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Original poster

Nuchal fold scans and blood tests - someone please TELL me what to do

39 replies

KIQFTM · 20/10/2004 16:22

I know there are lots of threads on this and I have read them but need a bit more advice here please.

Have just rung about arranging one at Leeds - total cost for scan and blood tests = £185 - steep I think and bloody annoying that I should have to pay for it at all.

Anyway, person I spoke to was telling me that detection rates for NF scan alone were (for my age) - 82% and false positive rate of 22%. With a blood test at the same time, these rates changed to 92% detection and 14% false positive.

The false positve rate doesn't seem that much of a drop to me. Are they trying to get me to spend more money? I know this isn't a diagnosis. Am so rubbish at making decisions.

Did all those who had a nuchal fold have the blood tests as well?

Also, anywhere else in the North/North West that does these scans?

Thanks

OP posts:
Original poster
KIQFTM · 20/10/2004 16:23

Should add, it's £100 for just the scan, the blood tests are and extra £85

OP posts:
beansprout · 20/10/2004 16:27

Presumably the more info they have (scan plus blood test) the more accurate the result will be. I think it is outrageous that you have to pay for the test, but that's not much help to you.

My test included a blood test too, it's just how they do it at my hospital (in London). I would say if a thing is worth doing, it's worth doing well, so would pay the extra (how much extra is it) to get a more accurate result, otherwise you are left wondering, which isn't really the point. Hopefully the result will be ok. Good luck.

Uwila · 20/10/2004 16:27

SOrry, can't advise on the northwest. But, I would highly recommend the Fetal Medicine Centre for Nuchal scan and blood test for £130. I'm going to pay for them to do it even if the NHS offers it for me. The peace of mind that results is well worth the investment in my opinion. And, the service provided is hugely superior to anything I've ever recieved on the NHS. (however, I'm not a big supporter of the NHS)

redshoes · 20/10/2004 16:29

down here, it's just the nuchal fold scan without bloodtest...v. annoying you should have to pay. No way your gp could refer you? Sorry can't remember detection rates but had mine done at Harris birthright centre and they are soooo impressively competent, you get a proportionate risk stat based on the scan + your age and the choice of then going for cvs or amnio if necessary.

pamina3 · 20/10/2004 16:30

This reply has been deleted

Message withdrawn at poster's request.

bundle · 20/10/2004 16:31

kiqftm, is there a particular reason why you want the test? how old are you?

Original poster
KIQFTM · 20/10/2004 16:33

bundle - I'm 40. I'm just one of these need to know people - no idea what I would do if had a negative result

OP posts:
bundle · 20/10/2004 16:36

I'm nearly 40 too, and had both nuchal and bloods (quadruple) for my 2 pregnancies. both turned out fine, btw but i also opted for amniocentesis as I had to know and the 2nd time around my risk was high for a particularly nasty syndrome which usually means the baby doesn't live beyond a year anyway. i think my main advice would be decide before you have the bloods/nuchal what you would do if it was a bad result, and before you have an amnio, decide what you would do with that information too (ie whether you would terminate a pregnancy). if the answer is you'd continue with the pregnancy regardless of the result, then i would seriously think about not having any tests. hth.

Uwila · 20/10/2004 16:38

I think that need to know people and I am one of them benefit greatly from this test. I was 32 for my first pg. And I can't remember the exact number, the baby's chances of having downs was something like 1 in 2,500. I just remember the change was so smal I regarded it as negligable. This meant I had no cause for a risky invasive test and it gave me great peace of mind when there are som many other things to worry about for the rest of pregnancy. I thinkit's worth the price.

Uwila · 20/10/2004 16:42

Yes, I agree you should decide before you get the test:
1- what you would do with a bad result

and

2- What is a bad result? Is it 1 in 300 or is it 1 in 5?

I just think it's worth knowing ahead of time for example, okay if my result is 1 in 50 or higher, than I will abort. If it is a bad result you'll be so overwhelmed with the bad news it will be difficult to think clearly.

Dingle · 20/10/2004 16:52

I certainly don't want to alarm or upset anyone, but as a mum of a gorgeous dd who is nearly 3 and has Down Syndrome, I may just confuse the matters.

I chose not to have any additional tests, basically because I felt that I could personally never have terminated my pregnancy, so it didn't really make any difference to us. Having spoken to other mums who have children with SN,(especially DS) many others had further tests which went unnoticed, even babies with DS who had heart problems!!. Others mums had high risk factors and ended up with NT babies!
The only difference with us was the fact that it was obviously a "shock" when dd was born but that doesn't make you love your child any less.
If I had known throughout the pregnancy, all I would have done was read up on the condition, but that would mostly concentrate on the negatives rather than the fact that she is a beautiful little girl,she is mine(well I suppose DH can be included in this too and I am soooo proud of her for who she is.

Sorry, I'll get off my soapbox now, but you need to make a decision that is right for YOU. If something was diagnosed, what would you do? How many mums out there have what they believe to be a NT baby, only to have special needs diagnosed later on.
Again,I hope you make the choice that is right for you. Good luck.

orangina · 20/10/2004 17:04

i don't know if this helps, but for what it's worth, I was offered a nuchal on the NHS here in London, but not a blood test. I did the nuchal, felt happy with what I saw and was told (risk went way down from my age to after the info from the scan was inputted into the computer, plus they saw good soft markers, nasal bone etc), and so didn't feel I had to take it any further. Would have done blood test (privately if necessary) if I was nervous about the nuchal result, and possibly CVS if the bloods weren't great. Agree about the Fetal Med. Centre being v. good indeed, and I think that if you get the top dog himself (Nicolaides? can't remember his name) to do the CVS, then your mc risk is lower than the 1% average that is quoted.... Maybe pay for the nuchal 1st and then see whether you feel you need the bloods? And think seriously about going to FMC if you then feel you should have a CVS....

babster · 20/10/2004 17:18

I think it would be worth the extra £85 for the blood test to get the most accurate result possible. In my area you are only offered the triple test on the NHS - no nuchals - and my result was poor for my age. An 18 week scan which I hoped would reassure me showed a structurally perfect baby... with an echogenic intracardiac focus - opinions on the significance of this are very inconclusive. So I found myself in a quandary about whether to undergo an invasive test, and have decided not to. Sorry - I'm rambling as it's a touchy subject. But I just wish I could have had a more statistically accurate risk factor as I could have done with the guidance.

bunny2 · 20/10/2004 18:36

KIQFTM, I'm with bundle's advice on this, do think carefully about what you would do with a positive result. I am 38 and had a nuchal scan during this pregnancy. My risk was adjusted from 1:128 to 1:44 and I was flabbergasted. I really didnt know what to do but I refused a CVS/amnio due to the miscarriage risk and spent the next 2 months fretting about how ill my baby was. I became absolutely convinced the baby was going to be stillborn with massive heart defects. At 20 weeks a further scan revealed the baby's heart was ok and everything looked well so I finally calmed down and started to enjoy the pregnancy. I wish I had never had the nuchal scan, it caused me so much unnecessary worry.

Original poster
KIQFTM · 20/10/2004 19:47

Thank you all. I think it's because I have to MAKE A DECISION. If this was offered routinely I'd have it and then consider the results. But having to be proactive about it is making it into a bigger issue. I shall ponder on it tonight

OP posts:
WideWebWitch · 20/10/2004 19:50

tbh, kiqfn, if it's so expensive where you are you almost might as well make a day of it and go to the fetal medicine centre in Harley St for 100 IIRC. Have you tried your nearest BUPA hospital, they very often do them?

WideWebWitch · 20/10/2004 19:50

100 quid, that is, the pound sign doesn't work on my keyboard.

bonym · 20/10/2004 21:00

I was charged £140 at BUPA - the scan brought my risk down from 1 in 117 to 1 in 800 and the blood test brought it down again to 1 in 1030 - both were included in the cost.

Uwila · 21/10/2004 09:42

The current cost at the Fetal Medicine Centre is £130. I have one scheduled for mid November, so my price list is quite current. ALthough the one I had there a couple years ago I believe was more like £100.

So I'm not sure cost would be a reason to go to FMC. However, I do think they are the best there is. So if you want to go there because of quality, then I would say it's worth the journey.

NQWWW · 21/10/2004 20:18

BTW if you take a video tape to the FMC they will tape the whole thing for you too. Agree with everyone's positive comments about the place.

WideWebWitch · 21/10/2004 20:44

Sorry, I was wrong abotu the price I expect. That's a good tip about the video tape, my sister didn't know so didn't take one but someone on mumsnet told me and so I do have a tape of her at whatever weeks it was.

helsy · 26/10/2004 10:31

KIQFTM - may be too late for you as I've only just seen this, but Leyton/Leighton Hospital in Crewe do the nuchal scan for 110 and the blood test (which you have to send to Leeds yourself) is another 35 I think. At 39 I had just the nuchal as the Dr couldn't convince me I'd have much more accuracy with the added blood test.

Original poster
KIQFTM · 26/10/2004 11:20

Hi Helsy. Thanks for that. Have managed to find a place that does the scan and blood test for only £160 and is only a mile away from my house. And this was via the Fetal Medicine site. So, much better than traipsing to Leeds or London. Would have gone for Crewe if they didn't do it here after what you've said. Know someone who had it there but she got it for free since she was over 40 - but 'they' didn't advertise that! Grr at the inconsistency of it all.

OP posts:
teabelly · 26/10/2004 12:13

Hi there, I have a question or sorts on the subject of the blood tests included. The nuchal fold test looks at the baby itself, so if the test shows a high % rate that the baby may have DS or other chromosomal abnormalities you can then go on and have a cvs/amnio test to double check if you want. But isn't the blood test on protein's the mother's blood, which the baby doesn't directly affect IYSWIM. If you have blood screening at your hospital anyway between 16-20 weeks they will test for the same things so the blood testing at the NF isn't necessary except to give earlier notification of potential risks (all of which are only risk alerts and amnio/cvs is the only way to be sure) so IMO you could wait for the bloods, and just do the NF for now if the extra costs are so high

Uwila · 26/10/2004 12:34

I'm not sure, but I don't think it's that simple. When you go to FMC they have an equation that takes blood test reslts into account as well as the finding of the scan to come up with your % chance of DS. I don't know exactly what they look at in the blood. But,I think that nuchal alone only provides part of the information, hence resulting in a less accurate prediction of DS. Now none of this is for sure as it is not a diagnostic test. But I do believe the blood work contributes to the accuracy of the test.