A risk-free blood test for Down's syndrome in pregnancy

[emkana]

apologies if there's already a thread on this

I had no testing with any of my children. Ds1 and DD1 both have cerebral palsy but this could be picked up from tests anyway. when pregant with dd2 they asked if I wanted tests, I said 'you can't test for CP and I wouldn't anyway' because I felt that I had and something showed up and I did terminate then I would be saying that dd2's life wasn't worth it, and it would say to DS1 and Dd1 that their lives were a bother IYKWIM.
I am not sure I have worded that right, I hope you understand what I am saying

couldn't be picked up with testing

wheresthehamster - not sure if anyone answered you, but I wondered that too, so I Googled. According to wikipedia, it's Down's Syndrome in British English, so presumably the term Down Syndrome is American?

That's interesting. Thanks

I thikn it should be Down's syndrome as the condition was named after the man who described it. (John Landon Down?- something like that). Perhaps years of comments like 'she's got a Down's' have made it offensive iyswim.

blueshoes- I agree there are health advantages. I'm just not sure whether you can ever psychologically prepare yourself from something with as broad a spectrum as DS. Either it could be far better than expected, or equally far worse (like any NT kid I guess- we never really know whether they're heading for pillar of the community or drug dealer do we?). And i don't think you can ever prepare yourself for the worse scenario. If I had been shown the school that ds1 attends when he was a baby I would have been sick on the spot. I couldn't have imagined a time when a) I loved the school and b) found the kids within the school nothing short of brilliant.

It was too far from my experience. I would have thought in terms of coping, rather than realising there's lots about ds1's condition that I enjoy.

And I could never have understood the love would be exactly the same.

Mind you its the same now. And I really advise anyone going for antenatal testing to know what they would do before they get on the conveyor belt. Otherwise it ends up sooo confusing.

when I meant prepared I was thinking more in the sense that Blueshoes meant than psychologically.

I'm a bit concerned about this bit of the report -
'The experimental procedure, developed in Hong Kong, has been shown to diagnose 90 per cent of Down?s syndrome cases in a small trial, while also correctly identifying 97 per cent of foetuses that do not have the condition.'

So 10 per cent of fetuses with DS weren't diagnosed and 3% of 'non-DS' fetuses were diagnosed as DS. Better than the best screening test available at the moment (85% for nuchal +bloods) but this is being 'marketed' as a diagnostic test so should be much more accurate than this IMO.

Pressed Post too soon - It does say in the report that it's accuracy would need to be improved in order to use it diagnostically - just shocked me that they would publish it as diagnostic when it isn't yet.

I welcome anything that can provide parents with more informaiton in order to come to an informed decision...what ever that may be for you.

I do however, have strong ethical dilemma about this type of testing...considering how poor our national stats are about continuing with pg once DS identified...a little scared that we will in effect be exterminating a group of people who have as much right to life as you or me

My bloods came back as 1:38 with DS and I was scared to death...1:38 sounds really bad...but if someone had said "well that means you have a 97.5% chance that everything is fine"...doesn't sound so scary does it!!!
I chose to have the amnio because I wanted to know one way or the other so that if my baby did have DS I could make mental/practical preparations...I don't like surprises.

chilledmama thats why we did not get the test - I always said that if the result was posative that we would continue - however I figure why put tempation there - would I really be stron enough if we had a DS result. My cousin has downs, I can see that the love is the same, but I also see the amount of work that my Aunt does, so in the event of a ds result would I truely be able to push ahead or take the other path and refuse the right to life??

I can't/won't comment on others choice but the heartache for me came when my DH said he would like me to consider termination...so I did...I considered terminating our relationship...that was stressful...when he realised the direction of my dilemma he soon got on board. I just couldn't justify (to myself) terminating a pg for something other than a terminal condition. Interestingly, we had exellent councelling from the PCT prior to Amnio decision and that involved the reality of having DS child, not just the romantic notion that all people with DS are kind and loveing people...