us to do. We hadn't even definitely decided to go ahead with the amnio until the day of the appointment when we sat and discussed it at the hospital. It was more so that we would know if we were more or less likely to have two babies, one baby or no baby and enable us to be in the right place to deliver with the right team of people around us to give both of our babies as good a chance as possible.

We are now having weekly scans in order to monitor both babies and help to determine the best method of delivery. We have been referred to foetal heart specialists and paediatric surgeons who have advised us on loads of issues. Yes they have offered termination as one option but they have also offered lots of support on how we can carry these babies for as long as possible to give them a fighting chance and referred us to a hospital which will be better equipped to deliver what is likely to be a poorly baby when it arrives.

I agree some people do seem to make decisions lightly but not all of us. Often what we post is also more easily misconstrued than the spoken word when you can hear our tone of voice or see that we are actually sobbing whilst we discuss something so potentially traumatic. Things are not always black and white; there is a heck of a lot of grey in this world. For many people it is fear of the unknown that pushes them towards testing. Not everyone who has an amnio/CVS is saying a baby with DS is worthless or should not be kept. I think it is quite naive of you to think that only DS is tested for when there are actually lots of things that get looked at. I don't think you are being too sensitive as it can be upsetting, especially when a topic is so close to your heart but we all have to make our decisions based on the information we have available to us a the time. I hate to think I would be judged as a bad person for choosing to have an amnio when it was a carefully considered decision at the time with the info I had. Part of me now regrets having the test as I could have jeopardised this whole pregnancy but that is easier to say now I have had the all clear on the chromosome front. Part of me is relieved I had it as there are so many other things to worry about in this pregnancy that I can at least focus on them.

Sorry to pop into the SN threads - but I just wanted to give my personal perspective.
When I was pregnant with dd, it didn't occur to me for a moment to not have a nuchal scan. For me the scan more than aything though was an opportunity to see the baby in me, make sure that it had a heartbeat, and was growing well. To be honest, I hadn't even really thought about what the scan was for - in terms of providing possible info about genetic conditions.

With ds, I was much more aware of the issues, and so went into the scan with greater trepidation. And part of that trepidation (sorry TC) came from the wider knowledge I had through mumsnet (and posters like you TC and also Eidsvold) of parents with children with down's syndrome. I knew more about the syndrome, had seen photos of children with down's syndrome, had read about their progress, their lives. And so I was much less certain of what I would do if there was a marker on the nuchal test. In fact, had discussion with dh and said I really wasn't sure whether I could abort if the baby did have down's. Whereas probably would have had before having dd and before mumsnet.

In the end, nuchal came up 1:1800 again, and so didn't have amnio and ds NT.

But would have wanted to know beforehand so I could have prepared myself for what was to come.

Got a question. Friend of mine is preg with number 3. She's over 40 and her 2nd child has severe special needs.
Naturally she wants a CVS or an amnio. But she's been told she can't have either test until she has a nuchal scan and that she must pay for the nuchal! 200 quid.
Doesnt sound right to me. Any thoughts?

Charleymouse - wishing you all the best for the remainder of yr pregnancy, birth and beyond. You sound like you have had a very tough time and you're preparing yourself for even more emotional uncertainty. Your babies will at least have the best possible care in place for them when they arrive. Lots of love and kindness to you. I agree with the jist of what you're saying - posted along those lines myself points down

Bobalinga - that sounds ridiculous. Its not as if nuchals can pick up even all chromosome abnormalities. I know of at least 3 people who have had them, results fine but babies have had chromosome abnormalities - trisomy 9 and deletion on 16 - in 2 of the cases. Its just another screening test at the end of the day. If yr friend wants to have cvs / amnio she should be able to. Does she recieve any support from a Genetics Counsellor?

bobalinga, I had DD when I was 43, DS has severe autism and he was nearly 8 at the time. I didn't have nuchal as I saw no point as I wanted something with more certainty (yes, I know its not by any means total). There was no problem with this and I had an Amnio, no issues, no payment or anything. Sounds like stupid rules gone mad to me, don't they realise how emotional this whole thing is and then to make someone jump through hoops is just ridiculous.

charley mouse - I don't think I am being niave in thinking that ds is the only thing being tested for however in my experience the emphasis is on down syndrome when in fact a number of conditions can be indicated by a high nuchal result and via amnio.

As a mum to a dd who has down syndrome - I sat in a genetic counsellor's office - about 24 weeks ago and had her try and tell me what it was like to live with down syndrome and make all sorts of assumptions about why dh and I had chosen to have a nuchal translucency screen. I also had her tell me I was wrong when I suggested that a number of conditions are indicated by a 'large' nuchal fold.

So no I am not naive enough to think that ds is the only thing being tested or learnt from nuchal, cvs or amnio testing. However in my experience it is the one thing that people seem to be most afraid of and that various medical professionals focus on.

I know a little of what you are going through charley mouse - my dd1 was born by c-section and rushed straight to ICU. I got to see her on the way past, dh had a quick cuddle. We then had three weeks of ICU/SCBU and then home for a few weeks and then off for two open heart surgeries in three days and then three very tumultous weeks of recovery. Thankfully dd1's heart is like a 'new' one now.

Wishing you the best for the rest of your pregnancy.

weird eidsvold. Turner's syndrome for example is associated a much wider nuchal fold that DS (according to the person doing ds2's nuchal at Kings). Misinformation is not good.

Bobalinga that sounds ridiculous. I know NHS trusts are cost cutting, but that's ridiculous. Defintely needs to be queried.

I'll get her to check. In most places you can have amnio/CVS without paying or a nuchal test too.
Britsol has crappy special needs services too.