AIBU to want the results of a nuchal fold scan without bloods?

[WorriedWart]

I am prepared to accept that I may be wrong or unreasonable here - I am definitely hormonal which is probably why this is upsetting me.

I am 7 weeks pregnant with twins. My hospital offers the triple test for risk of downs syndrome (scan, bloods, age combined). I asked to have just the likelihood based on nuchal scan. This is because I have read the the blood tests are not accurate for multiple pregnancies - to the extent the some hospitals refuse to do blood tests for multiples, due to the risk of false positives, and rely on the scan instead.

My hospital has refused to do this and will not do the nuchal scan unless I agree to bloods as well. If I come back as high risk they will not tell me what the risk is on the scan alone. They say this is the most accurate way to do it and this is just what they do.

I know a girl who had a false positive with twins and then lost both babies during the amnio. I accept that the hospital consider the triple test to be more accurate but I don't understand why they can't just give me the information I am asking for and then I can make my own decision based on that information. It is perfectly possible to do a nuchal scan without blood tests and I could have it done if I paid privately.

I have to call the hospital back today to book the scan. Should I just give up and have no tests at all, or should I try harder with the hospital?

Any thoughts or experiences would be appreciated.

You might want to look at the information available here

resources.fetalanomaly.screening.nhs.uk/parent/screening-choices/downs-syndrome/step-by-step/?page=100048

It confirmed what your consultant said that the advise is to have combined test (which is interesting as hospital I used to work for only did nuchal scan) as this can give figures for each baby .

At the end of the day if you have the scan they cannot force you to have blood tests (just refuse to consent to this) and I am not sure they can withhold your scan results either

I had just the blood test with my first pregnancy time and the results caused me worry throughout that pregnancy.
I am currently pg again and now my hospital offers the combined test. I was really undecided whether to have it or not, and also asked whether I could just have the nuchal test. The midwife couldn't answer this but said I was free to refuse both tests. The way it worked at my hospital was first I had the nuchal fold screening (which I believe would always be the case as this dates the scan and if was too early would rebook a later one). The sonographer took the measurements and verbally told me this was within low risk guidelines. I then went for the blood test and weeks later got the combined result through.

I could have walked out after the nuchal scan with just the verbal "low risk" if I had chosen to. I will check too as the sonographer may have written down the measurement in the scan, which I am sure through the power of Google had I wanted I could have used this to find a nuchal measurement risk?

x-post.

Just saw you are planning to refuse both tests so ignore my post!

I refused the Triple Test Bloods for my first pregnancy and the bloods and scan for my second because I knew that I would never abort for Down's Syndrome and would not have the amnio either. I therefore didn't want to be told I was medium or high risk and end up worrying about it for the entire pregnancy.

I knew that Edwards and some of the other life limiting or life incompatible things that the bloods test for would show up on the 20 week scan anyway.

I think refusing is the way to go - especially if there is no way you would have the amnio in any event. Even if they said you could just have the scan and they said there was a possibility of higher risk then you are still faced with the choice of amnio or worry for 6 months.

Good luck x

Just wanted to add that when I had my 12 week scan (17 weeks ago so quite recent) the nuchal fold measurement was printed in my notes by the sonographer - there was a space for it so I assume this was standard? I came back as low-risk and gave the matter no more thought but presumably you could use that measurement independently and just throw away the letter from the NHS when it comes without reading if you wanted? Good luck whatever you decide...

Hi there,

We have moved this thread out of AIBU and into Antenatal tests/choices.

I think that not having the test if you wouldn't change anything wrt the pregnancy anyway is wise.

I had very high risk results with ds3 (based just on bloods, no scan offered, never have been offered one here or back in Somerset actually, that's 3 PCTs in total not doing it but I digress...). All through the pregnancy it was just at the abck of my mind, even after a routine scan said there were no markers later on. DS3 does not have Downs Syndrome. He does have autism which can't be tested for. So the scan gave us nothing at all.

I can also add that I came back low risk and went on to have a DS who has DS.

There is a good NHS leaflet on down's screening for multiples (Google Screening for Down's syndrome in Multiple Pregnancy, for some reason can't get the link as it brings up a PDF alone) which will explain why having a blood test alone is not a good idea but the combined test is recommended. This will give you the most accurate result. I would go to the FMC if you can as their nuchal is far more detailed and their bloods will take into account the elevated levels in twin pregnancies.

Its fine not to have nuchal screening, lots of people don't. Enjoy your pregnancy instead of stressing about false positives.