Neuchal scans - were you offered one, is it a new routine procedure?

[Janus]

Been a tough few weeks, I'm 12 weeks pregnant and have been having odd bleeds and so going through early pregancy scans, etc, which, thankfully, have all come through OK, heart beating away, etc. Today was the last one and my doctor asked me if I had booked by neuchal scan. I have a 2 year old and this wasn't procedure then and I was embarrassed to not really know what it was. She explained it is a Down Syndrome Test and that most people think about it now, I hadn't been asked before and apparently I have only a 2 week window to get the test done (best done between 12-14 weeks). I'm beginning to think about it now, I'm only 32 so I don't think it's an age thing but now I'm thinking she saw something on the scan and is gently pushing me to have one. Maybe this is a regular test now but I hadn't really heard about it, has anyone else being routinely offered this test??

We chose to have one - not because we were at high risk, but just to reassure us. It was fine - they just measured the bit of fluid behing the baby's neck on the scan, and then calculated the risk. I would say go for it!

I really think that you have to consider what nuchal scanning means. It is a screening test therefore is not fool proof. Would you want to terminate a pregnancy if there was a risk of Downs? I wonder sometimes if there is enough counselling associated with these tests. This test is not routinely offered in our unit. I have read that it has a 70% diagnostic success rate, which is not that great. That is probably one of the reasons it has not been routinely introduced.

Up to you really Janus - your GP will not have seen anything on scan and not said anything to you - if he had any concerns he would have shared them with you then. Instead, he was doing what he is supposed to do and making sure you know what your options are, so that you can book a nuchal scan if you want one. It's no good you realizing at 15 weeks pregnant that you could have had this scan, but were never offered it!
Basically, the scan is fairly new, and not offered everyhwere. It is by no means 'routine', but is definitely increasing in popularity. In my area (and I believe most areas), it is not offered under the NHS, but has to be financed privately - therefore you usually book and arrange the scan yourself with the private clinic/hospital involved.
As you are 32, you would not necessarily be classed as 'high risk' from the outset of having a child with an abnormality such as Downs Syndrome, but everyone, regardless of age, has an element of risk. it is up to you to decide which tests you would like to have to try and determine you risk factor for this particular pregnancy.
The AFP (or triple test) offered around 15 - 17 weeks of pregnancy on the NHS, is by no means ideal, and has an approximate detection rate of 60%.
The Nuchal Scan on its own is supposed to be 80% accurate. Some areas also offer the 'OSCAR' test, which is basically a nuchal scan and blood test combined, which reports an accuracy rate of 90%. As these tests are private tho', they do come at a cost - in my area Nuchal scan approx £110, OSCAR approx £170
The thing to remember about all these tests (AFP, Nuchal, OSCAR), is that they are not conclusive tests - they will just take into account your age/weight/gestation etc, and give you a 'risk factor' ie 1:400, of having a baby with Downs Syndrome this pregnancy. The only conclusive tests are invasive procedures such as CVS and amnio - both of which carry a risk of miscarriage.
It is up to you and your partner Janus to decide which tests, if any, you would like to opt for. Think about what you would do if you were carrying a child with Downs Syndrome - if you would terminate the pregnancy, you will obviously want to have tests which will be as reliable as possible in showing if your unborn child is affected. If you would do nothing at all, there may be little point in having any tests at all. OK, some people say they would not terminate but would like to know if they are carrying a child with Downs Syndrome or spina bifida to 'be prepared' - fair enough, but the only way they will know definitely as mentioned, is thru invasive testing - and would you want to risk miscarrying just 'to know'.
Lots of things to think about prior to any sort of testing Janus, but rest assured, your doctor will not have seen anything on an early scan and not said anything - he would be duty bound to discuss any concerns with you

I have just had the result back of my nuchal scan and blood tests. They were not available on the NHS in my area, so we went private (I am 36 with a 2 1/2 year old).

It was scary going forthe scan just incase they found anything, but we were lucky, when he did the scan he said it was normal. As our area does not scan until 19 weeks it was lovely to see baby. Were phoned last night at 10.50pm with the result of the blood test again fine.

I would say Janus, if you feel that you could not cope with a downs baby - you should have the test, but it also means you have to face the thought of a termination. Its your choice, I did it and am glad I did, I now feel more settled if you can when pregnant. Hope this helps

Janus,

I had a nuchal scan in both pregnancies although I think it was being trialled in our area for no.1 (4 yrs ago) and was routine by no2 (now 1). It only gives a statistical probability of Downs related to the risk at your own age, and is far from definitive. A friend of mine decided to follow up her calculated high risk with blood tests, scans and Amniocentesis only to have a perfectly happy healthy baby. You can equally decide to have no further tests.

I would suspect it is now something that is routinely offered in many areas, like the HIV blood test, and is not a reflection of any suspicions related to the first scan.

hope this helps,

LizS

I had a routinely offered nuchal scan with dd (Chelsea and Westminster) and found it reassuring. I paid for one privately this pg in Bristol - you're right leese (you should know!) it comes with a blood test and cost £170 but it really put my mind at rest.

Both my gp and my mum thought it was a complete waste of money and I shouldn't have bothered. But I am a worrywart and went for it anyway.

By the way - sobernow I can't believe you are 40 you don't look it!

Janus, I think nuchal scans are free in the Merton area (aren't you moving here?) and offered to everyone. But I agree - you need to think about why you are having the test and what you would do if it came out negative.

Hi, my 1st post, but thought I'd let you know that I assumed this was a standard test until I read this. We were told result after scan & I just assumed everyone had one (2 yrs ago). Interesting.

Janus,the nuchal scan is offered free on the nhs at some hospitals in some cases. In my case, I am 39 and pregnant with my second child, so my hospital offered the nuchal scan free automatically (done to anyone over 37). I did have the test, the results were fine, but ended up deciding to have an amnio as well (which also came back fine). My first pregnancy, 2 years ago at a different hospital which offered blood tests free automatically because of my age (37 at the time). My understanding of the nuchal scan is that its reliability at predicting downs syndrome is not great (40-70% depending on who you ask) and that the younger you are, the less reliable it is (i'm not sure it's terribly useful at 32, but I could be wrong). It is non-invasive and offers no risk of miscarriage to the baby, however there is the risk of false positive or false negative results and the anxiety that goes with them. But it does involve an ultrasound, so maybe just the peace of mind of seeing your baby alive and kicking makes it worthwhile.
If you go to www.babycentre.co.uk they have some pretty good explanations of the tests. My hospital (and I think most hospitals) has a genetic counsellor who can go through all the explanations and risks with you. They are generally much more informed about the latest research than gp's or consultants and better at explaining it as that is their specialty.
Good luck.

Janus - I had my dating scan yesterday (yes - I'm 11 wks pg!) and I'd got my doctor to ask specifically in the referral letter to ask for the nuchal measurement to be taken (I'm 37). It was well within the normal limits and reduced my risk of Downs considerably. Last time I had nuchal, then a Barts (quadruple test) which showed I was ever so slightly screen positive so I decided for my own peace of mind to have an amniocentesis (we'd decided we would terminate if we had a Downs result - you really need to decide this before you embark on tests) but all was fine. good luck with whatever you decide

Just to say, I think if you really want to find out if your child is affected with Downs Syndrome, having considered it fully, then a nuchal scan may well be a good idea, as at the moment it is definitely our most reliable non invasive predictor - but stress again it is a SCREENING test and no more, so is not conclusive. Maybe SofiaAmes got her stats from her local hospital, and they may well vary countrywide, but I know that in my area accuracy with nuchal scan is quoted at 80% (and, as mentioned in post below, higher again with OSCAR).
Think we should be careful assuming that because we are only a certain age, we will be fine, and therefore decline all tests. Yes, the probability of a problem is indeed less, but if you really want to know if your baby is affected, then you should consider tests which may help to give you an idea. Of all the babies BORN with Downs Syndrome in our area in the last three years, a high proportion were born to younger girls - simply because they assumed they would be fine, based on age related risk. Older women had less incidence of giving birth to a baby with Downs (primarily because the majority chose ante natal screening - they may well have gone on to terminate a pregnancy). Good luck Janus in whatever you decide to do

leese, I saw an excellent genetic counsellor after my scan, but she's only there if you ask, not routine like the booking appt etc. she quoted the 80% figure too.

I was quoted the 80% figure by both the consultant and the genetic counselor at my hospital, but when I went online and did some pretty extensive research, it became clear that it was not necessarily an accurate or constant figure. Also, don't forget that the nuchal test relies to a certain degree on the skill of the person who is doing the measurement (unlike the blood tests which are mechanical measurements of hormone/enzyme (?) levels and therefore in my mind somewhat less subjective).

I was not offered a nuchal scan but had read up about it and chose to have it done privately as I was 42 when I became pregnant. I was told my 'risk' was low at 1 in 250 ....... I then went on to have a baby with a rare medical condition (now resolved) of 1 in 4,500 !! I guess my point is that we tend to think everything can be tested/screened etc when, the reality is that these tests can't check for every single possible 'abnormality' - don't want to scare anyone, but just being frank.

Well, they say you learn a new thing everyday! I though Nuchal scans were routine and standard on the NHS all over the UK! I wasn't asked if I wanted one, my gp just assumed I would have it and booked it for me and so I went along and everything was fine (I was 29 when I was pregnant with DS) - I was with East Surrey Hospital in Redhill.
What did upset me though was what the radiographer said after the scan. I was given a really low risk factor (something like 1 in 4000) which made us happy but then she came out with 'Of course this doesn't mean that your baby isn't the "one" '. It really upset me as it was very tactless of her I think - but she was probably only trying to be helpful.

Absolutely SofiaAmes, I do agree re: how skilled the technician is, but in our area there are only very few people trained to do the nuchal scan - therefore these few are highly trained. As mentioned before, detection rates may vary countrywide - and indeed, if someone less qualified does the scan it may not be as accurate.
The scan may indeed be more subjective than the blood test, but is undoubtedly more accurate. There are various factors which can alter the results of the blood test significantly (if you've had a recent bleed, if you have a mulitiple pregnancy, if you're dates are incorrect even by a small margin). It is for these reasons I have increasingly grown wary of the AFP

The last few postins reflect what I feel about antenatal screening tests. Even as a midwife I breathed a sigh of relief when my AFP came back normal. That was the only test available then. These tests do not however tell you if your baby is normal. They tell you the risk factor of your baby having a neural tube defect or Downs. Abnormal results can fill women with dread as they then go through a battery of other tests to then often find that their baby is 'normal'.

I remember a doctor giving us a lecture on scanning. He says that women are not prepared for the fact that abnormalities may be found and that sometimes he felt like he was on a seek and destroy mission!

There are more and more people speaking out about the hurdles women face in being offered so many screening tests. The joy of pregnancy can be lost.

I think I agree with what you are saying mears. I am about the only woman I know who doesnt particularly enjoy having scans. I find the 12 week one quite odd and disorientating, and feel very anxious and stressed beforehand. We have one at about 20 weeks here and although I enjoy seeing the baby more then, I still feel incredibly worried and sick while waiting to go in.

I have never found them bonding. I feel bonded to the baby when I feel it moving around for the first time

I had a m/c at 9 weeks with a previous p/g, although I had had a scan a few days before that showed the baby alive and kicking. I think that destroyed any trust I had in them, although I didn't enjoy them much before that.

I had a nuchal scan with my third child, born last October. It wasn't available when the other two were born.

It was offered routinely at my local hospital. Because of my age (I was 34 then), my risk of having a baby with downs syndrome was 1 in 144. After the scan, this then dropped the risk to 1 in 2000 (slightly higher than that but couldn't remember the real figure).

I agree, Mears, when you talk about hurdles in pregnancy. That's exactly how I felt in my last pg, as though it was an obstacle race and only if I cleared them all would I have a baby. I had an amnio with No4 due to my age, and it was a pretty scary time, but even after that good news, there was still the anomaly scan to get through.

It would be interesting to know whether scanning and testing has resulted in an overall reduction of babies born with abnormalities, and whether the reduction has been due to terminations or a natural decrease. I know the mortality rate has dropped a lot. It was about 15 when I had my first in 1975 and is between 8 and 9 now, I believe.

just to re-iterate what Leese is saying loud and clear, the nuchal scan is NOT diagnostic - however low your probability, you could still be carrying a baby with Down Syndrome. The doctor who explained to the expectant mum that she could be the 1 in 1:650 was only doing his job. The advantage it offers is it is a three month scan which is earlier than some hospitals offer, so for 'is there anyone in there?' reassurance it's great. To know for sure if your child is affected, you need invasive tests.

Ghosty - I think that the medical staff have to make that point about 'your's might be the one .... (obviously sensitively of course).

A close friend was told she had a 1/100 chance of having a Downs Baby ........ the baby was born with Downs.

Also, whenever you have an operation or aneasethetic you have to be told of the risk factors.

Lindy, I guess you are right and the pregnant mum needs to know but it just put such a downer on an exciting time for me and I began to worry even though I had such a low risk.