Do I allow nuchal measurement even though I won't get told the result?

[MsBrandybuck]

My dating scan is next week when I should be 12 weeks 4 days. My hospital does not offer a nuchal scan yet but the sonographers must be being trained at the moment as there is a notice up by the scanning rooms. It says that they will measure the nuchal fold unless told otherwise but you will not be told the result. If we want an actual nuchal scan we have to pay to private which is not an option for us at the moment anyway. Tbh I'm not sure we would do so if we had the money.

We have chosen not to have the blood tests as I won't consider invasive testing because of the risks. DH is fully behind me on this. I am 42 so classed as high risk based purely on age. I suppose the nuchal measurement is similar to the blood tests in that it will either increase or decrease my supposed risk without giving a definite answer.

I just don't like the idea of the hospital having more information about our baby than we do. We will be having the 20 week anomaly scan but that's more so that if there are any problems requiring urgent action after the birth, our baby will have a better chance.

My gut feeling is to refuse but I am feeling very hormonal and think that I am probably being unreasonable.

I don't think it is unreasonable at all. I wouldn't want them to have information about me that I didn't have access to either. You have the right to say no, so say no

Again I would say you aren't being unreasonable, if the sonographer is training then there will be someone with them trained in nuchal fold measurement to verify the sonographers results otherwise what is the point in them taking the measurements. As you are being kind enough to facilitate the sonographers learning then I don't see why you should have the benefit of a "free" nuchal scan i.e. be given the results.

Thank you, don't feel so bad now

Another thing is that I have read on another thread that someone refused the nuchal measurement and was then told the result as it was good . So am now wondering (being a cynical old cow) if they'll do it anyway but then I won't know will I? Oh my friend is probably right ... I think too much

I would be asking the hospital what they do if they think they identify a problem? It wouldn't be very ethical if they are truely doing nothing if they suspect a problem?

I'm not convinced that they can take a measurement and then not tell you. I think that you are fully entitled to any information that they hold on you. Try a legal thread - I think that there will be Data Protection/Freedom of Information issues here which you could use to insist that you are told (always assuming that you wish to know)

i would allow it. how else will they train?

and I wouldn't care if I was told or not, presumably you aren't in case it's inaccurate as they are still training. and seeing as you wouldn't take it any further anyway then it's irrelevant.

so, yes, I would allow it

I think the reason they can't tell you is because they're training and it won't be to the accuracy patients demand from a fully trained up sonographer, in which case whatever they tell you could be worthless, and either potentially alarming or risk offering false reassurance.
We all want to be seen by medical professionals at the top of their game, and they have to train somewhere.

It is true that they need to train, but if the OP feels uncomfortable she should not feel guilty about refusing. That is her right.

absolutely, of course it is her choice.

but she asked if we thought she should, and I said that if I were in that position, given the rest of the info in her OP then I would be more than willing to use me as a guinea pig.

i don';t think that anyone has implied that she should go ahead with something she is not comfortable with

I wouldn't let them. I agree with you: I would hate them to have information about my baby that I don't have. If they want to train, then they should offer to share the results with you. As someone said, surely if they are being trained there must be an experienced sonographer there, so surely the results would be as reliable as any other? Alternatively they can arrange training on people who have decided to have a nuchal scan, not those who aren't. Irrespective, I wouldn't like it and I don't think it's in the least bit unreasonable to request that they don't do it.

You will be able to see the measurement as she takes it on teh screen anyway. I had a nuchal scan last week and each time she measured it (3 times) I could see the measurement as she was adjusting her little cursor things on the screen. Mine was 1.1 each time.

I think from a legal perspective they can do this because they will only be storing the measurement, I assume they won't store your personal details (i.e. who you are) although you would need to clarify this with them.
Normally I would say what is the harm in them having this data if it helps with training etc, but I think in this circumstance I would quite understand someone wanting to say no.

yes, but having a trained sonographer with them isn't the same as a trained sonographer doing it themselves.

so imagine it came high, and someone then had an amnio and then miscarried because of it and there was nothing wrong with the baby. there is a chance that person would sue becauyse the person who did the measurement was only training and thus may have made a mistake with measuring.

do you see what I mean? it's a shame, but that's hte world we live in right now isn't it?
i thnink that the more opportunity they get to practice and train the better.and as I said, would have no problem with them doing the measurement and not telling me the result.

I would have to ask them what they would do if it looked like the measurement was big? As Stripeyknickers said, you'd like to think they'd flag it up if they even slightly suspected a problem.

I went for my dating scan at the same weeks. My hospital does offer nuchal but we declined because we decided together that since we would not terminate and would not have invasive testing so there was no point in having the nuchal.

I'm 41, which is one of the bits of data they input to get your (only vaguely accurate) score. If I had come out as high risk (which might be 1:60 or something which isn't really very high when you think about it) we would have been stuck with the worry all through this pregnancy.

This test is the cause of so much unhappiness and worry - yet we don't worry about the more common/severe/debilitating things they can't test for.

Many people seem to have it because it's a scan and they want to see their bubs

Like you, I had dating and nuchal scheduled together.

When we told the dr we didn't want nuchal she seemed amazed that we would turn down info.

We explained we only wanted to know something that was life threatening for me or the baby.

She did it anyway without saying anything and told me the result was low-risk. Of course I was thrilled but that wasn't the point!

I know this wasn't really your question but the nuchal issue really gets to me. I think it blurs the real issue which is a conversation parents to be need to have together about a very difficult issue.

Honestly, if I'd paid any attention to statistics I wouldn't have had IVF at 41.

Congratulations on your baby! I hope you have a really lovely, stress-free pregnancy.

But you would think that the trained sonographer would be watching the trainee do the measurements and then meaasure themselves to check. Otherwise the trainee could be getting it totally wrong and would have no way of knowing.

i don't know. i have no idea how they train.
perhaps it's just the one sonographer in there, and they take the measurements and then print those pics off for another one to check that it's been done right?

But if you 'find out' the score i.e. on the screen or if they end up telling you, and it's not low risk, you'll end up worrying about it. If you've decided together against invasive testing, why risk knowing something that will spoil your enjoyment of the pregnancy? I would never usually refuse to help with training, in fact a trainee did my last scan, but in this case if it was me I would ask them to test on someone who was happy to have a nuchal.

A friend has just been told she is high-risk - even though she specifically asked the sonographer not to be told. She now has 8 weeks of stress waiting for the 20-week scan, which may not resolve anything anyway of course.

i would presume that they would turn the screen away from you while they do the measurements for precisely that reason,

as I say though, obviously you shouldn't do anything you are not 100% happy with and if that means saying no to it then you have every right to

I think you definately have a case for saying you dont want a trainee sonographer to san you, and I would think that you would be given the option to say no.
Personally I would allow a trainee to scan me as I think people have to learn on someone and it will benefit others. Also if you're not thinking of having a nuchal scan and not interested in the result anyway, then surely you are the best person for a trainee to see?!

Surely nobody's 'not interested' in a nuchal result! It's much more complicated than that.

Sorry I had to spend a few hours away from the pc as feeling very sick today. I still haven't totally made up my mind but you've all given me some interesting alternative views.

peachyfox You're definitely right there "It's much more complicated than that"

Hi Ms Brandy! Well my earlier msg said I wouldn't allow them to do it if they wouldn't share the results. Having now had my scan (yesterday) I can add a bit more to that!

I was told by my midwife that a nuchal scan would cost £200 so we decided against that as, like you, would not go for invasive diagnostic tests. However unlike you, I WILL take the blood test (free) on the basis that if I am high risk I would like to be armed with more info by the time of birth.

At my dating scan I noticed that the sonographer was looking at the head/neck area, so I asked what she was looking for. She said that in a few months they will start routinely taking nuchal measurements, so when a baby was in a good position it was helpful to take some example / practice measurements. She told me the reading was fine (although didn't tell me the actual measurement or the risk factor), and that if it had looked unfavourable they would get in touch to offer another scan or further tests (to be honest I was only half listening to all this as I was so mesmerised by beautiful scan ).

I would say that if you wouldn't be opposed so long as they indicate the results, then it's worth discussing this with the sonographer and refusing if they never give any indication whether favourable or otherwise. However for many people they simply don't want to know, and if that's the case I would be very firm and clear that you don't give your consent, as if you don't know you won't like the idea that they know.

HTH!