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Original poster

Hospital tested for Downs even though I said no...

130 replies

Lyndsey8880 · 11/03/2026 19:20

Hi all,
Its been a day!!! Saw on my app yesterday I have low Papp-a so been expecting a call about my combined test results.
I had requested edwards and patau, same as I did with my daughter 5 years ago...
The screening midwife called and said I have some good news, and a confession..
The good news is your screening for edwards and patau came back as low risk. The confession is that you were tested for Downs. Im so sorry, I know you didn't request this. The paperwork was filled correctly but the lab went on autopilot and tested all 3. So now, do you want to know the Downs result and the next steps, or would you rather not know as requested..
Clearly she'd already given me the answer by talking about next steps..
Turns out my test came back as 1 in 25 for Downs.
I didn't want to know, and now im in the situation where I choose to have NIPT test to be more sure, or just try and ignore the fact that they've given me these results.
Been a stressful day!!

OP posts:
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TheHillIsMine · 12/03/2026 22:59

pregnantDecadesAgo · 12/03/2026 08:42

To state the obvious, if a test is perfect, 2 out of every 100 women told they have a 98% chance of being fine will not be fine, as will 4 out of every 100 women told they have a 96% chance. I think there's a name for the cognitive bias we all have that makes us tend to feel, emotionally, as though a very high chance is the same as certainty, but I've forgotten what it is.

As my nn indicates it was a very long time ago but something very similar happened to me. I've forgotten some of the details and the tests available then were different anyway, but I was given the same 1 in 25 chance of Down Syndrome based on a test I'd specifically said I didn't want. [ETA but without the "next steps" complication - I was given the result, and then I had to point out I'd said I didn't want it.] In my case I hadn't wanted it because earlier in pregnancy I had had, privately, a more reliable test which had given me a low chance, so I didn't want to be confused by data from a less reliable test which I didn't feel I should weight anyway. (I think the earlier one had made use of ultrasound measurements, done when I'd had an ultrasound privately because I'd had spotting and was about to travel - but I forget.)

In my case the next step would have been amniocentesis, and the fact that that carried a risk to the baby, plus that I had reason to think the 1 in 25 was less reliable than the number I already had, led to me deciding not to have it. As it turned out my baby was fine. I understand the difficulty though. It's very individual because it's fact sensitive - it relates both to all the other information you have and how this 1 in 25 contributes to it, and to what you'd do in various situations where you had more data. All the people saying "you obviously don't mind if the baby has Down Syndrome so what's the problem" - pah. Personally I would have aborted for certain DS, but I also knew there was a chance my baby would have DS or some other serious problem and I wouldn't know until abortion wasn't an option. Having a child involves letting your heart go walking around outside your body, as they say, whatever choices we make, but that makes those choices carry more weight not less.

I think if the midwife telling me had really understood why I had not consented to the test, it would have been better if she simply hadn't told me that the test had been accidentally done - but I can see why that wasn't an option for her. They need to have rules about what to do in such cases and it's not hard to construct stories in which not telling would be a terrible thing to do.

Sympathy.

Edited
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My point was someone said the baby will be "fine" as it's 1 in 25.

LameBorzoi · 13/03/2026 02:32

WombatChocolate · 12/03/2026 18:31

Yes, I guess the fact the testing was done without consent will be scrutinised. But what about the way the MW presented the info to Op in a non-neutral way, but basically told her the result?
That won’t be known automatically will it. In my view it’s at the heart of the issue here.

Mistakes happen with testing and consent. It’s so vital that it’s then handled appropriately but here the mistake has been made so much more impactful for Op than it needed to be. That’s the dreadful thing.

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I think it's a bit of a no win situation for the MW.

If the midwife is too off hand about it, it sends the false message that the screening has come back as low probability. Most people would asdume that that was what the result was, if no other hint were given. This would be indirectly giving OP false information, which isn't ok.

Lying and saying that she doesn't know the result wouldn't be great either.

WhatNoRaisins · 13/03/2026 09:35

Shit happens in admin and I think the MWs involved in this probably need some sort of agreed policy on how to talk to the patient in a situation like this where their consent has been breached and there is information that they did not wish to receive. This wasn't handled well but I get that it was an awkward situation for the MW.

Betterthantherichesofthisworld · 13/03/2026 13:25

Hi OP. I'm really sorry you are experiencing this.

Just to echo a pp, please do consider contacting ARC. They are non biased and have a wealth of knowledge.

Best wishes.

Blondeshavemorefun · 13/03/2026 14:08

dammit88 · 12/03/2026 06:58

I agree and accept that Amnio does pose a risk to the baby (and im sorry for your friend) but it is still really really important for people to understand that NIPT in NOT an amnio. It stands for NON invasive prenatal testing. Amnio IS invasive. NIPT itself does NOT pose a risk - it is just a blood test. The result of that NIPT might mean further tests are offered that do indeed risk the pregnancy. But people need to be very clear of the difference (and I think most people are but some of the comments muddy it).

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This

I said this in my first reply on post there is no risk with. NIPT

they are 2 totally different ways of testing and yes an amino does share a risk of miscarriage where a NIPT is no risk to baby or mum

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