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Pregnancy

To nuchal scan or not to nuchal scan...

39 replies

waitinggirl · 04/06/2008 22:47

We are 11+2, had dating scan today (2 m/c last year, including a missed m/c, so was very tense) and all seems fine.

I am 35 and was expecting to be offered a nuchal scan as a matter of course. However it was offered as a choice, not as a matter of course and we were expected to make up our minds on the spot. We just couldn't, so we declined it. DH and I have no knowledge of Downs, but right now we couldn't even possibly think of terminating a pregnancy because the baby wasn't "perfect", that's why we've declined it. Are we being naive? Our parents have made it perfectly clear that they think we are idiots for refusing the scan.

I suspect I am terrified of it coming out positive, and then I would really have to challenge my views and consider the alternatives.

Has anyone else had to wrestle with this?
Anyone got experience of Downs?
How have other people arrived at their decisions?
Should we have been offered the test as a matter of course?

By the way, we know that it isn't invasive and it is only amnio and CVS which may possibly harm the baby.

Any thoughts/advice gratefully received
Thx

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Diege · 05/06/2008 07:12

Waitinggirl, I can sympathise totally. I only got my BFP yesterday (with no.4)and had a nucahl with dd3 (who was fine). I am really veering towards not having any tests (to detect chromosome 'problems') as even though I have wanted to know about every possible 'problem' with dds, don't think I would terminate for Downs Syndrome. I am 38 though, and am going back and forth on my decision (OK, so it's very early days, but I am a bit of a control freak!).
If I definitely wouldn't terminate I wouldn't touch the tests with a barge pole.

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constancereader · 05/06/2008 07:19

Not testing at all is a perfectly valid option and a reasonable choice to make. It is your decision only and no one else should interfere.

(I should point out that a nuchal scan screens for other conditions than down syndrome, hcps don't seem to mention this for some reason).

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CantSleepWontSleep · 05/06/2008 07:29

We didn't have to wrestle with this, no. Our decision was very definitely to decline all screening tests.

If you have it and end up with a high risk result, then you either have to have amnio or CVS to find out for sure (which as you say carries a m/c risk), or spend the rest of your pregnancy worrying about the result. No thanks!

As for whether you 'should' have been offered the scan as a matter of course, everyone is at liberty to accept or decline all testing during pregnancy, so I'm actually surprised that it wasn't something you'd thought about before.

Most areas have an age related cut off point above which they will offer a nuchal, and below which they won't.

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oopsacoconut · 05/06/2008 07:41

Hi Waitinggirl

To add a totally differnet spin on the topic - we did opt for the Nuchal - not because we would termiinate a downs pregnancy but so that we could prepare ourselves for what may come. Downs was never a worry for us if our baby had downs then we would deal with it. Our worry was the other 2 trisomy's which are also dectected at the same time, particularly Edwards syndrome which can result in a later loss and would need extra scans and medical treatment on birth. We wouldn't have terminated then either but wanted to offer our baby the best chance and also be able to get the extra care needed during pregnancy.

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hatrick · 05/06/2008 07:56

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hatrick · 05/06/2008 07:58

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LyraSilvertongue · 05/06/2008 08:01

I had nuchal scans with my two. My risk was very low and it was nice to have that reassurance.
If there was something wrong with the baby, wouldn't you rather know in advance so you can prepare yourselves for it?

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CantSleepWontSleep · 05/06/2008 08:02

Hatrick - genuine question - wouldn't the anomaly scan have picked up on the heart and kidney issues, so you would have known about them anyway, but saving a few extra weeks of worry between the nuchal and this?

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hatrick · 05/06/2008 08:06

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sarah293 · 05/06/2008 08:47

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EffiePerine · 05/06/2008 09:03

waitinggirl: we are in the same situation. You have to opt for the nuchal and blood test (combined) rather than the nuchal being standard. Your gp/mw (whoever booked you in) should have discussed this with you and given you some information to read, so I'd complain about that first off.

We hummed and ahhed over this a LOT, as I wouldn't terminate if the baby had Down's and hence I would decline the CVS as well. BUT I was worried about the other (rarer) chromosonal defects they screen for (esp Edwards) so in the end decided to have it done (my scan is in a couple of weeks). If the risks are high, we'll deal with it then.

It was a very difficult decision for me, esp as I needed to express a preference when the GP booked me in (though I could change my mind). I was happy having the 'automatic' nuchal with DS, but the extra blood test seemed a further step if that makes sense.

Sorry for waffling on: if you weren't sure, and wouldn't terminate, then you were right to decline. Sorry you had this decision forced on you: I felt bad enough having to make a decision a few weeks before the scan. Your hospital needs to look at how they deal with this

(btw, do other posters think there is more pressure to have the tests done? The leaflet I got was v 'tests are great' with none of the arguments against).

Oh (sorry more waffle) the GP was perfectly happy with the idea of declining the tests, as most his patients are Orthodox Jews who don;t do any tests at all our of principle. Really not unusual to decline.

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cmotdibbler · 05/06/2008 09:10

I decided to have the nuchal scan, but said that I didn't want to know the Downs result, just the Edwards. We knew that we would never terminate a baby with a chance of life, but would want to know if the baby had a very low chance of surviving so that we could prepare for that.

DS was not something that we wanted to know about to prepare for, as were very aware that there are many things that can't be screened for, and I have a cousin who has a significant brain damage which couldn't have been detected antenatally.

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LittleMyDancing · 05/06/2008 09:12

waitinggirl - we had nuchal scans with both of ours - DS1 was fine, very low risk. DS2 came back as very high risk based on the fold measurement, not the bloods, so we opted for a CVS. At the time we didn't know what we would do if it came back positive for a chromosomal disorder, but we both wanted to be prepared if there were problems.

The CVS ruled out chromosomal abnormalities but the consultant said with a very high nuchal fold measurement (ours was 4.8) it can indicate heart problems. As hatrick says, they can then refer you for a specialist heart scan at 18 weeks which can pick up things that the normal 20 week scan might not.

As it turns out, DS2 had a some very serious heart defects which would have required extensive and risky surgery for him to survive beyond a couple of days after birth, with very uncertain outcomes, and we reluctantly decided to terminate the pregnancy.

Would we have the scan again next time? It would have meant less heartache at the beginning and us going full term with the pregnancy, but our baby would very likely have died a couple of days after birth unless the defect was picked up very quickly. So I don't know, is the answer.

I hope this story hasn't worried/frightened you, but as hatrick says, they don't tell you that the nuchal fold can be useful for picking up other conditions, and I thought it might be a useful thing to know. Hope it's not tmi.

LM x

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Pidge · 05/06/2008 09:18

We came very very close to turning down the nuchal scan for baby number 3 (I'm now 23 weeks), and given our experience if I ever did this again I think I would reject the tests. We always felt we would not terminate for Downs (and I don't think I would for other conditions either). This time round the nuchal test itself was fine, but they found the nasal bone was absent and I was given a 1 in 200 risk of downs, amnio and CVS were discussed and we rejected them. But at the 22 week scan I was surprised to repeatedly find myself described as 'high risk' (to me 1 in 200 is not a very high risk of anything), and to be prodded again about further invasive testing and to be told "most parents in your position would go for CVS or amnio". They backed off once dp and I made it clear we weren't interested, but anybody less sure of themselves would definitely have been swept along into testing, and in my case the risk of miscarrying a healthy baby would have been as high or higher than the risk of actually finding a problem. I felt very uneasy about the whole thing.

I think sometimes there's an assumption that all extra information is good information. As hatrick has quite rightly said, occasionally a problem is detected which can then be tackled or at least monitored more closely. But the flip side is that in the vast majority of cases extra monitoring is often just a source of increased anxiety where there is no problem. And it's unclear if the extra testing etc lead to better outcomes overall.

In the end it's a very personal decision, and all parents should be supported in the choice they made.

Good luck for your pregnancy.

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sarah293 · 05/06/2008 10:24

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Jackamolsmum · 05/06/2008 10:29

I had the nuchal fold scan this pregnancy and it came back as high risk (1:45 - 1:190 with bloods). On the advice of people here I had a second opinion done at the Fetal Medicine centre who did a much more detailed scan and brought the risk down to 1:12650!

My original hospital had got the measurement wrong (3.4mm) and the Fetal Med centre confirmed it at 2.9mm. This might not sound a lot but it has made a huge difference to the risk. They recommended that we go for a cardiac scan (next week-fingers crossed!) as the measurement is slightly above average and may point to heart problems.

We opted against CVS and amnio and were made to feel like freaks by my hospital(was hounded by calls from the screening midwife. As recently as last week they were still advising me my termination options! I said this was only an option of the baby was terminally disabled so they have backed off now.

It was only in last weeks appointment that they looked at all the paperwork and realised that they have made an error with the scan. My consultant is very unhappy that the scans are so different and has ordered an investigation into what has happened there.

The Fetal med centre took 50mins doing the scan while my busy NHS only had 15 mins in which to do it in(plus baby was being very uncooperative!). If I was to go for no.3 I would opt to have this test privately and not hesitate to go for a 2nd opinion!

Good luck in what you decide

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waitinggirl · 05/06/2008 10:52

Dear All - i sit here with my husband reading these posts - thank you all so much for your advice/stories. We've now learned that the nuchal tests for more than DS, which we had no idea about before. We're going to think about it for a few days, talk to a few more people, and make a decision early next week - will still be 12 weeks then, so still a bit of time.

Thank you so so so much - it is so valuable to hear your advice (and thanks for sharing some really tough stories).

Good luck to you all - will let you know what we decide (if that's of any interest at all to you).

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mummy2bsoon · 05/06/2008 11:40

i am havin problems in my first ppregnancy, baby due in july- and in the beginnign at teh fetal center they kept askin if i wanted a amnio, i kept declining, because i didnt wanat to terminate if anythign was wroing. thsi was wen i was 21 week spregnant, im now 34 ( woohhooo) and to be honest, ive block it all out of my mind, until 2-3 days ago, and now i try not to tink about it, but i worry if my baby is going to be ok... i have soft markers, such as talipes, growth and kidney problems ( bubs needs op at 3 months) i keep askin them about neck fold, spine, everything ( i have scans every 2-3 weeks) they say all is fine, but wotn know until the baby is born...

to be honest, had i knw about this nuchul scan, and udnerstood it a little bette ri might of taken it- why because i woudl of been better prepared mentality, and now i spend every wakin hour prayin that my baby is going to be ok.

my advice- do what u tink u cn cope with, my hubby is very supporting and we got thru it together...and will face the unknown together.

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EffiePerine · 05/06/2008 11:50

Good luck

I'm really shocked at how you've been dealt with - it's not a proper choice if it is sprung on you at the scan!

Mummy2b: hope all goes well with you and your baby

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mummy2bsoon · 05/06/2008 11:55

thank u

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mrsboogie · 05/06/2008 12:07

The question you really have to ask yourself is what difference would knowing about a high risk/positive screen result make to you? If you are anti termination no matter what then the only reason to have screening is to be forearmed with the knowledge. However there are other markers for Downs and other disorders that might show up in routine scanning etc so you might get the advance warning anyway.

Personally I had a private NT scan and bloods as I am 40 and according to the prevailing wisdom - high risk. The results came back very low and I was reassured. I would have terminated if a positive result was found.

As you suggest you might find that your views on termination change if you were told that your baby had a serious problem. If you want that very difficult dilemma taken away from you then avoiding all screening is the right choice for you.

It is a very personal choice and that's probably why the doctors and midwives tend to leave it to the individual. It was never mentioned to me at m/w appointments - although by the time I was seen it was nearly too late anyway. My results from the private screening have been seen by doctors and my mw but have never been mentioned.

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finallypregnant · 05/06/2008 12:25

We decided against the Nuchal scan and bloods because we wouldn't terminate over DS. However, we were not fully informed of other defects such as Edwards Syndrome. I only found out about that by being on here at which stage it was too late. That was at about 26 weeks or so. I like someone said above have forgotten all about it but now that I am 38 weeks thoughts are creeping back in again.

Our NHS trust only offers the bloods. Any scan and bloods together need to be done privately. I still think we made the right decision as there is no way after 4 years of trying to conceive that I would have had an amnio.

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EffiePerine · 05/06/2008 12:32

no, the leaflet I got didn't mention Edwards either. The GP mentioned it, along with another disorder I can't remember which is pretty high locally

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NotABanana · 05/06/2008 12:35

I can't believe they said you had to decide there and then. Seems very unfair.

We were never offered a nuchal but would have declined all tests anyway. Which we did when 2 markers were picked up for Edward's Syndrome.

I personally think that if you wouldn't terminate, why have an invasive test that can result in a m/c, but a nuchal is different.

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MamaG · 05/06/2008 12:39

I haven't been offered a nuchal scan (19 weeks today)

Slight hijack, but hatrick, my DD had to be regularly scanned (8 years ago!) as they thought she had a kidney problem - she was scanned shrotly after birth an dwas absolutely fine - just thought I'd tell you

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