Regretting not getting Harmony test

[zeena83]

Hi all,

I'm 26+4, age 38, and the NHS combined test at 12 weeks gave me a 1:3900 chance of baby having Down's. I was originally booked to have the Harmony test but after getting the NHS results, decided that they were pretty decent and the further testing and waiting for results would not help my anxiety (am being seen by the psychologist for my anxiety, through the maternity unit). I'm now sitting here really regretting my decision, reading thousands of MN threads by people smugly revealing their amazing experience with the Harmony test, talking about the NHS test as if there is no point getting it because it is worse than useless and talking about their 'perfect' babies born without Down's, as if a baby with it is somehow not perfect. It is generally making me really anxious. Yes, the obvious answer is not to read the threads but anxiety is the beast that it is and it keeps compelling me to search. Any advice about whether my regret is justified would be amazing. Have I made a stupid mistake in trusting the NHS test and thinking that the odds I was given were good?

Sorry, head's in a spin.

Zx

Your odds are good! I would not regret not getting the Harmony. I got the NIPT purely because my hospital left it too late to get the combined test and I couldn’t wait weeks for the quad test, I just wanted to know to prepare. My NIPT was 1:10,000 (the limit of the test I had) but then my quad came back 1:5400 (I’m 32) and if I’d have had that result before the private test I’d have been more than happy. There’s always going to be someone who is that one person and what would 1:10,000 tell you that 1:3900 doesn’t? Plus as a percentage that’s less than 0.03%!! Also although I’m glad I got the NIPT and the people were lovely, I really wouldn’t say it was the most amazing experience. You’re not missing out on anything special except to spend a lot of money and if I’d have got the combined test as planned and it came back with low risk, I would have left it at that.

Would knowing the baby has down's make a difference to you, would you have carried on with the pregnancy if you knew? If the answer is it doesn't matter, you'd have the baby anyway, then it's pretty pointless to worry about the test.

And your odds are good anyway, especially at your age I think. Age affects the combined test massively, but isn't a factor for NIPT and a lot of older mums who get higher odds first then receive really low odds from the NIPT.

NIPT isn’t foolproof. It is designed to be used to more accurately assess higher risk levels before you go down the amino route. Any woman doing an nipt instead of an nhs test either either doesn’t understand what they are testing for, or for whatever reason they missed or were too overweight for the nhs test to work. For example many areas that offer NIPT only do it for obese / overweight mums whose ultrasound results might not be accurate.

I’m prone to massive anxiety about things like this too.

1:3900 is really good for your age! Just your age alone gives you a background risk of 1:150 so your hormone and NT levels made the risk so much lower (see www.qmul.ac.uk/wolfson/services/antenatal-screening/screening-tests/calculating-the-risk-of-downs-syndrome/). The best odds Harmony give are 1:10000 so not really that much better than your results.

I had my first at 38 and never got Harmony either! I did get it this time but I am 41 which makes the background risk 1:70 and I was just more paranoid this time because it took us longer to get pregnant.

Presumably your 20 week scan didn’t pick anything up and you don’t have any other concerns?

Would it be worth you going for a private scan for another detailed look at the baby to confirm there are no ‘soft markers’ for a trisomy?

I'm also 38 and 26 weeks along. Never regretted sticking with what we get on the NHS. They picked up a kidney issue with my first and the treatment has been great. Harmony test seemed like a lot of money to me.

Honestly OP, I think this is your anxiety talking. I read lots of threads about harmony and panorama tests when I was weighing up getting one done privately and I don't really recognise what you're saying - talk about the NHS tests being crap, and their babies being 'perfect.'. My personal view was, having suffered a missed miscarriage before, if I was going to get bad news that might lead me to end the pregnancy I'd want it as early as possible, is I went for a test that could be done at 9 weeks. NIPT tests I believe can also test for things you'd otherwise only find out about at the 20 week scan. But you're well past those milestones. I assume nothing untoward was discovered at the 20 week scan, and you had really good results on the downs screening. So I don't really understand the worry about something having been missed: its always possible, even with NIPT testing, but its really really unlikely.

For me, the priority was other fatal foetal abnormalities, I wasn't really sure what we'd do if we had a downs result, it definitely wouldn't have been an automatic decision to terminate. I do think the language people can sometimes use about having a child without a disability of difference can be very problematic - 'there wasn't anything wrong with them/they were perfect' - but its usually meant as a shorthand for any worries not coming to pass.

I'm the same age as you and also pregnant. I think its worth going back to the team who are supporting you with your anxiety and seeing what else they can do, or if they've given specific strategies using those. It sounds like you're focusing your anxiety on this one area. Do you have a supportive partner?

Hi OP

Your odds are very good for your age, so your combined factors results must be good. I do not think you have any reason to worry

I'm in Ireland so we don't get any free screening in the public system so NIPT like harmony or panorama are preferable as the standard nuchal testing cost about 250 euros privately and has a lower accuracy rating.

I think when people talk about the NHS testing being bad, its the fact it has a higher false positive rating when all factors are combined.

The harmony or other NIPT has a lower rate of false positive for high risk as its working directly with dna. There's no need to worry if you get a good result on NHS screening, the problem appears to be with false positives rather than false negatives. These also happen with Harmony just less often

I have had NIPT Panorama and the only benefits are that I found out the baby's sex before 12 weeks and I knew that baby is low risk for the trisomy's. If a free screening was available I would have done that first to see how my odds looked.

That's not exactly right oz, women get the NIPT as it is more accurate, not because they don't understand it and/or are obese.

And OP I'm not sure why you seem annoyed at women getting the NIPT? They've decided to get a simple and accurate screening test, that you also want. Not sure what is smug about that.

Having said that OP, the combined screening is also accurate so I wouldn't worry. If you want the test that badly though, go and get it. It can be done any time in pregnancy after 10-12 weeks, there is no upper limit.

@Ozanj

NIPT isn’t foolproof. It is designed to be used to more accurately assess higher risk levels before you go down the amino route. Any woman doing an nipt instead of an nhs test either either doesn’t understand what they are testing for, or for whatever reason they missed or were too overweight for the nhs test to work. For example many areas that offer NIPT only do it for obese / overweight mums whose ultrasound results might not be accurate.

That’s absolute nonsense!

I’m under the care of a Fetal medicine consultant and when I saw her for my 12 week scan, I had already had the results back from my Harmony test done at 10 weeks.
She told me that there was no point in doing the NHS test as it was nowhere near as accurate as the Harmony
I’m a normal weight btw

Are you honestly saying she doesn’t understand she doesn’t understand the Harmony test, as one of the leading FMCs in the country?!

I didn't have any Downs Testing with either of my DC. Probably rather foolishly in hindsight, DH and I decided we would never terminate the pregnancy based on the result, so there was no point.

Would the result honestly reassure you or would it give you something else to worry about? Correct me if I'm wrong, but the only way of being 100% certain is with an amniocentesis.

To clarify, by smug I mean that there is an air of superiority amongst some people who get private NIPT testing, and they themselves say that it is a much much better test and they frankly don't even want the NHS test because it is so useless. So that's the point I am making, not that all people who choose it are smug about it. I even have a friend who talks like that about any NHS care, "oh my god, the people who do the scans are so useless, I wouldn't let anyone other than a consultant even touch me" etc etc.
Really appreciate all the very detailed replies, and I totally agree that this is definitely my anxiety honing in on this one thing. It's the flavour of the month. next month it will be something else like foetal movement etc. I will, of course, speak to the psychologist about this and I am sure it is in part because of renovation that I am having done at home which is making me unsettled. My partner is amazingly supportive.
In all honesty, we couldn't say for certain what we would have done had we found out that the baby had Down's. That was partly the reason why we decided against it, we just weren't sure that we could terminate. We had a private 16 week scan with a foetal medicine consultant and that was spot on, then the 20 week NHS scan was also spot on and I am high risk for some other reasons (bleeding disorder) so am being given further scans at 28, 32 and 36 weeks.
Again, thank you everyone for the reassurance that I didn't make an irresponsible decision and it's great to hear that there are other people out there in similar situations who did the same.
Wishing everyone the very best for you pregnancies.
@bakingdemon here's to being 38 and 26 weeks along!

Zx

@TreeSmuggler

That's not exactly right oz, women get the NIPT as it is more accurate, not because they don't understand it and/or are obese.

And OP I'm not sure why you seem annoyed at women getting the NIPT? They've decided to get a simple and accurate screening test, that you also want. Not sure what is smug about that.

Having said that OP, the combined screening is also accurate so I wouldn't worry. If you want the test that badly though, go and get it. It can be done any time in pregnancy after 10-12 weeks, there is no upper limit.

They are meant to be complementary but many private medical consultants incorrectly tell women not to bother with the NHS NT scan even though it has much more accurate at diagnosing Edwards, Patau, and certain kinds of Downs and of course other abnormalities.

This is not new info which suggests most women actually don’t know what they are paying or testing for. And yes many trusts now offer it to obese women where ultrasound either isn’t possible or has a large margin for error. My local hospital does this.

www.nuffieldbioethics.org/blog/nipt-private

@SW1amp - reputed consultants would never say that. At reputed clinics NIPT is always offered in conjunction with an NT specifically because of NIPTs limitations. The information has been out there for a while. At yes at many hospitals NIPT is reserved for obese women where the margin for error in NT may be really high.

www.nuffieldbioethics.org/blog/nipt-private

Reputed consultants absolutely do say that

The most reputable consultant in scanning, who invented the NT measurement screening test, doesn’t recommend having the NHS screening in addition to Harmony
From his clinic’s website, under ‘do I need other tests’ does not mention needing the NHS screening test that he devised…
fetalmedicine.com/harmony-test

[quote SW1amp]Reputed consultants absolutely do say that

The most reputable consultant in scanning, who invented the NT measurement screening test, doesn’t recommend having the NHS screening in addition to Harmony
From his clinic’s website, under ‘do I need other tests’ does not mention needing the NHS screening test that he devised…
fetalmedicine.com/harmony-test[/quote]
I think you need to read the link you gave me. Your reputed consultant is absolutely recommending the NT test in addition to NIPT

This is what I mean. Far too many women misunderstand what their doctors and medical advice is saying, have no clue about what they are testing for, and then pollute the internet with misinformation / spout rubbish so people who do want to do their research can’t do it properly.

@Ozanj

They recommend doing a NT measurement during a scan, and look for the presence of a nasal bone.

They do not recommend the combined NHS screening with NT and bloods, as you were claiming.

A harmony plus standard scan looking at Fetal anatomy is fine

@Ozanj I've read the Nuffield bioethics piece and I think the relevant point is that some clinics are saying it's near perfectly accurate, which it is not - especially when it comes to microdeletions (e.g, anything other than edwards patau's and down's)

Still, it has a much better positive predictive value than the combined test.

For the OP though, that doesn't really matter. The issue with the combined is that it's more likely to give you a false "positive" (concerning reading) than the NIPT, and sends more people for invasive/further screening that they may not need.

If the OP had a low risk rate and had a 20 week scan with no issues, there's good reason to think everything is absolutely fine.

The NIPT can be done up to birth, if you really want to do it OP, but you have had great results and it would probably just be a band aid on the anxiety rather than a real solution.

Maybe speak to midwives about your anxiety and please try not to worry about the tests themselves. You've had great results!