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Pregnancy

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

Screening shows high risk for Down's.

57 replies

OctopusBreath · 15/08/2022 12:50

And I have no idea what to do.
Unexpected pregnancy, I have two teenagers and will be 40 when the child is born. Am nearly 15 weeks now and I really don't know whether to take the risk of having an amnio, and if I do and it comes back that the child does have Down's, what difference that will make.
Does anyone have any experience of this please? They said 1 in 78 chance...

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Lineala · 15/08/2022 14:24

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Marilla1966 · 15/08/2022 14:27

That was about the same odds that I was given at 40years old. Ended up booking a NIPT at Fetal Medicine Centre on Harley Street and all was fine. This was 9 years ago but I think there are more local / regional places to have it done now. Good luck xxx

Lineala · 15/08/2022 14:27

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Whilst I don't agree with this view, it's a perfectly valid point and @mosex has a right to her view.

hotdiggetydog · 15/08/2022 14:28

How does 1 in 78 translate to high risk?

Twizbe · 15/08/2022 14:43

She has a right to a view, but you can't say 'no judgement' after a judgement.

OctopusBreath · 15/08/2022 14:44

Thanks for sharing that TheresSomethingNasty - it must have been a shock. I bet she's lovely! I wonder how much of this risk statistic is because of my age (not that there's anything wrong with that, because age does increase risk...)

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OctopusBreath · 15/08/2022 14:45

I think anything more than 1 in 150 counts as high risk hotdiggetydog

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MintJulia · 15/08/2022 14:54

Mine was 1:28. I was 44 and I chose to have an amino which showed baby was fine. Ds is now a strapping 14yo.

Find out who would do the amnio, talk to them if you can. What is their experience?

hotdiggetydog · 15/08/2022 16:31

OctopusBreath · 15/08/2022 14:45

I think anything more than 1 in 150 counts as high risk hotdiggetydog

How though? One in one hundred and fifty is a 0.75 per cent chance! You'd bet against it not for it!?

maryso · 15/08/2022 16:47

You'll never know unless you DNA test. My risk was off the scale, i.e. palpably worse than the 1 in 4 chance screening limit, and the amniocentesis came out completely negative. I agreed with my consultant not to bother screening with all the later ones and went for amnio for every one despite the miscarriage risks of amnio in itself.

I think that screening may be reassuring if you have unusually low risk results, however even with off the scale results, only a DNA sample (which will be used to scan a variety of other potential chromosomal defects) is useful. Needless to say with my first, having to wait for the results while working including conferences abroad was challenging, but colleagues were very understanding and supportive.

bruffin · 15/08/2022 17:14

hotdiggetydog · 15/08/2022 14:28

How does 1 in 78 translate to high risk?

I think its comparative to your normal risk for your age. I was told that 1 in 60 was equivalent to a 37 year old (25 years ago so may be different now or ive remebered wrong). I think the risk for a 34 year old is about 1 in 310 so this over 5 times the normal risk

ChagSameachDoreen · 15/08/2022 17:18

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But it is very much a judgment if you think it's "horrible". You have no idea of anyone else's situation in terms of access to support and resources. Best just not to opine.

Lineala · 15/08/2022 19:54

ChagSameachDoreen · 15/08/2022 17:18

But it is very much a judgment if you think it's "horrible". You have no idea of anyone else's situation in terms of access to support and resources. Best just not to opine.

But it's a personal judgement relating only to @ChagSameachDoreen . And she is not imposing her view on Op.

There's lots of reasons a termination isn't an option for people. Religious grounds, disability discrimination, treating the downs person as lesser in some way, and even shame. And some of it is conditioned by our upbringing and situation.

That doesn't mean people aren't entitled to an opinion that they believe termination is wrong. It isn't my opinion, but I will support people's right to hold those sentiments and to be able to have free speech is something to be cherished. Let's not shut people down on here, please.

mosex · 15/08/2022 21:07

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mosex · 15/08/2022 21:08

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DangerouslyBored · 15/08/2022 21:16

jumperoozles · 15/08/2022 13:54

Well then don’t post your opinion at all. Really how do you think that post might make some people feel? You could just say I wouldn’t do it but saying it’s a horrible thing to do IS a judgement whether you say it is or not.

Exactly, @jumperoozles such an unhelpful, judgy post from @mosex 🙄

DangerouslyBored · 15/08/2022 21:17

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🙄 🙄 🙄

Twizbe · 15/08/2022 21:21

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We do test for lots of other things. The 20 week scan isn't to find out the sex of the baby, it's too have a detailed look to see if there are any issues with the baby physically.

The downs test also tests for other chromosomal issues as well.

Lmf685 · 15/08/2022 21:33

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This is just as judgemental as your first post! You need to stop. You are offending a lot of peoples personal choices and making a comment like this is not on. So basically no one should have a child unless they are prepared to have a child with any type of physical or mental health issue.

This site is to support and inform others not to judge them before they even have a chance to speak .

OctopusBreath · 15/08/2022 21:58

Thanks to all who have posted their experiences. It's really made me feel a lot better.
Of course, mosex can have whatever opinion he or she wants and has the right to voice that opinion. I would question that this thread is the right place to do that though- a little sensitivity is always appreciated.

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whiteroseredrose · 15/08/2022 22:23

Remember that a 1 in 79 chance of Downs means that there is a 78 in 79 chance of not having Downs.

DD is 19 now. I had similar odds so had the amniocentesis (would have aborted) which came back negative.

ANewNameANewDay · 15/08/2022 23:00

@mosex just because you've got an opinion doesn't mean you need to share it here. People screen for specific conditions because they are significantly life changing and can sadly be detrimental in many ways. There is absolutely nothing wrong with TFMR and your post is insensitive to women who may have gone through that painful experience.

That aside, OP I'd push for a NIPT test just so you know for sure and can have time to prepare. Best of luck to you. Flowers

maryso · 16/08/2022 02:09

I remember the midwife who saw me next saying that 1 in 4 means it's 3 in 4 chance they're fine! Firstly if she'd understood the marker numbers it was a lot worse (1 in 4 being the limit of marker thresholds). Also while probably coming from a well-meaning place, how could that possibly be of any use to anyone? It's as if it had been 1 in 2 risk, she would have trotted out, well you've got a 50% chance everything will be fine!

I reckon since the DNA was set on conception, why refuse valuable information on the full array of tests for chromosomal defects, so as to prepare in the best interests of the baby and mother? I have no trouble with others who choose otherwise, akin to not wishing to know the sex of the baby despite every HCP you see knowing and it was determined at conception anyway.

CherryBlossomAutumn · 16/08/2022 02:38

This is a very hard place to be, as you are considering whether your child has DS but these initial tests are only estimates of risk. The other risk is that you may make a decision based on something that is not true.
So as others have said, getting some more accuracy if you can will help.

I’m not sure it’s helpful to think too much about ‘what you will do’ just yet, just focus on getting the information, understand it’s limitations, don’t worry too much and look after yourself. Allow time to process.

CherryBlossomAutumn · 16/08/2022 02:42

I use the word risk to get across that it’s important to understand the test is about mathematical probabilities - meaning no offence or inference about disability.