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

[Lyndsey8880]

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!!

I agree. I was asked quite aggressively and patronisingly why I'd not had any extra tests done. I said I would be having the baby no matter what. Then there became the time when it looked likely that the baby would have a very serious condition. I still opted not to have an amino and took what I still hate feeling was the cowards way out. I decided to let nature take its course, was told baby wouldn't be in any pain, as one minute with them was better than nothing. Baby was born very overdue but totally fine.

A friend had tests. 98% chance baby had no chromosomal differences.

baby born with Down syndrome.

Isn't it obvious why OP didn't say no? By asking if she wanted to know about next steps, the nurse made it obvious that there was cause for concern. In those circumstances, it's obvious that it's better to know just how concerned you need to be.

According to the Global Down Syndrome Foundation, the term "Down's syndrome" is the correct one to use in the UK. The US only changed to."Down syndrome" because they wanted to clarify that it wasn't a syndrome that Dr Down himself had, not because they thought it was improper or offensive.

There is absolutely nothing offensive about the term Downs Syndrome. Down Syndrome is the American term. My DD with DS was born in 1990 when there were still a few older people around who used the M word to refer to her . Pointless getting upset - they didn’t mean any harm by it. On the other hand I do find people today using ‘mong’ to mean stupid really offensive. Pick your battles.

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.

I think this is a really unpleasant response TBH, crossing a line.

What you would have done doesn't have to be the same as what the OP would have done. I don't see how it makes her 'neglectful'. Are you really saying that a parent who isn't perfectly knowledgeable about their child's health should be beating themselves up? Where does that line of thought end - should we all re-qualify as specialist doctors to support our children?

The OP has not said she is refusing the anomaly scan later in pregnancy, which should identify major heart defects.

It sounds as though you will carry on with the pregnancy as you didn’t want to know. I wouldn’t want to know either so therefore no further testing is needed?

Please remember this is a pregnant women if you look back to many of your pregnancy’s small things feel huge I cried because I had chips without ketchup once and I really wanted ketchup. I also was homeless and fleeing domestic violence just before anyone says anything about privilege but you can’t see normal emotions when your pregnant so to everyone saying “ it’s no big deal if you didn’t care anyway” it really is right now to this women.

to the OP I am sorry you went through this and I’m sure it was a shock obviously I can’t tell you the outcome or ever been in that situation but it might not be all what it seems I think you need to work out on how you’d feel in different outcomes and work backwards. I’m sure all will be fine whatever the ending d

There are some really awful replies on this thread. Poor OP.

OP this is your decision and there are no wrong answers. We didn't have the testing and I think it would make sense to proceed with not doing any more testing. You actively chose, up to yesterday, not to know. The current situation is you still don't know. Your baby is exactly who they are either way, they are not a statistic and if they have Down syndrome then you will deal with it just like everyone else who doesn't get the diagnosis until after birth. Parents have been handling this for generations and you can too.

OTOH if the 1 in 25 is going to keep you up at night then it's also OK to change your mind given the new info.

Maybe go with whatever decision is least likely to keep you up all night worrying for the rest of the pregnancy. Anyone who says "why wouldn't you want to know?" is not th right person to advise you, they have not trod in your shoes and made the same decision as you did re testing in the first place.

So now, do you want to know the Downs result and the next steps?

Surely the complaint here should be about the MW, who despite knowing the OP didn't want the testing for DS told her she was high risk when she mentioned next steps.

Low risk doesn't have any next steps.

The MW should have just informed the OP that the DS testing was done in error and asked her if she wanted to result or not?

I hope my lazy abbreviation for Down Syndrome isnt offensive. I was going for brevity.

People don't all feel the same as you and they are entitled to their own feelings.

The risk calculated during the scan uses a formula based on age, nuchal translucency, serum markers etc. The risk for my age group was 1 in 100 ignoring anything else, which was considered high risk.

NIPT has a high rate of false positives, especially for rarer trisomies and younger women. The probability of a positive test for Trisomy 13 being correct (rather than a false positive) in a 25 year old woman is a pathetic 7%. For Down syndrome it's only 51%. The older you are, the more likely it is that a positive result is true and for Down Syndrome is a pretty reliable 93%, but for Trisomy 13 a positive result is only correct 50% of the time. The 99% headline is very misleading and has led to many very unnecessarily worried women.

Source: McGill Journal of Medicine
Non-invasive prenatal testing (NIPT): a call for change in reporting practices
https://share.google/Wa74817hwJebfgThg

I personally had all three tested, but I can understand why some parents either decline the testing or pick and choose which ones they would like to be tested. It might not be a decision that I would make myself, but I would never judge another person. I think some commenters need to realise this.

The next thing I would advise is to have a couple of days to think about what you would like to do now that this has happened. Sit with the feelings and the reasons why you decided not to have down syndrome tested. If your reasoning was because having a baby with down syndrome would not change your mind on anything and that you would rather just wait until birth to find out (or possibly be told on a scan) then perhaps stick to the feelings that you had previously and decline hearing the results. I believe anything under one and 150 is classed as a course for concern but even if that is your result, or your risk is higher, it is just a risk factor and not a fact.

Exactly that. The test being done was a mistake, but the manner that that was communicated to the OP was disgraceful and unnecessary. As you say, she should simply have been informed of the mistake (test being done) if that was necessary and that should have been that, unless OP wanted to ask anything else herself.

Never underestimate the amount of push from some people with regards to testing and what outcomes are ‘acceptable’. My friend was constantly asked about something she’d already made a decision about and it caused her a great deal of stress. Here it sounds like the MW might have their own thoughts on women who refuse the tests - because why on earth would they tell OP in that loaded way if not? They’ve let their personal views affect their work potentially.

I think that’s a good thing in general, but I think the mistake was then compounded by the inference within the notification that those results showed something that might be perceived as adverse. I expect it was well intentioned but that doesn’t always change the impact.

I’m surprised that so many people only seem to be able to think of what THEY did re having the tests and the way they felt about knowing…without an ability to see or try to see why people might feel differently.

The fact OP chose not to have the test doesn’t mean ‘she’s not bothered about Down Syndrome’ . Anyone would be ‘bothered’ by it! But some people want to know as they will possibly terminate if Down Syndrome is possible and then confirmed by other tests…whilst others decide they wouldn’t do that. Some choose to test despite knowing they wouldn’t terminate …just so they can prepare. Others prefer not to know until the birth. All of the above are valid.

The point is OP chose not to know. And then they not only tested by also implicitly told her the results by the way they phrased it when ringing her. It would have been nothing to say ‘I’m sorry to say that the lab carried out the Downs test even though you requested not to be tested. Would you like to know the result’ But they didn’t do that. They implied there was something she should know. It wasn’t neutral in the way it was presented.

Op wanted not to know if there was a risk. But because of the way the ‘option’ was presented - she now knows there’s a risk. She has been told this without genuinely being asked if she wished to know.
I wonder how often this testing without consent happens …and if when it happens they always ask the parent if they want to know…or only if there’s a risk. Do they just keep quiet otherwise? I don’t know which is worse to be honest.

So now Op knows she has a risk. And now she has to decide if to confirm and get more info or not. She has to make a choice she didn’t want to make at this point. Her situation has been changed by the way the call was made to her. It suggests the nurse or staff member who called was not well trained to understand lots of people just don’t want to know the risk level …and they shouldn’t have it forced on them.

For those who choose to be tested, of course the risk Op has been given isn’t what they want..but they prefer to know and usually have more testing. Some might decide not to.

Everyone should understand that ‘wanting to know’ or knowing isn’t intrinsically better or the right or obvious or only choice. Many people decide they will deal with a disabled child if they have one …they are willing to do that …and prefer to enjoy their pregnancy without knowing. Some people couldn’t enjoy their pregnancy without knowing, but lots can and do.

So I’m really sorry Op that you e been forced into a bit of a corner. And I can see that it isn’t clear cut what you do next. Not having a further test might mean you spend the rest of the pregnancy worried in light of the risk factor…when you wouldn’t have worried if you hadn’t been told. This may well make you decide you need to know …not so you can decide to terminate or not, but just because the uncertainty is greater now. I think I’d be at this point. But equally, you can focus on the fact that 24/25 will be fine and you’ll go with it to wait and see as you would have done anyway. There’s no wrong answer.

But I would email about what’s happened …the testing without consent, but more importantly the language used on that call that clearly suggested there was info that meant choices might be needed…which was in no way neutral or leaving you in the same position you’d have been if the test hadn’t been carried out. That is the outrageous thing that’s happened. And it has changed your experience of pregnancy, which they had no right to do.

All the best in deciding Op. I’m so sorry this has happened and I hope you are able to make a decision you feel at peace with and can enjoy your pregnancy and baby.

Hi op,
I work in a lab which processes screening samples.
all antenatal screening samples form part of a national program which is carefully monitored and this should be recorded as a screening incident- I would suggest checking with the co-ordinator that this has happened.
From my experience incidents like this will be Scrutinised and taken seriously. Mistakes do happen but consent is important and valid whatever your decision, and the lab should be able to learn from this.
I hope you are doing ok, i can completely understand how you must feel.

I’m sorry you’ve have this put on you without your consent. However, now it’s happened and you know about it, the only way is forward – I would get the addition information so you can be prepared as you can for the future. It’s in the best interests of your baby.

I was badgered and bullied by a doctor as I didn't want the blood test. I ended up in tears and a midwife had to intervene. It was a horrible experience. He kept saying if we don't do it now it will be too late for amnio. I wasn't going to have amnio but he said it was because I was scared of needles.

But it’s not necessarily in the best interests of the baby.
This is my whole point about people making value judgements and thinking there is only one ‘right’ way forward.
For some people, they definitely want to know. Fair enough. It’s not wrong to choose not to know and not be tested at the first stage or then at any subsequent stage.

There is far too much assumption that someone needs to know and implied within that is often the suggestion that they may well then want a termination. Lots of people would choose a termination depending on what is revealed through further testing. But it is entirely the OP’s decision about if to know.

I agree with an earlier poster that the MW who called and gave the info revealed her own biases about testing and that people should make ‘informed’ decisions. She effectively informed the OP who didn’t want to know. It is not the MW decision to force info on mothers or to force them to be informed.

I think it’s hard for many to understand why people don’t want to know and also to understand why people might go through with high risk pregnancies. But lots of people want to do that. It isn’t helpful to suggest people should know or Op now should have the next stage of testing. It is up to her. There are pros and cons of both and the OP’s value and reasons are her own.

One reason lots of people choose not to have the first test, is they don’t want the dilemma Op now faces. But she’s been forced into that dilemma.

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.

My comment has zero to do with termination. I was 100% under the impression that the OP wouldn’t be considering one either way.

Yes, I think when you have a higher likelihood of have a child with additional needs, it’s best to be prepared going forward so you can plan. You do you, by my advice stands and it’s valid.

@TheignT I'm sorry that happened to you. That was wrong of him.

I don't particularly want to speculate on how deliberately or not the MW dropped this bombshell. Accidents happen and most people are less calculating than others assume, but as @TheignT found clearly these things do happen. But what I do know is that every single person telling OP on this thread that she should now definitely pursue the testing - especially when using loaded language like it's in the baby's best interest, or they don't know why you wouldn't - is adding to the pressure this MW kicked off, whether intentionally or not. She may have done it by mistake, but people posting now are not. Not pursuing the testing is a completely valid choice and OP would not acting against her baby's best interests by making that choice.

Also @Lyndsey8880 I hope you have spotted the super helpful post upthread with links to data on the varying risks of false positives at different ages. (Apologies I now can't find the poster to credit).

I agree. The first sentence did it for me - complete lack of capacity to understand someone else’s point of view.