why the difference in results- downs syndrome tests?!

[dobbins]

Hi- just a bit confused and after some advice. I had a nuchal fold scan at 11 weeks where my odds of having a baby with downs syndrome where 1 in 3,000. I've just had my 16 week blood test for spina bifida and dwons syndrome (again although I didn't know this was happening). The results for this latest test came back as a 1 in 350 chance of having a baby with downs syndrome. I don't get it! Not overly concerned but would be interested to hear what other people's thoughts were on this or own experiences.

I think they combine the result from the fold test with levels in your blood and other factors such as age to give an overall risk. I am utterly apalled that the test and the results haven't been properly explained to you. You can ring your midwife to go over everything.

Thanks- will ring midwife to explain why there is such a difference. I wander which one is more accurate etc....

I echo Northernlurkers concern about lack of info' about this from the midwife BEFORE you took the tests. I've just got a grant to conduct research into midwives perceptions of their role in antenatal screening and from my pilot study fear that this is a common occurence
On a positive note, glad you're not too concerned with the results as they are certainly both 'low risk' , but agree you should contact your midwife for more info'.

Oh and the nuchal is far, far more accurate than the triple test which has a recognised high false positive rate..

When cmw booked me in she mentioned having the down test and said if you are 1 in 200 at risk you have to have a amnio. so we have decided not to have any downs tests at all.

The nuchal scan checks the nuchal fold as well as blood tests whereas the triple test checks 3 hormone levels, taking into account your age, weight and how far along the pregnancy is. As others have said, the nuchal scan is far more accurate so I'd just go with those results. Not sure really why they had you do both tests.

You don't have to have amnio. They might recommend it, but you have every right to refuse.

tegan, no-one can make you have an amnio

but it is worth thinking about what you would do if you came back high risk, i don;t think 1 in 200 is high...but low risk is not the same as no risk, so definitely worth thinking about the whys and wherefores of testing.

agree with NL and diege that you should not be left feeling like this

there is website called ARC that helps with ante natal test results

diege, taht sounds like interesting research !

Tegan (just being nosey!!) did your MW say you would HAVE to have an amnio or would just be offered one with a 'high risk' result??

I had a 1:50 result and was offered an amnio or a CVS test. I didn't have either.

When i spoke with cmw she explained it in alot of detail about what numbers are high risk and so on so dh and i spoke about what we would do if our child was at risk and decided that we would never have an abortion so why bother having the test.

My mil then proceeded to tell us how selfish we are and that if our child had downs it would need to be put in a home before we died. i'm only 30 ffs

Hi Lula!! Yes, it's becoming my life's work, with the bloody ethics and research governance approval process so drawn out - should finally be ready to get the interviews done come June, and will be interesting to see find out what midwives themselves feel about screening, etc, etc. Have published already on how pregnany women perceive screening results, so should be interesting to see what role midwives play in the whole process [sorry for hijack dobbins

Diege

she worded it that if we had a 12wk blood test that was within a certain risk number we would need another blood test at 16wks and if that came back within another range of risky numbers an amnio would be arranged for when i was 24 weeks and the risk of mc would be 1 in 100.

Wonderful MIL Teagan

is it only published in proffesional journals or can i have a read?/

tegan, it is always up to you to decide what tests and procedures you have or don;t have

if the risk of miscarriage is 1 in 100 then that is twice as high as the risk of 1 in 200 of your baby having downs syndrome, so it makes no sense at all to take twice the risk.

yes, your MW has a duty to advise whta tests are avaialable and the risks and benefits there of, but you ccannot be made to have any of them

Hmm, seems like she (MW) had it all worked out then without informing you about the false postives etc..

mil also is very forthcoming in the fact she hates the names my dh chose for his dd's.

Well we have decided not to have the downs test and we are going to read up what other bloods they will want to do as their may be more we refuse.

You're welcome to have a read Lula . It's a book chapter in a edited collection called 'Risk and the Everyday', but if you e-mail me I'll happily send you a copy of the chapter when I'm back on my work computer next week (it's [email protected])

dh's cousin had loads of tests for everything going (you can never be too careful is her moto) and every test she had came back as not at risk of anything but when her ds was born slowly she noticed he wasn't reacting, it turns out he has a chromosone deficiency and yet this should of been picked up on at least 2 tests she had done

i might be wrong but mosaic chromosomal disorders dont; always get picked up

as i said earlier, low risk is not the same as no risk.

i had the triples test both times, but not nuchal scan as i was under 30 both times, so felt it was not necessary. i felt that if thing came back high risk, forwarned was forearmed, adn would have spent the rest of the pregnancy preparing

diege, i will email you