Awkward Post – Downs Syndrome Screening

Me and H are coming up to our scan, its on the 26th when I’ll be 13 weeks and it raised the question about Downs Screening and what we would do with the result.

Those of you that came out High risk, or know people who came out high risk, what did you/they do?
H is very much a “we need to think about the quality of life for all 3 of us and how we would all be impacted” but ultimately I think he’s leaning towards aborting.

I just don’t really know how I feel about it all
This is a horrible post I know, and I know it’s potentially a controversial topic, I just wanted to hear of other peoples experiences and outcomes. The only two pregnant people I’ve known were both low risk

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  • It is an awful thing to think about, but it's sensible to have an idea beforehand of what you're going to do rather than be put in that horrible situation and then have the emotions adding to it all.

    Also, it's not just DS that you need to consider, but other conditions that are also tested for at the same time (Edwards' and Patau's syndromes) which can sometimes be incompatible with life.  

    We made the decision that if the risk was higher that a certain level then I'd go for further testing (CVS or amnio) - but below that we'd continue.  Fortunately I had a ver very low risk from the combined Nuchal scan and blood tests.  I know my H would wanted me not to continue if our baby ended up being DS but I'm not sure if I'd have actually been able to do that when it came to it.

    I do have a friend whose risk was about 1/100, and she really didn't know what to do for the best with the risk of mc being similar if she was to have the amnio - she did decide not to have further testing although worried throughout the rest of her pregnancy, but her baby was ok in the end.  She had a similar thing with her second baby girl as well.

    Not sure my post is any help to you, hopefully it's not a decision you'll have to make. x

  • We had the screening and we came back high risk. Our numbers were 1 in 5 so very high and a good chance that the baby would have a condition.

    We then opted to have the amnio as we felt we needed all the info that we could.

    Prior to having any screening we both agreed we'd keep the baby, whatever the news was. When we were given the odds I won't say we changed our mind as we didn't, but it made it real. Rather than just a hypothetical conversation we suddenly we're faced with the reality that our baby may have downs or similar/worse. This made us draw into question how we'd cope, mentally, financially, physically, there were a lot if questions.

    I think it's really hard to say how you'll feel 100% until you're faced with the reality of it.

    Sensitive bit......

    As it turns out we went for the amnio and our baby had already passed away, so we had no difficult choices/questions to ask.

  • Also to add, recently we found out that our baby did have Down's syndrome.

  • Me and H had a really hard think about this and spoke a lot, I am the kind of person who needs time to get my head around things, I don't like surprise, étc so for me, the obvious answer was to have the screening. However H was of the opinion that it didn't matter, we wouldn't consider a medical termination, so why take the test? We spoke to our MW at length who raised all sorts of interesting questions.. Would we take further tests? While the first doesn't carry a risk of miscarriage, the second would? Iwe determined for that reason, h was very against any further tests.. So she questioned what was the point of having the first, to worry us? To spend the whole of the pregnancy worrying?

    In the end, we agreed to do the first, and see what the results were, and we came back as low risk, if we had been given a high risk, I'm not quite sure what would have happened next, all I know is my H was completely against further testing if it risked the baby's life, while I  felt a need to know.. I'm not sure where we'd have gone with that tbhx

  • I think that's it LM, we both thought we knew how we'd react. But given the news we both had doubts. It's really hard to say how you'll react unless you're faced with it. Our mw said lots of people think they know what they'll  do, but lots change their mind.

    WW- could you do what LM did? Have the screening and hopefully you'll be low risk and that's then it out of your head?

  • We knew that we wanted the screening, however we were coming from different angles.  We knew if we were high risk we would have an amniocentisis to know for certain.  MrJB was adamant that if we knew that baby had Downs then he wanted to terminate; for me I wanted to know for certain so i could be prepared and get a support network in place but would continue with the pregnancy.  We knew that coming to this point neither one of us was going to change our minds and it would likely end out marriage as we both felt so strongly about it.  

    These thoughts were purely related to  Downs Sydrome.  The tests also look for many other syndromes which do not have the same quality of life and in those situations we again would have had an amnio but I would have terminated.

  • WW, I'm someone who usually needs to talk around every potential outcome. Hence before I came off the pill we'd had extensive talks about fertility, treatment, adoption etc, but with Down Syndrome I said I couldn't begin to predict how I'd feel. Plus there would be a sliding scale of likelihood and I couldn't factor that in at all. My tiny head just couldn't begin to work it through.... Husband was happy to just wait and see what came of the test.

    I don't know anyone who came back high risk and the only family I know personally that Down Syndrome affected decided not to have the test anyway, but this was a good few years ago.

  • WW, I was tempted to start a similar thread, as H and I have touched on the subject, but not really discussed it at length.  I think we're just clinging to the fact that hopefully with my age our risk will come out low (I'm 29).

    I think if we came back with a risk of 1 in 100 or higher (even though 1 in 150 is considered high), we would opt to have the harmony test done at the fetal medicine centre rather than go for the more invasive screening tests.  I would consider the cost well worth it for either peace of mind or to just know exactly what we're faced with.  My sister had it done asap at 10 weeks because her age would almost automatically put her into high risk and she didn't want to faff about with invasive testing.  I've never asked her whether she would terminate, though.  

  • WW I'm a little confused, you haven't had any scan or test yet right? So you might be low risk or high risk for DS, you don't know?

    Our approach, not saying it's right for everyone, was not to worry about things until the time came. So we had our nuchal screening along with the 12-week scan (i.e. combined scan and bloods) and it came out very low risk. We felt there was no point, for us, worrying about being high-risk until it happened. My age and family history suggested I would have a low-risk pregnancy in general so that was what worked for us, we had no reason to worry and didn't want to stress about things that might never happen. Of course if it had been different and we had family history or I was older we may have taken a different approach.

  • H and I both agreed from day 1 that whatever happened we would never terminate the pregnancy. We had the nuchal screening and fortunately came back very low risk. We hadn't discussed whether having the amnio would have been the right decision for us, but my personal feelings on it are that I probably would have had the amnio had we been high risk, so I could prepare myself for whatever we could have been faced with.

    If you both agree to have the screening but aren't on the same page over potential results I'm inclined to agree with Saisi. There's no point getting into it unless you really need to. There's a very good chance everything will be fine and you won't have to think about it anyway.

  • i was 28 btw so also quite young.  so i think people often get caught up in the thinking it will happen to older people but its not always the case, and we also have no family history either

  • Thanks for the replies ladies. Not had any tests yet, will have it on the 26th. Everything may well be fine but I am one of these people that likes to plan out every circumstance and didn't know what to make of this one. I agree with cherry pie and deedee, it's good to have your eyes open with this sort of thing and be aware, that being said, I still don't know where my heart lies on this one. Further testing does scare me due to its risks but I don't know if the unknown is scarier  and also if the extra worry would do damage in itself to me and the baby for the remaining 6 months. I'm very grateful for all your responses though, I have no one in the real world to talk to about babies

  • CP I totally agree with your post, you have explained it very well. Until you are in the situation yourself you don't know what your decision will be.

    We agonised over our decision to terminate but couldn't bear the thought of our baby being put through so many invasive major surgeries and still would have a poor quality of life.

    WW I hope you don't have to worry about any of this.

  • We discussed it to some extent before the screening -for us it was finding the balance between feeling prepared and having an understanding of the other's feelings on it, and initial thoughts on what we would do, but not dwelling on it and discussing it to the extent that we would have a decision 100% before we were put in that situation IYSWIM. I hope it's not something that is an issue for you either way WW.

  • We had the initial nuchal screening and said if we were high risk we would have further tests and go from there. The results came back low risk and we were told our baby was fine at the 20 week scan, yet our baby was born with Patau syndrome one of the things that markers for might be apparent in the tests. It's worth discussing how you might deal with the situation if there's still complications even if the results are low risk.

  • I don't know anyone IRL that was high risk.

    We declined all tests/screening, after numerous conversations about it.

    TBH, we were only told about downs, not other things it can pick up, so we based our decision, on not being bothered if our child had downs. We wouldn't terminate, and would deal with it, if it happened, so no point with the screening.

  • We wanted to know what the situation was so we could consider all options then make a decision based on facts. We were lucky that low risks came out.

  • This is a very interesting thread, glad you started it even though it could potentially be very controversial!

    I agree with Cherry Pie.  We have our 12 week scan next week and have opted for the screening and we have discussed that should things appear higher risk then we will go for more tests because we both agree we wouldn't continue with the pregnancy should the baby have DS or other severely disablign conditions.  That said, I suspect the reality of being faced with a positive result will be a different matter entirely.  

    I hope everything is low risk for you

  • Same as AK, we haven't had the screening. Sonographer did comment that all looked fine though.

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