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 think i know what you mean TeeCee, i didn't have any of the tests for my three.
i have a lady i know who had IVF and she had tests for everything going, she did tell me that as the baby had cost her so much she needed to make sure it was perfect her child was DX with autism at 3.you see you can't test for everything, thank goodness.

TeeCee.

You are more sensitive to these issues than 'most', tis true. But rightly so. Because you live the life that these people are trying to predict whether or not they will have.

It is difficult to understand just what it is like to have a child with DS or any other type of SN. You dont know till you live it. So, they may well be being insensitive, but, I guess it just doesnt hit home until it hits home. Nothing can prepare you for the arrival of a newborn. The same very much applies to the arrival of a newborn with DS.

First time mothers sit there, and happily fill out their birth plans, what music they will have playing in the background, what colour knickers they will take in to hospital (coz they'll have their bag packed and ready 4 months in advance - you know - in the days BC when you could plan in advance of an event) etc. They wont know what it is like to have a baby, until it is there. Only then will they realise just what was swinging in the balance when they were talking of CVS' and nuchal scans etc.

It will probably (hopefully) change their perspective totally, in the way that having a child does to us all.

Chin up lady.
x

we were booked for amnio (but ran away LOL) because we needed to know, termination never an option for us (was in response to high bloods), however my sister paid for an early nuchal and she wouldn't have proceeded with the pg had it been a positive, which I find really sad. partly it felt like she was dissing us for Sam's SN, but also- I worry- what if the baby had had ASD? or something else? As it was my nephew was prem and ahs a few delays, and tbh she never bonded with him- works 12 hour days by choice.

I know other people have different lives and values, but to me any baby is rpecious and sn is part of who they are. I understand if say Edwards is suspected but totherwise.....

i'm not keen on the termination age (bar medical) being w weeks or more after the baby could potentially survive now either

Teecee, people are insensitive, but I don't feel as mothers of LO with Downs that we need sit on the fence at all. Many people do have tests without thinking of the consequences - I was one of them in my first 2 pregnancies. There are also those who have their testing done, knowing that if it shows a child with Downs they will then terminate. I completely defend their right to do this. However, I also have the right to say that I think they are WRONG to terminate for Downs. I don't have a problem with people terminating cos they don't want a child. I do have a problem with people terminating cos they don't want "that" child. I also feel that those who would terminate for Downs, would, if they met a child like my daughter after the event, feel great regret. Sorry if this offends people, it makes me feel very emotional - and I'm not even pregnant!

agreed peachyclair, the photos of that little baby today were amazing, weren't they?

TeeCee i don't tend to look at the pregnancy boards but i can imagine what they must be like when tests are being done. to a much lesser degree i always feel odd when people tell me about an early pregnancy, because my own experiences have taught me that there's many a slip.

so i'm really, really sad for you that you feel awkward about it and i completely see why. i've also seen you talk about Lottie to pregnant women whose tests have come back positive for Downs, though, and i know that your story and the abundant love in your family has helped them to see that what might casually and thoughtlessly be expressed as the 'nightmare scenario' need not be any such thing. kindest regards.

by 'awkward' i don't mean that you should feel awkward... just a discomfort or unease. i'm not sure awkward was the right word in retrospect.

Aitch - learn when to stop talking

I refused the tests that were available here(? only amnio at the time) as although IU was 30mumble at the time, the risk of miscarriage was greater than of anything else. And of course, as a paed physio Ive come across hundreds of children with conditions that couldnt be predicted by antenatal testing. So for me there ws no point - I couldnt have aborted a child unless I knew it had a truly life threatening condition.

Not that I have ever condemned people I know who have terminated - that ws their choice, mine was based on how I felt at the time.

Righto, QueenDave.

Oh my God, i just typed such a long reponse to you all and my whole house fused and I lost everything. How irritating, I can never repeat that all it was just long ramblings.

The jist of it was that I understand why people want to test and want to prepare themselves. I am also pro choice and respect peoples decision to terminate. I may find some of those decisions hard to swallow on a personal lever but i still respect peoples free choice. In the case of someone like Davros I compleltey understand.

I have blessed to have Charlotte in my life and I truly mean that. Sge brings me the most amazing amount of joy and I'm so proud of her and so proud to be her mum. She's special alright and I wouldn't change her for the world. However, I'm also terribly glad that Eve doesn't have Down's syndrome and I pray that DC3 doesn't have any special needs too. So.............

It's just this whole testing thing, I do feel that some people get into it without really knowing why. It's great to read that isn't the case with any of you guys and your posts have all been very encouraging to a sensitive hormaonal mum like me! But I still believe that there are some parents who do step onto a conveyor belt and testing conversations fly around like people booking in to have a leg wax! I don't mean anyone in particular at all btw.

And it all seems so negative with regard to Down's syndrome. Take this wording on the leaflet I have here: "Most women with a higher risk result will have a perfectly healthy normal baby". Sorry but that offends me. My DD is perfectly healthy and what the fuck is normal supposed to mean, are you - writer of leaflet saying my DD is abnormal? What does that mean? How rude!

Anyway, a mad, hormonal woman's ranting, feel free to ignore me, I'll be ok again in about 18 years time!
, then again I could be a lot worse!

LOL at QueenDave!

TeeCee, you are right to feel sleighted by that kind of "information leaflet". It passes on too many negative connotations.

Yes, thank god all my DD are healthy. Thank god none of 'em are "normal"! They are actually bloddy nutters

yep, that is pure boolocks on the leaflet, you should feel pissed off at that. it's such a negative message.

This leaflet also talks of babies being affected by Down's syndrome. I don't like the negative image that portrays. My DD isn't affected by anything, she just has an extra chromosome.

It also says "If you decide to continue your pregnancy, arrangments will be made to talk to someone about the special assistance and support available to help you look after your baby". Jesus if I didn't know what it was really like I'd probaly be terrified at that - special assistence needed to help with with my abnormal baby. Not good, not good at all. In fact the more I think about it the more I feel he need to do something about this wording. Might come back to it when not pregnant though aye!

Well, I was going to suggest that if you had the energy for a fight, you could certainly raise/highlight the issue...but, I figured that you probably had plenty of other things to be getting on with right now....

This is the thing - pg women and their partners often rely soley on the information that their mw/gp provides. If they are simply handing out those leaflets, it's not surprising that it frightens people into thinking that it is some kind of sinister disorder.

(I'm glad my name made you larf - i hadnt realised the entirety of its connotations until after you posted tbh...may change back to vvvqv veryshortly...)

You know- my test results weren't that high (1 / 205, I was 29) but after I refuse amnio they posted me alreaflet

nothing else in envelope, just the leaflet

'Yuor Baby AHs Down Syndrome'

Thing is, if he had- he'd be more likely to be able to talk and develop social skills than seems likely. No guarantees to this childbirth thing

It's a great name, didn't realise it was you VVQ, hello love! Not only did the name make me laugh, and the way I say it to myself in a mad deep DAVE voice but it made me larf when you told Aitch to learn when to stop talking as well.

peachy!!!

Thats piss poor!

Its actually a good leaflet made by the (I think) DS association- just seemed inappropriate at the time

TeeCee

I've been on a bit of namechanging spree this afternoon at work (clearly I am not busy....) I was QueenVictoria further down your thread....(my previous incarnation before VVVQV, btw).

I hope you are feeling a little better now, anyway.

We must meet up at Hunkers, when she moves - check out her new place . I'd love to meet your gorgeous Lottie that I've heard so much about

Unfortunately, that would mean introducing you all to my shit-eating son, but, I'm hoping you wont mind too much??? He is very charming really.

TC, that sort of wording "affected by..." "suffering with..." is generally less acceptable these days but still more work to be done. But it doesn't have to be your job for now, I had no idea you were pg again!! Congratulations (unless I've misunderstood), what is going on with the SN crowd? Eidsvold, Fio and any others I don't know about?????

why does everyone find the idea of me being told to shut up so amusing?