Screening for Downs - does everyone do it?

[miamix]

Wondering if anyone would like to share their views?

I had my booking appointment yesterday and was given the option of screening at 12 weeks for Downs Syndrome. I am 24 years old and healthy, and to be perfectly honest screening wasn't something I had thought much about.

My first instinct was not to bother, because it will just make me worry even more. I am getting stressed about every tiny thing during my pregnancy as it is, and obviously high stress levels aren't good for the baby.

I was also wondering, if I did opt to go for the screening, and was told there was a high risk factor, is this necessarily always accurate (obviously prior to further testing) in the likelihood that the baby will have Downs Syndrome?

Did anybody not test? Why?

Any thoughts appreciated, thanks.

I didn't and these are my reasons:

• I would not abort a baby with DS.
• If initial tests come back with concerns the next step is invasive testing which carries a risk of MC and no matter how small that risk it just wasn't worth it to me.
• There are so many, many more syndrome, illnesses and diseases that cannot be tested for.

I know pleanty of people who don't test but I think that is driven bythe knowlwedge that they would keep any child whether that child had Downs syndrome or not.

I had basic testing with DD but primarily because I already have one child who is NT and one child with autism. I wanted to know so that I could talk to DS1 who is NT if he were likely to have another sibling with additional needs ( he was 10 at the time)

So I guess that is one of the factors. If you would not take any action as a result of knowing then that would probably affect your need to know.

Oh - and many congratulations.

I'm 38+3 and haven't had any testing done. It wouldn't have changed my mind about whether or not I kept my baby and would have just caused unnecessary stress throughout my pregnancy. Like you, I am a serious worrier and as I have had numerous miscarriages in the past, did not want to cause undue stress to me or the baby!

My reasoning is also related to the notion that I would not end a pregnancy where the baby had DS. But I have to be completely honest here, I didn't expect to be pregnant at 24 and I am wobbling a bit with my decision. My partner and I don't earn much between us and when discussing it last night, he brought up the financial implications that might arise should we have a baby that has DS or another type of syndrome/illness/disability.

I am still erring on the side of not screening because I would like to believe that I can stick to my beliefs here, but the reality of having to make the decision is actually a lot scarier than I ever thought it would be

Thanks for your responses LilRed and pagwatch.

Thanks Nikki.

LilRed - forgot to mention, I also do not feel the risk of MC is worth taking. That is a BIG thing for me. Pretty sure my mind is set actually. Interesting to hear people's views here

We didn't go for it because we would only have been given a risk score. We weren't going to have amnio/CVS due to the risk of miscarriage and wouldn't have an abortion if the baby did have Downs.

We did have the anomaly scan at 20 weeks because if something was shown to be wrong, it would be good for us to be prepared and in case the baby would need any extra monitoring or treatment.

Congratulations on your pregnancy. The only thing I would add to commments made above is that the testing you have is usually a triple test and this tests for other Syndromes other than Downs, such as Edwards Syndrome (which is usually fatal) So might be something to think about, if the triple test is what you are being offered.

If you do decide to go ahead with the screening, you will get a risk factor, i.e with your results you have a 1 in say 500 chance of baby have x Syndrome. If you are classified high risk, which I believe is usually around the 1 :200 mark, you would then be offered invasive test which are diagnostic (in other words give you a definite answer rather than a risk factor)

Good luck with whatever you decide and the rest of your pregnancy.

I didn't as I was 26 and healthy also like Lilred if anything showed up I wasn't prepared to take lots more tests, I just wanted to enjoy my 1st pregnancy. My MW didn't think it was neccessary for me as I was low risk. The fiancial side didn't actually cross my mind as I'd presume you'd get lots of help and support. At 24 I'd say you were a pretty low risk anyway. I'm 21 wks now and wouldn't change my decsion-congratultions!

I didn't because of the same reason's as other poster's. Also I've had my babies in my 20's so felt the risk's would be lower anyway.

I didn't for the same reasons as the other posters. I am 29 and my husband had not even heard of Downs and i showed him pictures - still a blank.
Although i did notice that the measurement was on my notes; it was just not discussed.

The reality is that more Downs babies are born to women under 35 but that's probably because fewer 'older' women have babies and also more older women get the tests and tehn decide to terminate.

Really even if your risk is 1:10000 there is always the chance you might be that 1.

I have had the Nuchal test recently as I am 40 and my risk came out as 1:80 which has really scared me even though the percentage risk works out at about 1.24%. I am going to have the Amnio because my DH and I have decided we wouldn't want to leave a downs adult in the world when we die and so would choose to terminate if the test reveals Downs.

That's our personal choice but I know many people who wouldn't terminate and so in that case I think the tests are pretty pointless.

If you wouldn't terminate for Downs then there really is no point worrying about having the tests.

It's standard to give you a triple or quad blood test which screens for a few different things, not just Downs. You don't have to have it. I didn't with first pg.

If you wouldn't want diagnostic testing with the m/c risk and/or wouldn't terminate anyway - maybe you don't need to have the screening.

It's very routine though and most women don't have an identified problems -especially not if you are only quite young.

Good luck with your pregnancy.

I was 25 when I was pregnant with DD1 and had the triple test bloods done without really thinking about it too much, just assumed they'd come back as 1 in 1000 or something and I'd carry on as normal.

I was utterly floored when they came back as 1 in 19. We had an amnio as we decided I needed to know whatever the outcome or I would worry throughout the pregnancy. I very much doubt that we would have terminated. The amnio was clear.

With DD2 I was 27. I didn't have the test. The week of uncertaincy and anxiety with DD1 was horrendous, especially knowing that I wouldn't terminate anyway.

No, I've never had any testing. I would not terminate for anything non-fatal, and so didn't see the point. My consultant was sympathetic towards this, and never pressed the issue.

I was 38 and didn't go for the tests, for basically the same reasons as others had mentioned.

We decided together that whatever we were given we would love and cherish regardless.

I think, for me, it might be different with a second child, although I'm not sure. It's not an option now anyway.

Congratulations too!

Its such a personal choice, and no one can tell you what to do. A good place to start is what would you do if the screening identified something? However for me, I jsut needed to know if there was a potential problem. Also the current screening tests can look for more than Downs.

I've just had a double CVS with my twin pg, as DH and I felt we had to be prepared if there was a problem as we have two other children. We decided that we would not have the conversation about what we would do if there was a problem unless and until there was, but we needed to know. A risky strategy perhaps, but in fact DH and I were on the same page anyway.

Someone I know also had the combined test and a potential problem was seen, she went on to have CVS and it sadly transprired that the baby would not have survived to term for various reasons, and she had a termination. Perhaps a good job she had the tests.

Congratulations on your pg and hope it goes smoothly, whatever your decision.

No, I chose not to have it. I fell pregnant at 35 and was told I was "low risk", however, I turned 14 weeks at my 36th birthday - which apparently then made me "high risk"!

But for me, this was a very much wanted baby and I would not have chosen to terminate for Down's. I would have driven myself bloody mental over the rest of my pregnancy though.

I did have the 20 week scan - and although obviously it's not an invasive scan - we both felt that our (high experienced) sonographer would've picked up any problems then. When we had a 4D scan at 30 weeks and saw his face, we knew beyond any doubt that this child is not Down's.

However, this does not mean that he won't have any other problems - there are a million things that are not tested for.

i havent tested i'm 23 and am at 'high risk' of mc and dont want to d anything that would make that risk greater. also i wouldnt abort a baby with ds, so it really does make no difference to me.

despite mw asking how i'd cope and asking if i'd really thought about the implications

congratulations on your pg

Hey miamix...
I had the tests but purely because we wanted to be as prepared as possible if it came out as a high risk result. We wouldn't have terminated, but just wanted to make sure that we could be the best parents we could be if we were to have a child with extra needs.
I too was really anxious at every niggle and twitch during the first 21 weeks of my pregnancy and had to try really hard to keep a lid on it... Try not to let it run your pregnancy. What will be, will be.
Congratulations!

Have you disscussed with your MW?

I ask as i lost respect for mine as she was so pushy where this was concerned, she kept saying 'You may as well just have it' I'm 26 so low risk and would not abort if the baby did have ds.

My advice reflects others - do what You think is right.

My MIL was shocked i hadnt tested and so were a few friends - my decision is my own and i would stick to it - but never berate others for this decision

congratulations and enjoy your pregnancy! x

I did, but only because it was offered and I didn't think it through. If we have a second (got to get the first out yet!) I don't think I would. It would affect our decision anyway, so why do that to ourselves? The only way to tell for definite if the screening came back higher risk would be a risky invasive proceedure, which I probably wouldn't have had. Leaving us worrying for the rest of the pregnancy for what may have turned out to be nothing!

As it was our screening came back fine, this all went through my head afterwards.

can I just point out in rsponse to a post further up the thread that it is "baby/adult with downs," not "downs baby/adult."

I didn't have any tests because I had no intention of terminating a pregnancy if the baby had downs. And tbh far too much emphasis is placed on the need to test, and subsequently terminate,for downs.

And tbh the testing process creates either a much more stressful pregnancy, or a false sense of security. There are far worse disabilities than downs that cannot be tested for in utero, so you could receive a clear amnio, believe that your baby is healthy, and end up with say, a severely autistic child two years down the line.

The reality is that nothing is certain.

Thanks all for these varied and interesting replies.

storm - It was discussed with my midwife yesterday but she did not put any pressure on me. She said I could sign the form then and there (which I did) and when I had decided one way or another to give her a ring and she would tick the appropriate box to make sure at my 12 week scan they did/did not measure as per my request, and also told me to make it clear to the sonographer if I did not want the screening.

At this stage I feel I will opt out, obviously after having discussed it in more depth with my partner.

Thanks again!

i had the tests and made a concious, well thought out decision to have them.
i could cope with a ds child, it was the spina bifida that scared me more and i'm not sure i could put a child through that (my choice re mychild - not preaching to anyone else)

but however op, don't worry too much - its something like only 1 in 1000 babies born have anything wrong with them at all.