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Awkward Post – Downs Syndrome Screening

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  • I agree it's a really difficult subject. I was very naive when I was pregnant. my nuchal fold scan came back with very low risks, followed by a perfect anomaly scan at 20 weeks and I wore my statistics like a badge of honour. So it was a big shock when my son was born with a critical heart defect and as a result suffered complications, associated respiratory problems and subsequent developmental issues. Even with a low risk result you may find yourself in a position no parent would hope for. All I would say is that scans don't show everything.

  • As Vontrap has said this is very interesting and nice to see it being discussed without turning into arguments and criticism over people's opinions.

    We chose to have the basic screening to know if we were high or low risk and said even if it was high risk we wouldn't have the further tests due to the risks of miscarriage and that we wouldn't want to terminate anyway. But in realistic terms to say that we wouldn't terminate is the easy thing to say. In regards to downs, then no we wouldn't terminate, but as others have said, it's the other conditions which are much more severe and affect quality of life.

    What makes me angry is that is always referred to as "the test for downs". Even the mw at my booking in appt called it that. When I said to her "it checks other things as we'll doesn't it?". She said yes but wasn't sure what and told me to read the booklet that came with my notes! And when I did read that it still didn't specify the other conditions that were tested. The only reason I knew was from seeing people talk about it on here.

    H was adamant that after the testing at 12weeks even if I was high risk we would still continue with the pregnancy regardless as he thought it was just for downs. I had to explain to him that it might show a condition that would mean the baby would never survive once born, or would be do severely affected that they would have no quality of life etc . I didn't push it any further with him as to what we would want to do in those circumstances as thought it was impossible to say what we would choose until you were presented with that and told all the specific details as every diagnosis will be different so its not black and white.

    It's good to discuss in advance and be aware that you could find out bad news, but until you actually get told that in real life I honestly think it's impossible to know what you would do.

  • Thank you for sharing that CP, it's certainly very valuable to have an insight from someone's who's been there.

    Thing is though, we did briefly say "what if the scan shows the baby has Downs?" (not knowing at the time what other things they scan for) and we both said we couldn't know for sure until it happened what we would want to do, so I don't know how discussing it further would have helped in our case. It would have just added to the other pregnancy fears and worries and if the scan had showed abnormalities we'd have been no further along really? See Mrs V says "Until you are in the situation yourself you don't know what your decision will be" - so why go over and over in advance then? If we'd discussed it more we'd have said the same, that we couldn't possibly have decided in advance how we would feel about it.

    I agree though that if you do feel strongly one way or the other about something then maybe discussing in advance could help. We were of course aware that they might say at the scan that the baby had abnormalities but felt we couldn't make decisions or worry about specifics of what to do in advance.

    Hope that makes sense!

  • Deleted, iv gone off on a tangent sorry 

  • CP I totally understand what you are saying, but to me the OP is saying something quite different. They have talked and she knows how her H feels, she's unsure how she feels herself. For them specifically I don't think there's much point them discussing it further while they don't need to (and hopefully never do).

    My reasons for saying we would never terminate whatever we were told are partly from my religious upbringing, and partly from my H watching his mum carry his brother knowing his chance of survival was around 2% (he was stillborn at 34 weeks), so we're not naively thinking everything would be ok, we just both feel very strongly on it. That's not to say I would ever judge anyone for their own choice and decisions.

  • We didn't have any further testing over and above the normal ultrasound scan. We talked about it and for us we both agreed that we wouldn't terminate whatever was shown as a result of those tests so the tests were redundant. It just wasn't something we wants to do.

    However, I don't think there's any right or wrong here. It's a very personal choice and perhaps if the scan had shown any sort of abnormality we may have felt differently and changed our minds.

  • we discussed before the 12 week scan our views on this and luckily we felt the same. we were low risk both times so it didnt matter, but we did both agree. had we not, im not sure what would have happened.

  • The screening is offered routinely in our trust, so we opted to have it both times. We were low risk for both. We did discuss what we would do if the results were high, and I think the consensus was if potentially Downs we would go ahead, but by knowing we would have time to prepare and research support networks etc. before the manic newborn days when everything would be overwhelming anyway. In the case of other syndromes, it would have depended on the severity etc. My mother is very anti termination and wouldn't have agreed with a decision to terminate whatever the outcome and would have put a lot of pressure on us to continue with any pregnancy. Personally I didn't think it right to give birth to a child who could only live for a very short period and suffer during that time. However, from a 'selfish' (if that's the right way to put it - probably not) we could possibly have had some time with that child and cherish every moment, even if just for a short period. There are so many personal factors to consider and 2nd time around my priorities were different to the 1st time as we already had a child that we had to consider. I honestly don't know what my decision would have been without having been presented with the full facts, life expectancy, complications etc. but I would have wanted to know what to potentially expect.

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