Nuchal scan today - Down's Risk 1:162 - they say low risk, I'm confused!(7 Posts)
I had my nuchal scan done today. I'm so confused by the result.
My adjusted risk looking at the scan and the blood tests is 1:162. With my DS (now 10 months) my risk was 1: 14000.
I asked the sonographer why it was so high and all she could tell me was that it was because of my hormone levels.
My free beta HCG is 160.30 IU/l equivalent to 4.124 MoM and the PAPP-A is 1.382 IU/l equivalent to 0.674 MoM, but I don't really understand what this all means.
The measurement at the back of the neck was in the normal limits 1.4.
The sonographer said that this rate 1:162 is considered low risk and that only anything under 1:100 is high risk, but this doesn't seem to be the case when I googled it.
Can anyone help me?
Should I have been offered further tests?
What exactly are the normal levels of free beta HCG and why else could they be so high?
Hi KBM, I'm sorry your hospital hasn't been helpful.
PAPP-A below the MoM (the Multiple of the Median) and HCG above the MoM are both soft markers for down syndrome. That would be what has affected your results, despite the low nuchal fold measurements.
My understanding is that 1:250 or 1:300 is considered high risk, not 1:100. Can you contact your midwife or FMU and ask what further testing might be available (if you want further testing)?
The only way to know definitively about chromosomal defects (you should have been given a risk ratio for two other trisomies as well: T13, which is Patau's syndrome, and T18, which is Edwards syndrome) is through chorionic vilius sampling (cvs) or amniocentesis. It would depend how far along you are in your pregnancy which of these would be more appropriate. Another option is to have further scans at a later stage to look for other soft markers for trisomies such as heart problems or structural problems if you don't want invasive testing.
So very sorry you are having all this worry. It feels like the floors been pulled out from under you i know. <hug>
Try to gather as much info as you can from your MW and the hospital. Pester if you need to. If you can/do decide to have cvs i would like to reasure you that it is not painful, and only takes seconds. The results usually arrive within 2/3 days depending on your area.
Please let us know what happens - many of us here have had to go through what you are bearing now, and will be here for you if you need us for questions or just emotional support. Fingers and everything crossed for you, lovie, that all is fine for you xx
Hi KBM, sorry you're feeling like this - I can really sympathise, I was in a similar position with very similar odds a couple of months ago.
Firstly, be aware that the high:low risk cut off varies throughout the country and depends which hospital you're tested in. I moved in January and the cutoff here is 1:250, whereas when PG 3 years ago with DD in Northamptonshire, the cutoff there was 1:150 and we didn't even get a 1:whatever number, just told high or low risk.
When I was v confused and worried about my results I got lots of help on here, but I also called ARC and found them incredibly informative.
They told me that most areas of England do use the 1:150 cutoff (so you would be low risk) but also explained the test in more detail which helped. There is apparently a lot of natural variation in the blood results, so some people have naturally higher or lower bHCG/PAPP-A - doesn't necessarily mean anything more worrying.
Some more information might help you make your mind up whether you want any further testing or not. You can have another scan to look for other markers eg: length of the femur, absence of nasal bone etc but these can be present/not present in babies with and without trisomies so wouldn't give you a definite answer.
The only way to get a definite answer is to have a CVS or amnio but there is a small risk of miscarriage - but most doctors doing it are incredibly skilled and well-practised and the chances of a problem are small.
sorry that you haven't been reassured - it can be a very difficult time. Just to reassure you, the nuchal measurement is very good, but the bloods are off (you don't say how old you are, so that will give you a higher risk too if you are a little older). FWIW we had a nuchal fold of 2.7 and ended up with a risk of 1:11 - based on very high HgG (pappa was normal) and maternal age. Everything was fine, and blood results in particular can be quite misleading.
Having said that, the cutoff for the tests we did was 1:200. Hope you get the information you need.
Thank you so much everyone for all your support, I really appreciate it.
I'm 34, 11+5/40 and live in London.
My midwife has said to call her tomorrow which I obviously will for more information.
The other trisomies were fine, 18 - 1:14092 and 13 - 1:44432.
Spoke to my midwife this morning, who then got the head sonographer to call me and explain the results. Feeling a bit happier, particularly because she has said she will scan me again in 2 weeks to look at things like the nasal bone etc.
Just hoping and praying that all will be well, and will do some more research into amnio's.
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