Nuchal results 1 in 293 - feeling worried

[LittleDoe]

Hi all,

I received the results from my combined nuchal fold scan and blood test yesterday and my risk is 1 in 293. I am 34. Apparently this is classed as low risk and no further testing is necessary but I can't help thinking it's pretty close to high risk (which I think is 1 in 250). I'm so worried. In some ways I wish I didn't know what the ratio was, as with my DS I wasn't offered nuchal fold testing and just had the blood test which just came back "low risk". He could have been an even higher risk than 1 in 293 but we'll never know of course (he's 100% fine).

Probably makes it worse that I spoke to a friend at the weekend who is also pregnant and her ratio was 1 in 11,000.

Just wondered if anyone was in same boat or had similar results with a previous pregnancy.

x

LittleDoe I haven't had my results back yet, but I am one of the world's biggest worriers when it comes to these things. Were you ever shown a diagram by anyone at the hospital showing the proportion of results that come back as high risk that have the condition? A handful of people actually had it, whereas many more had been flagged as high risk. I would recommend two things to you:

1. Go and speak to your midwife and ask her about what I've said: how many people actually have babies with a condition, compared to how many are flagged as high risk.

1. If you're still worried, you could pay for a private diagnostic test.

(Incidentally, we were told that of those flagged as low risk, an even tinier proportion of those also had the condition)

OK, now don't panic, dd was about the same and I was about the same age as you. With ds I was 35 and the risk was 1 in 12,000. I was concerned with dd, however I weighed up the consequences of having further invasive testing and a possible miscarriage/harm to the baby and doing nothing and taking the chance as the Dr's/Health professionals thought it was low risk and nothing to worry about. I am glad I didn't have any further testing done.

Both children are fine . hth.

With DS ( my first after a MMC ) we had a 1 in 260, I was 35 when pregnant. They were doing some early research into absence of nasal bone in foetuses of mothers 35 plus and couldn't find one for DS, so CVS was recommended, as the odds weren't good. What they didn't tell us was that the research sample was very small and in its infancy.

We had CVS, depsite reservations, but wouldn't have had further testing if we'd just had the nuchal. DS was fine, nasal bone showed at 16 weeks, he has a small but perfectly formed schnoz.

With DD I was 38 when pregnant and the risk was 1 in 250 so I had a blood test which brought the odds down, so no further tests.

You must do what feels right for you.

Also, if it helps to put things into persepctive 1:293 means about 0.3% chance that something is wrong (if my maths is correct).

Where I am I am pretty sure they don't offer further testing unless you're at 1:150 - and you're a long way from that. Apparently they had to drop it from 1:250 because so many people age 35+ were getting 1:250 results that it started to be a bit impractical to deal with that many referrals!

The basic age-related risk for you is somewhere almost bang on 1:293 anyway (I remember seeing it on my form as I am also 34) which would suggest that this is 'average' for our age. Translated into percentages, what you're actually talking about is a 0.3% chance that there might be something wrong - or a 99.7% chance that all is well.

Try to think of it as being a 292 to 1 chance of everything being OK!

I am 35 and got a 1 in 134 risk on combined nuchal and blood tests. I decided not to have invasive testing but to wait until the 20 week scan to see if that threw any soft markers up. The 20 week scan was completely normal, obviously this doesn't mean baby doesn't have DS but I decided this was good enough for me and stuck with the decision to not have invasive testing. I'm now 33 weeks and whilst there is a niggle at the back of my mind that perhaps I am the 1 in 134, I've mostly remained positive. Will let you know how I get on in around 7 weeks time!

Easier said than done, but try not to worry. Look at it this way, you have a 292 in 293 chance of your baby not having an abnormality. Flipping the odds makes a huge difference to how you feel about it.

I had 1 in 34 (I am also 34) which shocked me to the bone. Even so, if I bought a lottery ticket with 33/34 chance of winning, I'd do it.

I did have a late amnio at 32 weeks after 20 weeks of a nightmare of stress and worry, as I did not want to risk an invasive test pre-viability - and he does not have Down Syndrome.

As a result I've spent a LOT of time on various boards and honestly, it is very unusual even with horrible odds like 1 in 10 for things to come back positive. A detailed scan will usually halve your odds again if no soft markers are found. Does 1 in 600 sound better?

I'm 30 with first baby, and my NT risk was 1 in 316 (or something like that). The cut-off is 1:150 so I wasn't too worried, if a little surprised it wasn't lower risk given my age.
Thinking about additional testing hasn't even crossed our minds - although we'll be checking the soft marker thing at the 20wk scan in 3 wks. Try not to worry, if you want speak to your midwife maybe?

Thanks for your messages everyone, they're all really helpful. I think I am just a little shocked at getting such a high-ish risk (although I know statistically it's a low risk and actually isn't that far away from my age related risk). I just kind of presumed I would be somewhere in the thousands and that we wouldn't need to give it a second thought.

I will do some research on the soft markers at the 20 week scan, I hadn't read about that elsewhere. Given the risk of miscarriage etc with amniocentesis / CVS we just can't justify going there with the odds we've got. Unfortunately that puts us in that category of parents who still have a concern but can't do anything about it :(

Will keep positive and keep flipping round those odds (0.03% chance...not 1 in 293!).

Sometimes information is just not helpful!

Meant to say 0.3% (I'm meant to be good at sums)

When I was 35 I was given a blood test ratio of 1:40. DD doesn't have Down's syndrome.

If you're worried, please do talk to your mw.

Best of luck.

ok,with DD1,at 40,I was given a result of 1-50,000 odds (triple test like you).then with DD2,when I was 42,the odds were 1-160. that wasn't classed as high risk,as it was better than the odds for my age alone,but it did startle me,as it was so dramatically different to DD1's odds. I didn't have any further testing as I wouldn't have terminated and I didn't want to risk a mc, but I did chat with my consultant about it. Neither daughter has Downs. My best friend had odds of 1-260 when she was quite a bit younger than you, (28).Her son doesn't have Downs. Your chances of having a baby with Downs are very slim,but talk to your consultant and see how you feel then.

It helped me to remember how pointless it is comparing results with others. The likelihood of there being a chromosomal problem is almost negligible and when you look at your (almost certainly completely healthy) baby and someone elses who had odds in the thousands it all seems so meaningless.

I got a 1:670 with my first at the age of 26 and was thrilled. It was pre-obsessive googling and I didn't have many friends to compare results with. This time I have had a 1:700 (32) and am much more neurotic thanks to comparing with friends and googling.

I could have written your post 8 weeks ago - in fact, I think I did! :)

I am 34, my NT combined with bloods was 1:264 or something. I was worried. I googled.

I had my 20w scan yesterday and baby passed all those tests with flying colours - all heart chambers fine and dandy, stomach, brain, pallet - all looking good. I feel a lot better now.

Am sure it will be the same for you :)

'Pallet'?!? yes, my baby is a long distance lorry drive already....

I had 1:160 after nuchal/bloods which was lower risk than my age (39 - 1:90) but if course because I did fall in tge high risk I was terribly worried. I have a disabled child already (physically with cerebral palsy) and because having a more high needs child would have severely compromised his care I decided after weeks of heartache and worry to have tge amnio. The doctot's mc rate was 1:300 or better. It was the hardest decision I've ever made but thankfully all was well. It was the bloods risk on their own which had worried me (1:25) but I later found out if you were slim before getting pg you had a higher risk of getting a high reading for I think AFP.

Good luck and as everyone else has said, it is pretty low odds. Someone intheir early 20s with a 1:20000 risk can still be that one.

Hi LittleDoe,
I agree with the others, not a real cause for concern, but can also identify with how you feel. It it'd help put your mind at ease, there is always the option of doing a quick integrated test (combined nuchal and further blood tests analysed together) in a couple of weeks time, which will give you a far more refined result.

This below is one of my previous posts re. the subject:

'Just to let everyone know that at present the above [Wolfson] institute offers one of the most cost effective ways of testing for Down's and open neural tube defects. The integrated test also identifies pregnancies at high risk of Edwards' syndrome.
The combined test is the first stage of the integrated test - this is available on the NHS. Once you had this done make an appointment with the Wolfson Institute for a quadruple test (£80). They will analyse both test results together which will essentially become the integrated test.

I just had this done by them and was most satisfied with their services (for a mere £80!!!).
They also saved me nearly £300 [schock] by not going to the London Ultrasound Centre (LUC).'

Just to further add to my message above, the integrated test is one of the most effective non-invasive methods of screening for Down's syndrome. Here is the link that explains about the test itself....(and no, I'm not on commission;-)):
www.wolfson.qmul.ac.uk/epm/screening/integrated.html

I will be 40 when DC3 is born and my background risk was 1:122, NT scan alone showed odds of 1:638, Bloods showed 1:8, and combined was 1:38!! Obviously I freaked out.

I went ahead with CVS as I couldn't wait for amnio and luckily they confirmed that DC did not have Downs.

1 in 293 means that for every 293 babies you have, 1 may have Downs. Try and focus on the positive: you have a 292 in 293 chance in having a perfectly healthy baby.