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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Screening for Down's Syndrome

51 replies

DianeDavies · 19/06/2013 16:29

What are people's feelings about having the test for Downs' Syndrome? (there is no right or wrong answer to this, I'm just in a dilema)

When we were expecting our first baby we didnt have this or any test because we figured theres nothing we can do about it (we wouldnt terminate) and if our baby has the condition then so be it. But this time I feel a bit different. There is still nothing I can do about it if the test is positive but I am anxious about my baby having Downs.

I cant decide how I feel about it - it'd be pointless knowing but..

OP posts:
MsLadyLove · 19/06/2013 16:30

Its just a bloodtest. We did it. Up to you

ByTheWishingWell · 19/06/2013 17:12

We had the initial bloodtest, just for the peace of mind of it coming back clear. When we decided to have it, we agreed that if it came back positive, we wouldn't have further tests, as we wouldn't terminate either way, so would not take the risk of the diagnostic tests.

It was relief when the results came back; I suppose if it had not been clear it would have given us time to prepare ourselves. I don't think it is pointless knowing- you either get reassurance or time to prepare yourself, so if you want to have the test, go for it.

TarkaTheOtter · 19/06/2013 18:00

I'm on the fence. I had it with dd and my risk was low risk (so i wasnt offered any further diagnostic tests) but VERY close to the borderline. No reassurance at all. DH wanted it done with this pregnancy so I will have the screening but if he wasn't so keen I wouldn't.

farmersdaughter · 19/06/2013 18:10

As already said, it's only a bloody test and if something does come back then you know, and have plenty if time to prepare yourself (if you need too)

LittlePeaPod · 19/06/2013 18:16

We are doing it and also doing tests for Edwards and Patua.. I would rather know....

MadameJosephine · 19/06/2013 18:31

My feeling was that if I wasn't going to do anything with the result then there was no point having the test so i declined screening. If it had come back high risk I wouldn't risk miscarrying a healthy baby by having an amino to find out something that I would find out anyway on the day she was born

firesidechat · 19/06/2013 19:25

I didn't have the blood test for Downs, but it was obviously a personal choice.

Much the same as you OP I wasn't going to terminate if the test was positive and didn't want to deal with any added pressure from other people at a vulnerable time. We have friends who have children with Downs Syndrome and just thought that we would just deal with it if it happened. Looking back (it was over 25 years ago) I think I was a bit young and naïve, but not sure if I would do it any differently now. Probably not.

JanieLovesLuckySocks · 19/06/2013 19:29

OP i totally understand how you are feeling. I'm in NI and I wasn't offered the NT test or the blood tests. I asked the consultant at a scan at 14 weeks and they advised that it is only offered here to pg mothers over the age of 35 but I could have the blood test if I requested them. I originally would have agreed with what a couple of posters have said - it's only a blood test so just have it. but after some thought and a previous loss of pg we decided not to have the tests.

after having a miscarriage in october, i am already in constant panic with this pg (currently 17 weeks) and I'm scared to get excited in case something was to go wrong. in my opinion, no matter what the results of the blood test, i would personally panic for the remainder of the pregnancy (we wouldn't terminate either) - and perhaps for no reason. i know the risk of amnio is under 1% but sadly a friend lost her baby after having the amnio and turned out her baby would have been a perfect little boy with no abnormalities.

it's a very divided topic and i totally appreciate everyones opinion. sadly there's no perfect answer, we're just going with our hearts after a previous sad experience. also, even if results come back as high risk, things can be totally fine.

intheshed · 19/06/2013 19:37

With my first pregnancy I was all set to do it, mainly because I hadn't thought it through, it was jist another routine test in my mind.

Then the midwife asked me whether I would ever terminate for Downs and I said 100% no. So she made the very good point that in that case there is no point having the test, as even if it comes back high risk, the odds are still vastly in favour of the baby not having Downs, but you will have spent the pregnancy worrying about it for nothing.

It made sense for me, in the end I didn't have the test for either pregnancy, or the nuchal test.

BlackholesAndRevelations · 19/06/2013 19:57

I am awaiting results of my test and pretty scared to be honest. Have two healthy children but had two miscarriages when ttc this one, so would have to think very very carefully about putting this precious one at risk. However..... Now I have children already, they have to cone first, and I'm wondering how having a sibling with downs would impact on their lives. Tough tough tough.

Original poster
DianeDavies · 19/06/2013 20:31

THANK YOU for all your replies. I'm still a little unsure but I'm tending towards NOT having it as, like Blackholes.. said, we've been ttc for a few years so might not be worth taking any risks and as mentioned we cant change it, so its pointless.

But.... I work in a respite unit and we have a lot of Downs customers so my experience is making me worry. And I already have a son who would be affected And I'll be 40 when he/she's born, he/she would be dependent on us for much longer than most children and we might not always be here/be fit to care for her well into adulthood...??

Blackholes..: good luck with the decision making x

OP posts:
Original poster
DianeDavies · 19/06/2013 20:32

Sorry Blackholes I've just reread your post. I really hope you get a clear result xx

OP posts:
Excited85 · 19/06/2013 20:52

I found the whole thing a bit weird to be honest. In early pregnancy an before I hadn't given Downs (or anything else for that matter) a second thought and was all positive everything would be fine. But then I got all this information about Downs through the post and midwife asking if I wanted tests etc. If it hadn't been mentioned I wouldn't have asked for it, but because it was made out to be such a big deal I found I started worrying about it. So we decided to have the test to avoid more months of worry. I don't like how they effectively implant worry, particularly when there are so many things that could be identified as potential issues. Perhaps it's just me though but I'd have preferred to have remained naive to possible issues until the birth, after all that's what previous generations did.

Fakebook · 19/06/2013 20:57

I've never had it done for all three viable pregnancies. It's not even something I've ever researched or read into.

MrsGSR · 19/06/2013 21:02

I'm going to have the initial test but wouldn't risk the amino. We won't terminate either way but if it's low risk it'll put my mind at rest and if it's high risk I'll be able to do research and prepare myself.

Shellywelly1973 · 19/06/2013 21:14

Im expecting my 6th baby. There were very limited tests when i had my first two dc. With my 3,4&5th dc i only had the nuchael screening at my 12 wk scans nothing else. If asked, i would have refused any further tests as abortion would have been abhorrent to me...

My 4thdc has complex SN. I couldn't cope with another dc with SN. It wouldn't be fair on the family as a whole. The reality of raising dc with SN in all honesty is hideously difficult & exhausting.

You really can't judge until you've experienced parenting & caring for a SN child.

When i booked in with this current pregnancy the mw asked me about tests & our views on the pregnancy should there b abnormalities. I said we wouldn't continue with the pregnancy. She advised we have the CVS.

I've gone from being extremely prolife to very prochoice. I will be 40 before this baby is due so its a possibility that i won't end up with a baby. I had a MMC just over 3 months ago so i also know the heartbreak of a miscarriage.

Its deeply personal. Theres no rights/wrongs. It really is a matter of each to their own.

We've decided whatever the outcome of this pregnancy, we won't be trying again.

LoveBeingUpAt4InTheMorning · 19/06/2013 21:29

I had all the tests in a very flipent way as I never considered if the results were not what I was expecting. With dc2 I had a very high downs result and did have an amino. I really didn't know what I would do but felt I couldn't not find out. My consultant had amazing stats and I didn't have long to decide because I was further along than I'd thought.

For me, it comes down to whether you feel you need that time to prepare (seeing as you are certain about continuing the pregnancy)

LoveBeingUpAt4InTheMorning · 19/06/2013 21:31

Btw it's only an indication, I spoke with people here who had ridiculously high risk and everything was fine and those who had very low risk that turned out to have whatever they had been tested for.

HystericalParoxysm · 19/06/2013 21:33

I have a child with severe congenital abnormalities. I still had the blood tests for my subsequent children, even though I would not have gone ahead with an amnio. I decided I would rather be prepared.

chillisbopper · 19/06/2013 23:00

I felt the exact same as you did with your first (this is my first Smile). I signed a form opting out of the tests as I know that no matter what this is my baby and I will love and care for him/her either way. I'm a bit of a worrier as well and I thought if I knew there could be a chance I would just worry (possibly even unnecessarily!) for the baby and it's future and worrying for the next 23 weeks wouldn't do me or baby any good. But if you feel you will worry if you don't know then it might be a good idea that you take it, as you really want to just do whatever makes you feel comfortable. Your comfort and wellbeing are paramount to baby's right now, that's how I made my decision anyway Smile. Good luck with everything Thanks x

sleepyhead · 19/06/2013 23:17

I was 40 when pregnant with ds2. This meant that even with no tests my background risk was approx 1:100 which automatically made me so-called "high risk".

I chose to have the screening tests to refine this. Obviously I was hoping to get a better result which would put my mind at rest. Dh and I had discussed the fact that there was a good chance however that screening would show us to be at even higher risk that the age related measure and had agreed that if it was higher than 1:50 I would opt for amnio.

My risk came out at 1:27 and I had an amnio at 17 weeks. I felt guilt for putting my baby at risk (I wouldn't have terminated for Downs) but I wanted to know.

I spent a lot of time researching Down Syndrome on the Internet while waiting for the result. The amnio was clear. Oddly, along with the relief that my baby was healthy I still felt guilt for the baby with Down Syndrome that never was - guilt that I was celebrating not having that baby. I can't really explain it. I donated to Down Syndrome Scotland the day I found out, for the families who were going down the path I wasn't taking and for the help they would have given me if it had turned out to be our path.

I don't regret the screening or diagnostic testing. Obviously if I'd miscarried then it would have been horrendous and I'd have found it very difficult to forgive myself, but for me the 1:100 risk at the outset made it very hard for me to wait 28 weeks to know one way or the other.

It's a very personal decision and not one that should be made without thinking through the consequences. I found the midwifery staff excellent at helping us make the choice whether to have screening and diagnostic testing or not. At no point was it assumed that we would.

evelynj · 19/06/2013 23:37

Sleepyhead, that is really lovely-I'm welling up reading your story. I'm due in 3.5 weeks & had the tests first time round, all fine, but no test this time as they don't do it in NI as standard. I'm similarly concerned that this baby will have something wrong but guilty that I'll be so glad if it doesn't.

I think the choice depends on your personality. Even at that, pg hormones exaggerate everything & can make you feel different & less logical than usual

FattyMcChubster · 20/06/2013 00:12

I personally think that if you are 100% carrying on with the pregnancy no matter what, you don't necessarily need to have the tests. They would be more for if you wanted to be prepared.
Would the test outcome ever waiver your original thoughts though? Obviously you wouldn't know unless it happened but that should be considered.

Futterby · 20/06/2013 02:19

I declined the test because I know that if the results had come back high risk, I would have driven myself crazy Googling the accompanying heart problems, kidney problems etc and I was 100% that I would carry on my pregnancy either way so I would rather not have to worry about it for as long as I can.

What I'm trying to say is that the accompanying health risks would matter more to me than the baby having Down's, and I wouldn't want to worry about them if I don't/until I have to. IYSWIM.

MarianaTrench · 20/06/2013 06:18

The tests are not just for Down Syndrome but Edwards and Patau too, both of which are fatal condoti The choice here is whether you carry to term and the baby die shortly after birth or whether you terminate in pregnancy.

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