Can I ask people's opinions on antenatal testing without it getting too sensitive / heated?

[FrannyandZooey]

You know when you need to decide if / what tests you are going to have at the scans and so on. Would people feel comfortable telling me about how they made a decision on this? I need to stew it over.

I had the Nuchal fold and blood test with both of mine - I was 35 & 37 so I was both times over the magic 35 years of age number!

Not sure what the % risk increase is.

I felt that the knowledge whatever way would help me. Both times I had low risk scores so although nothing in life is guarenteed I felt a certain peace of mind (as much as you can!)

Agree it is different 2nd time around though.

We decided not to have any of the tests apart from the routine scans. The way we saw it was that we wouldnt terminate regardless of the result so no point in worrying about it when we could be enjoying the pregnancies. Luckily we have 2 beautiful perfectly healthy girls.

My best friend is pregnant with her first and had the triple test which came out with a high risk result - she had further scans and everything looks to be fine but I'm sure she hasnt enjoyed her pregnancy as much as she would have had had she not had the test in the first place. Her baby is due in January and she has said that next time she will NOT be having the triple test as it caused her so much unneccesary worry (she is 23).

risk according to maternal age of DS

any test results will take your age into account. So given identical tests results of a 22 year old you'll still get a higher risk factor.

I had a test at privately at Bart's hospital for my last pregnancy. It measures nuchal translucency and blood markers at 11 weeks and then another lot of blood markers at 16 week and combines the results with mother's age. It is the most accurate non-invasive test (ie. less mothers who have this test are put into a 'high risk' category ( high risk for this test is 1:150 whereas for other scan/blood tests it is 1:250), and more pregnancies with DS are 'detected' ( over 85% of DS pregnancies are detected, compared to 80% for scan plus early blood, 60% for triple test and 50% for 20 week scan alone ).
I think that I wouldn't terminate a pregnancy due to DS but high Nuchal translucency are also associated with heart abnormalities and fetal infections, and to be honest, I wanted a really good quality early scan to (hopefully) put my mind a little more at rest, although I am very aware that countless things can happen to result in a baby who is not 'normal' in some way (and in fact both my babies were not 'normal', one was deaf and the other had talipes)

And to answer Expats comments about mosaicism - the cvs test is looking at placental cells rather than cells from the baby so it is possible (though rare) that there are abnormal cells in the placenta but the baby is not affected. An amnio looks at cells shed by the baby into the amniotic fluid so if 2 cell lines are seen to occur then it is more likely that the baby has a mixture of normal and abnormal cells.

I took the view that I wanted the baby and believe she was a person at conception - I discussed it with DH and midwife who said that none were conclusive and there wasn't a huge range of options and none appeared to be for the good of the baby. I chose only to have the early scan, to make sure pregnancy was viable, and a 20 week abnormality scan which was for the good of the baby. The later scan can detect heart and other major organ problems that need instant medical attention at birth. It seemed sensible to have that scan in case the baby needed help at birth. But the other tests would have worried me without actually offering very much in return. The margin of error is quite high with these other tests too.

Even the 20 week anomaly scan is not that conclusive btw. For example with skeletal dysplasias you often won't see anything until week 27/28.

I had the triple test with both of mine as I was planning on having them at home. Had there been a sizeable risk (in my opinion) of a problem, I might have changed my mind about the place of birth to give the medics more options if the baby struggled just after birth. As it was there were no worries, no problems and they both arrived at home.
As far as scans are concerned they only offered one dating scan at 12 weeks which I took out of curiosity to see my baby!

I refused triple test with both pregnancies. First time round dh was very keen for me to have the test and would also have wanted me to be prepared to terminate for a severe disability (he sure exactly what a 'severe disability' would have entailed though). I persuaded him round to my point of view by explaining how unreliable the triple test is and that the next step, if the triple test showed something 'irregular' would be an amnio, which carried a (to me unacceptably high) risk of mc. We'd already had a mc before conceiving dd1, so this argument worked on dh. I would not have been prepared to terminate a pregnancy anyway, except perhaps for something that was 'incompatible with life', but that sort of very extreme thing would have been picked up on a scan anyway. I did have a 20-week scan, because things can be picked up on that which are treatable, but better to know about (like cleft lip, and similar things) and I'd have wanted to be informed if my baby had that sort of problem.

With dd1 I had placenta praevia, so with dd2 I also wanted the scan to tell me where my placenta was and whether it was likely to behave itself! By the time we had dd2, dh had totally come round to my way of thinking about the triple tests, and he said that, whereas originally he had thought that he'd never be able to cope with a disabled child, having had dd1 he knew that nothing that could be 'wrong' with her could make him love her less, and that nothing would make him want to terminate a future pregnancy.

I should add that I have no religious reasons for not terminating, and am very much pro-choice, I just know that it's not a choice that I'd be happy with for me.

Good luck making this decision.

Sorry... that went a bit illiterate. I meant to say that 'he (dh) wasn't sure exactly what he meant by a severe disability' - i.e. how severe it would have needed to be.

I was 39 for my second child, and at that age the statistics can be a bit grim. i had a much higher risk factor for chromosonal issues (not just DS) than an "ordinary" 39 year old and went on and had a CVS, which came out clear. DD is now 4, extremely lively and, interestingly, has always been very high maintenance!

As older parents with a child already I think we felt that there were issues about having a child with disability which we could not look after for all of their life and which we may be putting a burden on an older child. I don't know - we never had to make that call. It did feel different about a second child.

The one thing it taught me - those bleak and very scary few days - is that you do what is right for you and sod what anyone else thinks. I think in our case - we are both lawyers - there was a very strong feeling of wanting to have all of the information needed to make a decision, even if we didn't know what decision we would ultimately make.

I had the nuchal fold scan, the 20 week anomaly test and a detailed scan of baby's heart later on. I had a higher-than-normal risk pregnancy due to having epilepsy and taking anti-convulsants so was more worried about neural tube defects than Down's, tbh.

Fortunately for me all the results were very reassuring. No idea what I'd have done if they weren't, tbh, couldn't think that far ahead.

Hi
I'm 40 and hoping to deliver second baby this week ....
I had the CVS test at 11 weeks
Fortunately for us results came back with full chromosome count

The Antenatal Results and Choices Advice line helped me decide what tests to do (I was 38 years old). Their number is 02076310285; advice line open Mon to Fri 10-5:30.

Franny, are you considering not having a 20 week ultrasound, or is it the blood tests / nuchal scan / amnio part you are thinking about?
I think the 20 week anomaly scan is worth having because for some problems (some heart conditions etc) it is much better for the baby if the condition is known about before birth so that appropriate emergency treatment can be arranged. It's rare but can make a huge difference to how well the baby does.
For me, we wouldn't terminate a pregnancy for Down's so I wouldn't want to take the risk of miscarriage with amnio. There seems little point for me in the kind of vague risk assessment that the bloods and nuchal scan offer given that I wouldn't want to have an amnio or CVS anyway. Having said that, I had blood tests this time around in a haze of horrible morning sickness without actually thinking about it.

I almost think it?s wrong for these tests to be available, because IMO they give people a false sense of security/ the ability to plan ahead. Ds/spina bifida are just two conditions that can be tested for, yet there are probably hundreds, thousands more that cannot. So while someone could go through their pregnancy safe in the knowledge of not having a baby with downs, you could still end up with a severely disabled child.

You only have to look at the sn board, and while there are posters with children who have ds, there are so many more with dc with other conditions, severe autism, cerebral palsy, global developmental delay.. and the list goes on, that they never had any idea about prenatally, and therefore did not have that ability to ?be aware/plan for the future?.

I didn?t have any tests apart from my scan at 20 weeks. I had no intentions of terminating a pregnancy, so tbh I didn?t see the point.

My mum terminated an unplanned pregnancy when I was 7 because she didn?t want another disabled child (despite being told that was unlikely to happen), so for me terminating a pregnancy would have felt almost as if I were denying a disabled person their existence in the same way my existence would probably have been denied had my mum had the ability to know of my disability beforehand.

But IMO it is a personal choice and people should do what is best for their family.

When I was pg with DS1 I was also 36 and declined invasive tests (and there wasn't much else then, 20 years ago) - we just had the 2 DDs, aged 5 and 2, and I felt we could cope with something like Down's (I had no idea then what other conditions might need to be considered).

When I was pg with DS2 I was 41, with older children aged 10, 7 and 4, and I did have amnio and would have terminated for Down's (sorry )

i had the tests cause as vvv says i wanted to be prepared

Goodness Franke, you're pg! Congratulations! How did I miss that?

I have hated dealing with decisions about antenatal testing, but since DS2 had heart defects and was stillborn (we found out about the defects at 20 week scan), for me they are a necessary evil. I don't think anyone really knows what they'd do unless they were in the position of knowing their child had serious problems, and even then an answer doesn't suddenly appear.
With this pregnancy I had a nuchal scan and the integrated blood test, which made me very low risk. But since finding out about a heart problem with this baby (although doctors don't know what implications it will have), I have had amniocentesis as well since Downs children often have heart problems too. Results were clear, which for me feels like one step down,a few million more to go. For me, I'd rather know. I don't know what I'd do if the results had been different. I wouldn't want to lose another child, but don't know what I or that child could cope with.
Testing aside, I DO think scans are absolutely vital.

We worry about our children from the moment they're conceived until forever!

I had a triple test with dd and a NT test with DS at 36 years. Both gave me reassurance as I came back as low risk.

With this one I had the NT and blood test combined (things have moved on!) However, much to my shock I have come back as high risk. I have decided (DH isn't so sure) not to have CVS or amnio as I know I couldn't terminate. So in a way I now wish I hadn't had the test done!

Currently building up to having another scan at 22 weeks. Knowing the results has and will continue to cause me stress thoughout this pg... as it will be my last I feel it is a shame that I am not able to enjoy it as much as my first two.

I've never had any tests apart from 20 weeks scan and i wouldn't do that if my DH wasn't keen to count limbs etc -we decided before DS1 that we wouldn't terminate for genetic problems compatible with life (both work/worked with SN). My reasons for not even being keen on anomaly scans is that I've met too many women cacking themselves over 'soft markers' found at 20 weeks that turn out to be nothing, also the research which found that knowing about some conditions at 20 weeks can lead to worse outcomes for babies

With DS1 I had:

6+6w scan, 8+6w scan, 11+3w scan (after bleed) and 20w scan. I had the early ones because he was conceived on Clomid and there was a chance because of adhesions and operations for endometriosis that I'd have an ectopic - they wanted to make sure he was in the right place.

I had the triple test, which came back as 5,000 to 1 or something. I didn't have the HIV test because I knew I hadn't been exposed to it. But I have subsequently had one for donating milk, which was clear.

With DS2, I had a 12w scan, a 20w scan, then growth scans once past 30 weeks ish - can't remember how many - another three or four?

I decided not to have the blood tests with him, because I realised after I'd had DS1 that it wouldn't have mattered what the result was - I wouldn't have had further tests. He was so hard to come by that I just couldn't have taken the risk. I'm not sure I'd have made the same decision had the result I'd had with DS1 been different.

It's such a massively personal thing. I hope that you reach a decision you're comfortable with, Franny.

not read all of thread but a number of people talk about "having the nuchal test just so as to know" - of course a nuchal scan tells you notihing, it just gives a risk factor.

If you really need to know whether your baby has Down's (which is what a lot of people worry about I know) then you need CVS or amnio, both of which are invasive and thus carry MC risk.

FWIW I was 39 when DS2 was born and refused a nuchal, mainly because of other people's unhelped experiences with them. Could have demanded an amnio (due to extreme age) but didn't want one because of risks/not wanting to terminate anyway. I don't think that's a naive view, no.