Anyone opted out of triple test Downs screening?

[PetShopGirl]

We did, and now I'm not sure whether we've done the right thing or not.

I hope this won't be too long but probably need to give a bit of background. I will be 14 weeks tomorrow and this is my fifth pregnancy with no surviving children. We lost our first pregnancy at 11 weeks to a missed miscarriage and then terminated the next three at 22 weeks, 12 weeks and 12 weeks due to a genetic disorder incompatible with life. The problem was picked up later in the second pregnancy as we had the standard dating scan at 12 weeks which wasn't looking for any issues, the equipment is less sensitive etc - then everything went wrong at the 20 week anomaly scan. For the subsequent pregnancies we were seen by a fetal medicine consultant at 12 weeks and the problems have been clear immediately. Although the doctors/geneticists haven't been able to locate the exact gene responsible for this, they were fairly certain that it would be an autosomal recessive condition meaning that with every pregnancy we would have a 1 in 4 chance of having an affected baby. I, of course, managed to convince myself that we would never be able to have a healthy pregnancy. They (docs) thought we had probably just been extremely unlucky in hitting the 1 in 4 on three consecutive occasions but couldn't guarantee it.

So, fast forwarding to this pregnancy, the usual total pressure and stress for the weeks between finding out I was pregnant and going to see the consultant, Sword of Damacles hanging over our heads etc. I even told work that I was unlikely to be in for a week following the appointment as I was so convinced we would be going straight to termination. Anyway, by some miracle, our consultant was not able to find any problems with this baby and is quite convinced that the genetic problem has not presented. As far as he is concerned we are now back at 'a level playing field' regarding our risks for this pregnancy. We had to go back and see him a fortnight after the first appointment, when we would need to decide whether or not to have Downs screening (this appointment was last Tuesday). DH and I talked round and round the issue for practically the whole fortnight but just couldn't get past what we would do if it came back high risk. Neither option of either having an amnio and him sticking a huge needle right next to the only healthy baby we have ever seen on a scan, or not having an amnio and the additional stress of then carrying on knowing we were high risk seemed acceptable to us.

Because of all this we decided not to have the testing, but now I'm wondering whether we've done the right thing. When I've been pregnant before, this triple testing was only available privately and the 16 week blood test was very much 'opt in'. Now that it's an 'opt out' scenario I can't help feeling like we've been reckless and should have just gritted our teeth and got on with it (I'm by nature a very compliant, biddable patient!). BUT I still can't get past what we would have done in a higher risk situation (I will be 37 on due date so relatively likely that we would have a higher risk). I feel like if this were a 'normal' pregnancy and didn't have our history we would just have gone for it without thinking much more about it, but this pregnancy seems so precious and fragile that the thought of putting it at any risk just for our own peace of mind just seems too much.

Sorry for going on, but I guess I'm just looking for reassurance that we might not have been the only ones to have opted out. Or have we been totally stupid and should we go and have the 16 week blood test instead?

Thanks for reading this far - sorry to go on.

I was 40 when pregnant with DD and we didn't do any screening other than me frantically looking for soft-markers on DD's scan pictures. My question to myself was "would I terminate if DD was downs" and the answer was no, so I decided against testing as it would not have changed anything.

The 'risks' of Down's and other disorders are very small in a normal pregnancy for a 37 year old. Can you have a chat with your consultant? Perhaps s/he can put your mind at rest about this.

At the 20 week scan they look for soft-markers, such as shape of skull, heart formation, length of thigh bone, nasal bone, etc. and these signs, whilst not 100% accurate, can give a good indication of normal pregnancy. This would be less invasive for you and only a couple of weeks more to wait.

We too have decided not to have any Downs screening. I will be 37 a few weeks after due date too so we are the same sort of age.

My reasons for opting out are quite straightforward. I don't want to have anything which shows increased odds of having a baby with Downs becuse I really don't want to feel like I should go ahead and have an amniocentesis which I believe carries significant risks.

Even if we had a child who was diagnosed with Downs I wouldn't consider a termination anyway. The tests for me will just increase my stress levels. I am just hoping for the best!

Gosh - firstly can I say big unmumsnetty hugs to you and DH. What an ordeal you have been through to get to this point.

I'm currently 16 weeks pregnant with first DC. We weren't able to have the test at our NHS scan and were offered the blood instead as the baby wasn't in the right position. We decided to have the test privately - not necessarily because we would have automatically terminated the pregnancy but more because we wanted tO be prepared ASAPif there was an issue.

I completely understand why you have opted out but I suppose you may want to consider the 16 week blood test if you also felt you would prefer to know in advance. If not, I think you've done exactly the right thing.

As a final point, when we had the unsuccessful NHS scan, the sonographer said she couldn't complete it as the baby was in the wrong position but that from what she had seen, all looked OK. I understand that the absence of a nasal bone can be an indicator of down syndrome and I wonder if your consultant has looked for this when scanning you and might have indicated if he or she thought there was something worth looking into that concerned them? It might be worth checking with them as it might give you some reassurance?

I was 40 when pg with DD2. We did have the triple test, and got called back because I was high risk.
We had the amnio tests to be prepared. No, it would not have changed our minds, but I am a bit anal I think, and just wanted to prepare my family for what would be a change in circumstances. (Not necessarily for the worst, btw, just different.) As it was, she had, and has no symptoms, although may be dyslexic, but that is probably totally unrelated and is not a great issue once we know and can put support in place.
I always remember the consultant saying after the amnio 'look at that baby, this has not bothered (the baby) at all' while me and DH were weeping messes on the floor...

We didn't have any downs screening. The nuchal fold test is the more accurate one, the test at 16 weeks isn't so accurate,though of course if the risk came back high they would do an amino.
I will ask them to have a good look tomorrow at my 20 week scan for the soft markers like worldgonecrazy says, but mostly so I can be prepared if something is seriously wrong. I am holding on to the thought that this baby is meant to be, and blindly trusting that it will be ok!
You have been through such a lot already, Is there a midwife or doctor you can phone for non judgemental advice, given your history?

PetShopGirl - firstly congrats on this pregnancy and I'm so sorry about all the heartache you have had so far.

If you are on a level playing field now as your consultant said, seriously don't worry about not having tested. I am 22 weeks pregnant (last pregnancy ended at 12 weeks from missed miscarriage) and I haven't had the triple test with either pregnancy. I have a severely disabled Downs step-cousin and my husband has a mildly disabled Downs second cousin so I'm aware of both ends of the spectrum. We wouldn't terminate so we didn't think it was worth knowing as there is nothing you can really do differently.

shinyblackgrape - thanks for the hugs. Yes, it does feel as if we've been through the rinser a bit! When we went back for the second appointment where we chose not to have the screening, the consultant did another scan anyway to just check that everything was still looking okay. We'd pretty much said beforehand that we weren't going to have the screening, but he did say afterwards 'I was a bit naughty and took the nuchal measurement anyway just in case' [and I assume may have looked for the nasal bone...?]. Because I'm such a wreck generally when it comes to scans I was still shaking and not able to believe that things still looked okay and didn't want to ask whether the measurements he'd taken were okay (plus it would have then kind of defeated the object of choosing not to have the testing). When I said we still didn't want testing he said 'fine, I'll throw them away now then'. It has bothered me a little bit that he knows what the measurements were and whether they were within the right parameters or not, but I'm now desperately grasping on to the fact that he was quite jovial in the way he said it (using the word naughty etc) and that perhaps he wouldn't have said it like that if he'd thought it didn't look good. He's generally always been very serious with us, as you can imagine, so it was a bit out of character.

ellangirl - I do know a few doctors/medical types (my Dad is a GP, Mum a nurse etc) but the problem is that they quite rightly can't/won't tell us what the right thing is to do. Our consultant gave us a general background risk at 37 of 1 in 200 and I guess when we've been used to at least 1 in 4 this seems pretty good. But then I suppose it's all fairly meaningless until you know definitively one way or another whether the baby has any of the trisomys screened for. However, the midwife who was present at the scans (and who has been with us throughout our previous pregnancies) did actually say privately that she was pleased that we weren't going to go for it. Again, because I was such a wreck I didn't ask her why she though that - I think I really need to try and get a grip!

We will be going back to our consultant for the 20 weeks scan (and about which I am already getting terrified...), so I'm sure he will have as good a look as he can for soft markers etc.

The midwife is probably pleased you didn't do it because she wouldn't want to see you worrying when everything is most likely fine. It must be so hard trying to trust that everything might just work out this time after your previous pregnancies. Look after yourself!

Hi pet so sorry for your ordeal .

I am currently 19 weeks with dc2. DH and I decided against the testing , for both pregnancies . Firstly, I can be quite a worrier and for me not having them is less of a worry than having them . Secondly , any type of disability would not change our mind about continuing with the pregnancy .

I believe that with all you have come through to have this baby , if the baby has a disability , you will cope magnificently , and will love and care for it with everything you have . Only you can know for sure , but in my opinion , you have done the right thing .

HI I am sorry for what you have gone through.

I will be 37 3 weeks before my due date and decided not to have downs testing as I couldn't handle the stress of waiting form the results and the possibilty of getting probabilty results then having further tests. I am not very good with stress and worry and have had a really hard time coping with stress in general just before this pregnancy. I didn't have the tests with my first baby either but thought I would possibly have them with this one but at the last min I couldn't go through with it.

I wish you the best of luck with this pregnancy. It all sounds very positive to me!

I have no wisdom to add other than the words of my obs who said that there's no point in having a test if you aren't sure what you'd do with the result. Very best of luck.x

Petshopgirl - sorry for everything you've been through to get here.

I didn't have any downs syndrome tests at all with ds3 as I got pg with him after a m/c. It clarified for dh and me that I would defo not have a termination just because of a risk of downs, I wanted the baby too much. OTOH if scan at 20 weeks demonstrated a more significant health problem then we'd deal with that info when we got it.

Dh in particular didn't want blood tests to demo a theoretical risk and then spend rest of pg worrying about the risk. I was unwilling to have invasive tests to 'prove' the risk but also risk loosing the baby. Btw I was 39 when I got pg with ds3. He's five now, perfectly healthy and an absolute tinker (just drawn me a picture of us driving over some hills!)

I'm so sorry for your losses and so pleased for you to have got this far with your precious cargo!

I didn't have the screening for either of my pregnancies - I wouldn't abort a DS baby and I wouldn't want the stress of knowing my baby was going to be born disabled. People that I know that did have the testing just got totally freaked out by it and ended up with amnio even though the baby was about 1 in 200 chance.... Im 38 wks with DC2 and I am freaking out a little that something will be wrong with it at birth but these are normal fears and I will love my child whatever condition it is in.

I did have a little wobble at the 20wk scan and asked the sonographer if it all looked 'normal' so they can give you an indication then even if you don't have the nuchal fold test etc.

I think you have done absolutely the right thing, it is better to look at the long term and it sounds as though this child will make your world, whoever he or she becomes. I hope all the best for your family.

Blimey pet you have been through a rough time. Congratulations on your pregnancy!

I am 12 weeks pregnant with dc1. We have decided to decline downs testing purely because we would not terminate for downs so did not see the point in having. I am aware that there are some soft markers that can be seen on scan and can use those to be prepared. There are also some conditions that i would terminate for; but these can be seen on scan.

I think you have to make the decision that is right for you. It sounds like you have thought through all the options and come to a decision that is right for your family.

Enjoy the rest if your pregnancy! Hope it's relatively stress free for you.

petshop I am so sorry for the loss of your babies. What a terrible time you have had

I had two babies in my 40s and decided not to have any tests. In our case it would have just led to pressure for more intervention if the tests came back high risk.
I didnt want that pressure and worry.

I wish you all the best for your pregnancy and a lovely birth.

My fourth pregnancy was the only one that got past the 12 week mark. I was 40 by then, after all the grief and tears and tests etc etc. I refused the triple test too, because I simply could not have taken the miscarriage risk in having an amnio, and given my age, the odds would have come back high, and I'd have been advised to have an amnio anyway to be certain. And even if I'd known my baby had Downs, I could not have brought myself to terminate having lost three already.

We did have the nuchal fold measured. It was 1.8. But I have a friend who, when pregnant at the age of 44 with her DS, had a nuchal measurement of 2.8, and her DS was just fine.

Although I will admit that when my DD was born, the first thing I did when they put her on my chest, was to gently uncurl her hands and check to see if she had any creases (I'd read that a marker for Downs is no creases on the palms of hands....). There were plenty! I let out a huge sigh of relief. But even if she had had no creases, I'd have loved her just as much.

I don't know if that helps, but I hope it does a little bit.

Thanks so much everyone for your responses - it's made me feel so much better. Especially as it seems so many people have had very similar reasoning to us in their decision not to go ahead with the testing.

As other people have also said, I'm fairly certain that a diagnosis of Downs would change nothing for us so there really can't be much benefit in us knowing in advance, and it would only make us worry more. If we're lucky enough to get a baby in our arms at the end of all this then we will go ahead and deal with whatever we're faced with. Ultimately this may be our only chance, so it feels like the right thing to do leave it to fate now and hope that we might finally get a break.

If its any help I had a daughter last year at 37 and had no testing apart from the 12 and 20 week scans. I wish you all the luck in the world sweetheart xx

Dear Petshopgirl, you really have had such a horrendous and traumatic time with your earlier pregnancies. I can't imagine how tough those decisions were for you and your OH. No wonder you feel like you are not coping with these newer options that are offered to you now even though you've had the all clear for the genetic disorder.
A bit about my background, one miscarriage at 12 weeks then with 2nd pregnancy all seemed ok until reassurance scan at 17 weeks where we needed to go back in for a consultant to take a look at what scanographer wasn't sure about. Very sadly a week later at that scan it showed our baby had died. Post mortem showed that she'd had a disorder called turners syndrome this is a condition where babies do not survive to full term. During that pregnancy we chose not to take the screening tests. They prob would have shown up probs but it's hard to look back in hindsight with how we would have coped with that.
I'm currently now 32 weeks pregnant and we again chose not to take the downs screening or amnio even though we could have been a guarenteed that this baby wasn't a carrier of turners. Reasons being that i didn't want the anxiety of that process or the risk of the invasive procedure affecting the progression of this baby. I too was very nervous at our 20 week scan however thankfully there were no abnormalities or issues to be concerned about. I know this still isn't a 100% guarentee that there are no problems but our baby is growing well and i am in love with this bubba and know i will continue to do so no matter how they are when arrive with us. One thing i found helpful after the losses last year was going to talk to a therapist which helped me grieve and feel ready to move on. It's not everyone's cup of tea but maybe talking to someone might help to reduce your feelings of anxiety and hopefully help you to enjoy your very precious pregnancy.
If you'd like to stay in touch feel free to PM me, i'd like to know how you get on. X