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

[becklespeckle]

I think I am pro-choice when it comes to terminations although it is not something I think I could/would do unless the baby had a very serious condition which was incompatible with life. I do however always have the tests done as I would like to know in advance of any potential problems so I could collect as much info as possible and prepare myself. Everybody is different though and I do have friends who would terminate if baby was not 'normal'. The thought of a DS child always terrified my DH until he met my friend's little girl, she is such a delight and completely changed his perceptions and made him far more open minded. I think ignorance and fear of the unknown is the root of the problem for some people.

[Woooozle100]

Hey Fio

Haven't been on here for about a week so didn't get all the fallout from that 'bully' thread - but reading it now just makes me think ah what a bunch of cunts - and I've resolved to stay away from any thread like that in the future. They make me angry - even though my own situation is complicated and I have had cvs - I just think what a waste of fucking time sharing anything about our children when probably most of the other posters regard it as an annoyance and a distraction from the main aim of reasurring someone to terminate and giving em loads of sympathy.

Its cack cos I used to think that like Beckle says, its a matter of ignorance and thus sharing our experiences might help break through this in some small way. But arses to it.

In a nutshell - I don't see how you were a bully. Just that the OP was a twat with all that 'get off my thread' stuff.

[Woooozle100]

Aye. Consider myself to be pro choice too but reading the guff makes me wonder why people bother having kids, with all the talk of being unable to cope with this and that; worrying over stupidly long odds of ds when the whole fucking thing is just a gamble anyway.

I had a terrifying thought today that my peanut might hit his teens and wear a gold earring / white tracksuit combo and swear more than me. And spit on the street. Ugghhh

How are things with you and bun? Aren't you due pretty soonish?

[Woooozle100]

Oooh best of luck Not many sleeps to go till 5th. How exciting!

I'm not due till 20th oct. Sounds ages but have been pretty suprised by how quickly its all gone. Finish work in 3 weeks so all focus is on that at the mo.

[bullet123]

Someone put up the link to this video on anothe site a few months ago. I think it is wonderful :

[gess]

That thread was ridiculous. I was told off being snipey for pointing out that the tests didn't test for lots of conditions ('queuing up' to point out waht could go wrong apparently ffs). And had no thanks for pointing out lots of factual information (factual in terms of chromosomes etc and what the test could and couldn't tell you). Like others here I would campaign for the UK laws to continue to allow termination for whatever reason so I'm never quite sure why what we say is so threatening.

ejb - agree about the odds- lived with much worse odds for ds2 and ds3 for a number of years in total before we knew they were all clear so find the whole 'but it's one in 99' thing weird. Especially when they could terminate that one and get a whole lot worse to deal with next time round.

Wouldn't life be dull if we knew exactly what was round the corner.

[aloha]

I have say, I interviewed a woman whose son had duchennes muscular dystrophy and had a termination because she found out her next baby had it to. She said she could not bear the thought of seeing two beloved children suffer and die, and also, could not imagine how she could physically cope with having two ever-larger, more paralysed children to physically push, hoist etc. Her son could not have been more loved btw.
I think that in her case having a two week wait or whatever before knowing if she could terminate or not was pretty awful, and an instant result would have saved her some pain.
I thought she was very brave.

[gess]

agree in cases like that it would be very helpful aloha- but I think its rare for people to enter antenatal testing (starting with nuchal) so aware and considered of all possibilities iyswim.

[Peachy]

I guess the odds of this one being 'imperfect' are high. that's something we've known since day 1, and had to factor in. You hear poeple going on about they ahve to wait in a queue for a nucha or whatever, and i think try waiitng until your little one is 3 before you know- as that's the age ds3 regressed. Then I pick up ds3, and I don't care (or ds1, except I can't pick him up now LOL)

I'ma nother who would canpaign for the right to terminate, I think its essential. But I think there's an assumption- when ds3 scored high risk the assumption we would have amnio then abort if definite was made extremely clear. What's wrong with just wanting to know, to prepare? But they were so pressuring us into the amnio, we felt they'd never let us be if it were a positive, and it was easier to walk away earlier.

[gess]

and that I think is the problem- you get the answer and you're suddenly expected to make only one decision. It's why I think knowing what you want to do before entering the testing arena is so important.

[eidsvold]

thank you for that link - I had not seen it before.

[needmorecoffee]

I was lying awake half the night thinking about the lady who's son has muscular dystrphy and her decsion to terminate the next baby.
Its made me very uncomfortable so I'll try to explain. None of us know how long any of our chiildren willlive after birth. 2 mnutes or 70 yearsor anything in between. When you decide to have a baby then thats the risk you take, that you might see them suffer and die. If that risk was too awfuul then no-one would have any babies. You don't know what the future brings but you can guarantee that a child's life is as full of love as possible, however long they have. Friend of mine had a little boy with serious heart problems. She lived every day like it mightbe his last and filled his life with love. I went to his funerallast year. He was 4. But she said those 4 years were worth everything to her, and to him. He had 4 years of family and love that wouldn't have happenend if he'd never existed. We could have all sorts of theoretical debates about what its like being dead but given that none of us know, how can one choose death over life? It might be worse. That lad had more in his short life than many people have in long lives and I've realised that its quality that is important and not length.
My daughter doesn't have muscular dystrophy but she is more physically disabled. She has no movement from the neck down and cannot speak. Her life expectancy ismuch shorter. We don't know if she will be with us tomorrow or for another 30 years (and thats true for everyone. Those shootings this week weigh on my mind) but if someone had said while I was pregnant how hard it was going to be, how I would struggle dealing with a paralysed child and hoists and lack of help I would have still had her. Because hopefully that person would have added about the joy and love any child brings, however tough it is for parents and how life islife.
Of course it hurts to see her face the world severely disabled but thats my problem and not hers.
A lot of that poormums decision might have been on the lack of help she might have had with 2 disabled kids and that reflects on society. People shouldn't have to die because its too hard to look after them. Our services are a disgrace
So while every one makes their own decison, I do find it disturbing to think babies are being killed because they are disabled. And I worry that some mums are being pressurised into it by doctors or society because 'hey, who'd want a disabled child' where the disability is touted as the hugest thing and the first thing rather than 'this is a child'.
I'm not explaining myself very well here but had to get that out.

[becklespeckle]

You explained it perfectly Needsmorecoffee and I completely agree that some people see the disability before they see the child.

[gess]

needmorecoffee - that's how I felt after seeing a website by parents who had had a child with patau's (trisonly 13). He was born after many years of fertility treatments (about 14 I think!) and lived for 4 months, but those 4 months were 4 months of love just poured into him and he died in his mother's arms. The website was a celebration of his life, it was amazing, and it changed the way I thought about lots of things (have come across other websites now that are similar). Will search later to see if I can find it.

I don't know much about muscular dystrophy- does it lead to pain? I can understand someone wanting to avoid suffering in their child.

There's a whole other issue around what constitutes 'suffering' though isn't there, especially when related to learning difficulties. But then I end up seeing both sides and agreeing with everyone!

[gess]

here's the website. He died in his father's arms - November 21st is impossible to read without crying! But what a brave family and what a difference he made to people (me included, never met him, but the website changed my thoughts about lots of things surrounding severe disability).

[needmorecoffee]

Thanks for posting that site Gess.

[Blu]

I have learned so much since reading MN, and I think I have widened my views on many things. For e.g I accepted amnio at 20 weeks (because of what I now view as ludicrous emphasis on 2 'soft markers' and tenuous link to minute possibility of various non-viable trisomies), and had one of the non-viable trisomies been present, I am sure that, with broken heart, I would have terminated. But now, having read a post once from Frogs about a relative who gave birth to a child she knew would die within weeks of birth, and what that contributed to the family that a termination would not have, I would think a lot more carefully, and would be more likely to make a differnet decision. But no conversation or case study like that was made available to me in the 15 mins counselling we were given at the hospital. There could have been an easily accessible weblink or folder of parents stories alongide the regulation box of tissues. The possibility of DS was raised -I had worked with so many children with DS, and would not have terminated, but found that DP still thought that children with DS 'usually' died aged about 13 (as in the olden days) and would have been making his decision on that basis had I not been able to direct him to more up to date and factually correct info.

Of course parents of children with disabilities go with what they get, as all parents do, and love their children with all the love there is to give - why wouldn't anyone? We love our children for what they are, whatever that is. BUT that doesn't always mean that if we could make the world ideal we wouldn't wish for all the love without the challenges, restrictions and what are sometimes undeniable sadnesses. And I suppose that in early stages of pregnancy, some parents still feel they are working towards an ideal world where they can 'plan'. It is different to make a decision about a child you will have in the future, than about a child you have here, and for keeps.

I have sometimes found myself wondering about adoption procedures, and the way parents are able to say what disabilities or impairments they would accept, and which would cause them to decide against adoption...and that if you are a biological parent you may find that a child with that condition is exactly what you get, so why not leave adoption to a similiar lottery?

I'm absolutely not advocating one way or the other....it's a discussion about how we relate to our mortality, or lack of control over forces which are biological, reproductive, know by our clever clever brains but still outside our human control.

I can 100% understand why these breezy blithe new reports are upsetting to parents of children with chromosome conditions, and 100% agree that people are sucked quickly and unpreparedly into testing. I thinki MN is brilliant for getting people to think a bit more before they test.

[legalalien]

Just thought I'd add my experience (mostly to get it off my chest), without attempting to express a view on the "rights and wrongs" of anyone else or on any particular condition.

I knew from an early age that I had a genetic condition that would affect 50% of all the children that I had. In male children, the condition would result in still birth at term. In female children, the outcome would be variable (and unpredictable), with worse case scenario involving blindness, deafness, mental incapacity, hairlessness/toothlessness/epilepsy and problems with major organs.

It's an "orphan" disease, so not high on the priority list for testing - growing up (and into my twenties) they hadn't identified the chromosome - so no antenatal testing. I made the difficult decision that if no test was found I would not attempt to have children.

When I was about 30 they discovered the relevant chromosome and were able to test for it antenatally - CVS or amnio - and after a lot of thought we decided to try for a baby. We knew that we would terminate the pregnancy if it was an affected male (since there were no cases of surviving with the condition), and really didn't decide what to do for an affected female. We just crossed our fingers

I went in for the CVS and found that my pregnancy was wrongly dated - so told to come back a week later for the amnio. Then there were problems with the amnio test (blood contamination), and I ended up getting the "all clear" result at around 24 weeks. Those 20 weeks of pregnancy (after I realised that I was pregnant), were easily the most stressful time of my entire life. I was either at work or crying my eyes out. The depression was very severe.

If I could have had the results on the same day it would have made a significant difference to my life and the way I felt both before and after my child was born. I wouldn't wish my waiting time on anyone. I would not even consider going through that again.

buzzy - let me know if you want any input for your article - although my experiences were here in the UK, I have a mean kiwi accent!

[Peachy]

Gess, I remember reading a similar article about a baby with edwards who lived 5 months after birth (haven't read your link- bit too hormonal LOL). It does present a strong alternative viewpoint BUT I could understand a family that did make a decision to terminate a child with a very limited life expectancy. My cousins child was born with a heart condidiotn that was missed on a scan and caused a heart attack at 24 hours old. He was supposed to have a tranplant at 13 but deteriorated before, they couldn't get him a heart and he died from MRSA after a 'minor' procedure. The loss of that child completely destroyed that family, the marriage didn't survive and his 3 siblings ended up not only with divoprced aprents, but a very angry spilt where recriminations are still constant and virulent a few years on . I think in such a situation, the ability of each family to cope has to be taken into account- had the condition been picked up on the scan, I don't think they'd have proceeded with the pregnancy, and I think that would have been right for them, as extremely young (20) parents of 3 children living a farily tenuous existence financuially and maritally.

My Mum had a termination for medical reasons, after several stillbirths- I can't imagine how it must ahve hurt. She was told the rubella she contracted would have made her baby unviable 9this was pre-scan). We noe know of course that the baby could have been OK or suffered a wide range of relatively minor disbailities 9or indeed have been unviable as she was told). Mum doesn't regret it though- after watching 4 babies die at 28 weeks, she felt she couldn't put herself through it (in some ways it was a bit of a miracle as the termination caused- well we don't know, but aftrwards mum ent on to have 3 babies at term straight off, i am the eldest).

[Davros]

This is a very emotional issue but I think we need to be careful not to assume that everyone on SN would not terminate if they knew about a disability/illness before birth. Those of you who have been around MN long enough will remember that I did have amnio with DD and I WOULD have terminated (no question) if anything had shown up. I know full well that not all conditions can be tested for, there are no guarantees, NT children can turn out all ways, all sorts of things can happen, but none of that would have changed anything. Someone I know made the assumption that this decision would have been closely related to the lack of support and services we have received for DS but that is NOT the case, I can't really complain at all about that, although it has all taken a lot of work on my part. I also agree that we can give any of our children as much love as possible and try to make them happy as possible for however long they live..... but that is not actually true when you have no idea who will care for or about them when the get older

[Peachy]

I agree, Davros. I hate the idea that ds2 will be left with ds1 and ds3 to support (ds3 probably pretty much completely, ds1- ? probably leave home but i can't imagine him functioning very well, tbh. My honest beliefs involve prison but there you go)

Would love ds2 to marry and move away from the boys, far enough to see regularly and close enough I don't have to go without him for too long LOL