New test for antenatal testing for Down Syndrome

[eidsvold]

Just came across this - developed at the hospital where dd1 was born 5 years ago. IN fact today 5 years ago was when we finally got to bring her home.

not sure how I feel

actually do know

[buzzybee]

Thanks for posting this eidsvold.

Having been through quite stressful times recently and in the end wished I hadn't even had the nuchal screening test done (decided against amnio despite quite a lot of pressure from medicos) I do have to agree that it would be desirable to have quicker results from an amnio for those who decide to have one. Its all stressful enough without having to wait 3 weeks for a result.

I'm thinking about writing a magazine article on the topic of ante-natal screening in New Zealand as the whole experience has made me quite angry. I'm not a journalist but I reckon I could get one of the women's mags here to publish something. Just want to provide other women out there with some of the info I managed to pick up from about 10 different sources - and mostly NOT from doctors, midwife!

[eidsvold]

fio - i rant to dh, i write lots of replies and delete then. BUT best of all - I know those people are missing out by not knowing dd1. I go and do something like pick her up from kindy where the kids and teachers adore her.

it is terribly vague. Interestingly one of the old bosses of Southend Hospital ( also where dh worked at one time) has a daughter with down syndrome and he and his family are very active in ds groups etc. They were fabulous in supporting us through those rough early days post antenatal diagnosis especially for dh.

I did post in sn fio figuring those who came on would be somewhat sympathetic to where I stand.

I think what upset me was the notion that it was 'cost effective' and the other idea - early on so as to make it easier to terminate. that is what saddened me the most. Am going to point article out to dh and see what he thinks and if he knows the doc.

I am going to try and find out more.

[eidsvold]

fio I also wondered if it was anything along the lines of the one that is being worked on here in Aus - takes a cervical swab to detect down syndrome.

[eidsvold]

that news article is very misleading

hospital news release

very interesting reading.

[buzzybee]

Absolutely agree about the point you make in respect of cost savings and making it "easier to terminate". The reality tho is that for people who choose to have an amnio it is stressful waiting for the result. For me I decided not to have the amnio because (a) I was pretty sure I wouldn't terminate regardless and (b) I really didn't want to give others the ammunition to put pressure on me to terminate if the result came back positive. (I had a 1:21 nuchal fold result).

In fact at the time I was told it would take 3 weeks for the test result to come back and if I'm honest that was probably another factor in the equation.

[gess]

Results on the same day.... I can see the advantages but also the disadvantages. No time to really change your mind/come to terms with what might be. OK if you've thought about it before, but I'm not sure that many people do weigh stuff up until it happens iyswim. I wonder about the counselling as well, never having been through it obviously but get the impression (from talking to others) that its often about coming to terms with a termination rather than discussing whether that's what the mother really wants. I know someone was told she was 'selfish' for wanting to progress with the pregnancy - but can't remember where I heard that, perhaps on here.

Bumped into mad old neighbour yesterday. Last time dh bumped into her she was telling him (poor dh) about her dd's termination for DS because 'she had to think about the other child and her career' - whilst ds1 was standing there!!!! Perhaps just a little crass! Yesterday she told me she'd been around ds2's school and thought it was dreasful - pmsl- we're very happy with it! Talk about never considering who you're talking to.

Do you still go and talk to people who've had positive results edisvold? I don't know how you do it, do you have any couselling or anything on offer to you for doing that. It must be very difficult at times.

[Aitch]

disgracefully badly written article, imo. why the message about termination? why not equally say that it will give parents of babies with DS more time to prepare?
it was probably written by some spotty 19-year-old who's never thought about pregnancy or parenthood in their life.

[expatinscotland]

Damn, gess, I can't believe she said that to you!

[geekgirl]

woop-de-fecking-doo - 'search and destroy' of our children is being made even easier - what a crappy BBC article

at least the hospital press release was more neutral, which is v. good of them.

It just all makes me so and I can't help thinking that a lot of people are so fecking stupid and naive - all the bolleaux about 'knowing the baby is perfect' if the amnio comes back clear.

People can think whatever they want, but the brazen, unashamed crassness of some posts re. DS & prenatal testing still surprises, saddens & angers me. I can cope with it now, but I remember when dd2 was tiny and I took her to the GP for something or other, I ended up breaking down in tears and sobbing something to him about how one of the hardest things was knowing that most people feel a child like her should have been killed in utero.

That horrible, horrible 'Rosie' thread from 6 years ago still sticks in my mind rather sharply it is often hailed as an example of how 'unjudemental' and 'supportive' MN is when someone terminates due to DS - yes, because it seems that 90% of the posters were sooo eager to proclaim that they would do exactly the same with such a worthless and discardable life.

And whilst I am at it, does anyone else find it freaky when a baby who was killed by her parents due to not being quite up-to-scratch in the IQ department is then dressed, cuddled and named post-abortion, with lots of declarations about how it was done out of 'love'???????? Obviously I don't love my dd2 enough.

[geekgirl]

(good job SN is 'hidden' )

[Peachy]

I think- if you are going to do the test, ojne that means you don't have to wait 6 weeks and then maybe repeat because of cultures- well sadly if you're going to terminate, the earlier the better I guess. And if you're not (and not everyone does, if we had gone ahead with the amnio it would have been a need to get answers, no chance of termination) then waiting is something that people can just do without.

I presume that one of the syndromes it can test for is Edwards (haven't read all the inks, just the article in the times yesterday). And I guess maybe the trisomies thata re incompatible with life? I cn truly see the advantage of an early dx there- a friend was told by scan / bloods etc that they were rpetty sure the baby had Edwards, hr Dh was 'abort- Now!', she waited against his wishes and the baby 'just' had a faulty kidney and a hand abnormality Is absolutely fine now. But she ended with severe depression after the long wait, a quick result may have saved her that.

Not for me though.

[expatinscotland]

So many conditions can't be diagnosed antenatally.

There are so few guarantees in life.

A perfectly healthy child can unfortunately become unhealthy in a flash.

It's sad, sometimes, to think how somehow many folks just seem to feel the path should always be smooth.

Imagine how boring life would be if you always knew what was going to happen.

[emkana]

It is a process though isn't it. When I was first pregnant with ds and they said he might have Down's I went through a phase feeling I couldn't cope, couldn't go through with it. By the time I had the amnio I did know that I would definitely carry on with the pregnancy, but I had gone through a lot of tears. Then it was all turned on its head when it slowly dawned on me that the amnio does not give all the answers and that actually there's a whole range of other things out there. Now I see all the antenatal testing malarkey with a very very weary eye indeed.

[gess]

geekgirrl- the 'done out of love' line freaked me out too.

Even the whole edwards pataus' thing isn't completely straight forward is it? I always thought it was a total no brainer- not compatible with life, until I came across some websites and found that that's not quite true. I hadn't really even known there was any other option (thought it was like anencephaly), and did think how horrified I would feel to discover those website having been through a termination. Think that would have caused me massive grief.

I do think that people are entitled to do what they want, although I would rather our neighbour didn't feel the need to tell us about it! but there seems to be one accepted message from society- that it's 'better' to terminate - and of course everyone thinks like that which is why its ok to tell us about the career and the other child when ds1 is standing there (because obviously he's a burden and makes our life terrible and given half the chance we would of course got rid of him )

[gess]

my 'include SN' button isn't working today. Do you think MNHQ have hastily dismantled it?

[gess]

oh I was feeling safe for a moment.......! First time its not worked. I don't think I'll point it out to MNHQ just yet.....

[thomcat]

Geekgrrl - you have put it into words so perfectly and is exactly how I feel.

Fucking shitty fucking tests - wish they didn't exist, let alone are getting improved.

'Search and destroy' Yeah, that's it in a nutshell. I agree with every word of your post.

Feel defalted

[Peachy]

Did anyone see the actor with DS in Holby last night? Extremely postive role I thought (and my hormonal self burst into tears LOL, but hey I can do that at ANYTHINg right now .....)

[needmorecoffee]

Good post Geekgirl. All this stufff about cost effectiveness just shouts out 'we don't want people like YOUR daughter' to me.
Any my DD became brain injured at birth so untestable anyhow but I know there's some out there whpo advocate 'terminating' disbaled babies even after birth.
Its scary.

[gess]

oh god yes there's that academic isn't there who lectures on that. What an idiot.