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've read but the OP but skimmed most of the rest. When I was pg with dd4 we initially refused the Nuchal scan but when it came to it the sonographer was quite pushy and we thought what the hell. Result came out at 1:14. No way were we ever going to have an amnio etc and I am grateful for the advice I received from TC and others at the time.(More to prepare ourselves). Other scans came back fine,dd4 born at home,12 days later diagnosed with a serious heart condition. As part of the diagnosis bloods were sent for genetic testing (sometimes her condition is linked with a chromosone deletion).All came back clear.I have since asked and an amnio wouldn't have shown anything.
Sorry for rambling,but I think what I'm trying to say is I want to go on some of those threads and tell them my experience and point out just because their amnio may come back "clear" it doesn't guarantee anything.

(PS I hope I haven't upset anyone but I've been wanting to get that off my chest for a while )

Teecee I can understand why you are sensitive to these issues & I must confess during my 1st pg after years of trying I was one of those expectant mums who just blindly followed the MW advice & had the blood screening done.
This caused arguments between DH & I, he wanted to go on to further tests & I said I wouldn't want to & would continue with the pg, the bloods came back low risk so it was a pointless few weeks of arguing.
I discovered my 2nd pg too late for any tests, so dh & I didn't have anything to argue about & our ds2 was born at 28 weeks & has CP & other sn's.
I do however believe in personal choice & there are sometimes some very personal & sadly heartbreaking reasons why parents feel the need to test.
I hope this hasn't offended anyone, just sharing my opinion.

how is your LO doing slow N?

I know what you mean, although I have to admit I had the damn tests with each pg, even though with DS2 it was a nightmare and I vowed I wouldn't do it again .

Thank God there's no test for ASD.

Amazingly well . She's such a superstar! Considering how much time she spent in hospital she's catching up well and you wouldn't know to look at her how ill she's been.

Thanks Davros Yes watch out for Fio, she's catching!

VVQ - would love that, you're on - it's a date!

You know the guy who invented the amno also impregnated a load of women who were having trouble conceiving with his own semen without telling them. Not telling you that for a reson, just remebered this fact and thought I'd share.

Ummmm, actually, do I have that fact right? I'm so crap, I'm doubting myself now. Will try and find out what I'm talking about!

Yay!!!

Just need to tell Hunker now......

I don't think I know what I'm talking about with regard to the my last 'fact'

Yeah but in the nicest possible sense Fio You're some catch

Can you spread it to me please?

Hello, TC, yes, you and VVV are very welcome to come over when we move Her shit-eating son is lovely, honest!

As far as tests go, I had the triple test when pg with DS1, it came back as a weeny 1 in a thousand and something. But with DS2, I didn't have it, because between having DS1 and getting pg again, I realised that there was not a chance I'd have had further tests or terminated. I totally understand why you had tests when pg with DD2 though - it's one of those "situation dictates" things, I think. There's no one-size-fits-all answer, like most things parenting.

However, I do think that the information women get when they're pg is lamentable, and the wording of the leaflets is shockingly poor. If you need anyone else to write to anyone to talk about this, let me know, TC - am happy to.

yay!

TC - a friend of mine is doing her doctorate on prenantal testing and how 'truly' informed women are with regards to pre natal testing and whether or not we give true 'informed consent' It has been interesting sharing her studies with her and hearing other women's stories.

I know where you are at and I can say I know exactly how you feel.

One of the things that enrages me when dealing with medical professionals is the Q - did you know before she was born?? like that makes a difference to their care of her.

As you know I had a nuchal fold test this time - was the worst thing I had to go through as the genetic 'counsellor' ( and I use that term loosely) sat there and tried to explain to me how my life with a child with down syndrome would be - now okay if I was by myself and she had not read my notes fair enough BUT fgs dd1 was in the bloody room with me. She then went on to stress how the nts deals with just DS - and despite me telling her a number of times that nuchal translucency screening can also detect an increased risk of a number of conditions - she just kept banging on about DS. Thank goodness dh turned up at that time and I could say - oh look - here is my dh - and the sonographer is waiting for me. I finished off by asking her what she possibly could tell me about something that I have lived with everyday for the past 4 years and will live with for many more. She was talking about my reality. I guess I got bolshy and cranky BUT bloody hell.....

Something that I have learnt anecdotally as well is that - a low chance nts result does not mean no chance. In fact I have met a few mothers of gorgeous kids with down syndrome who were given results like 1 in 1500 and 1 in 980 - who had a child with down syndrome. The difference between them and my dd1 - they did not have cardiac conditions. So in chatting with other mums of children with ds - it seems that the high chance results are often children with cardiac conditions to anecdotally it would seem the cardiac condition affects the nts result more than the ds. But as I did not have a nts with dd1 I can't comment.

I do get so angry that the focus is on ds when there are so many other conditions that have a much more serious prognosis and outcome than ds and yet they are not even mentioned. It is only through my own reading and research that I learnt about the other conditions that are flagged by a high nuchal result.

However - each to their own and I know my path is not the path of others. Just saddens me when people feel speechless when told that I knew dd1 would have ds and her cardiac defect prior to birth and yet I went on to have her - poor martyr/religious nutter me.

FWIW - eugenics started in the US - a prime mover in the early days disowned her son for marrying a woman who needed to wear glasses!!!!!!

sorry for the long message - a pet subject of mine perhaps

Hi Edisvold, how yoy doing?

I often get asked 'did you know' with regard to whether I had had tests and discovered I was having a child with DS. It annoys me a little too. Are they thinking I can't possibly have known or she wouldn't be here now????

I was with my little group of parents whose children all have Down's syndrome on Saturday, it's a little club we've formed where the kids all trear around and dress up etc and we all sit and talk about how great they all are and how well they are doing basically!!!

Anyway one of the dads was saying that he has a DD with Down's syndrome, a boy and a girl without Down's syndrome and what he'd really like now is to have a boy with Down's syndrome. I thought that was lovely and why wouldn't he want that? But going by people's reactions to - shock horror - having a child with Down's syndrome - they'd think he was mad.

With regard to the wording on the leaflet I received I think I might get in touch with the DSA and see what they think and whether they are prepared to do anything about getting it changed.

EV, good posting. I find all this talk about testing and eugenics very scary and try to ignore it as much as possible. People want life to be absolutely perfect in every respect but things are not like that.

Also some people who don't have any dealings with SN kids can tend to think that parents see them as a nuisance and wish they had never been born. I often see this when there is reporting about premature babies who are going to be a "drain on resources". I don't know if you saw Helen's (?) House last night? There was a boy on there who died of a brain tumour at 21, he had had radiotherapy treatment as a baby which left him brain damaged. However the family videos and the mother and sister showed just how much he had been loved and all that he had given to his family in spite of him being a "drain on resources". It made me cry in a sort of sad/happy way IYKWIM!

Morning Fio. Oh I agree completley I don't think that 'did you know' thing is in any way limited to DS. It is odd though. It would never occour to me to ask anyone that question. It's like they are saying 'would it have made a difference' isn't it. and I can't see how they can think that or ask the question when your child is here with you and very much loved etc.

Im sorry to say when i had dd3 lasy year, i had to have lots of extra scans, she had too much fluid on various parts of her body, and i was one of those women who spoke about it very matter of factly. If i hadnt, i would have been the snivelling, soaked in tears mess that i was at home, not a good look in the playground. Please dont judge us as if we dont care, maybe deep down were just not coping.

I don't judge anyone bigcar, but I do find it hard when people casually chat about testing sometimes, how could I not?