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Is it worth having the tricuspid valve & ductus venosus evaluation as part of Downs screening? Available on NHS?

(16 Posts)
Roopachoo Tue 14-Dec-10 21:10:14

I've been reading that the NHS combined test which uses only the nuchal fold, maternal bloods and maternal age to assess the risk for Downs is not as reliable (50% less reliable I think one source said) as using these markers in addition to nasal bone, tricuspid and ductus venosus flow assessment? Any opinions?

Does anyone know if these extra tests are offered at any London NHS hospitals? Am I right in thinking that UCH may offer them? Otherwise I've heard that Professor Nicolaides at The Fetal Medicine Centre comes very highly recommended.

DH's cousin was apparently very low risk (in the thousands), and they and another couple in the same labour ward who were also assessed as low risk, both gave birth to Downs babies. This makes me think the NHS test is not thorough enough. I know it's just a probability in the end- but I'd rather have an accurate as possible number on which to base further decisions about possible diagnostic testing on.

Any feedback on your experiences would be most gratefully received!

NorthernLurker Tue 14-Dec-10 21:16:55

No direct experience but the Fetal Medicine Centre is very much recommended on here. Personally I refused the combined test because dh and I were sure we could continue with a pregnancy whatever so getting a probability of whatever was not an issue for us. You need to be aware that whatever the test you have it isn't telling you something for certain and it may lead you down a path of further testing which again may not give certainty and will not absolutely establish what you should do. In other words I think it's hugely important that you think you know what you'd do with the results BEFORE you start looking at tests and you and dh need to be in agreement of that. Your dh's cousin was given a result on 1 in whatever number - and somebody HAS to be the one. That's the same with all these tests - however it's done. Also - just to point out - her baby is a baby with Downs syndrome - not a 'Downs baby'. They have a chromosomal abnormality - but it doesn't define their whole existance. Good luck with the pregnancy.

Roopachoo Tue 14-Dec-10 21:29:30

Sorry if I have caused any offence with my insensitive shorthand. Thanks NorthernLurker for pointing it out.

bakingtray Tue 14-Dec-10 21:44:42

Had to go private to have the tests as not done on NHS in this area - £240 (nuchal fold, bloods and age). Came back with low probability which was a relief - however as the pregnancy progressed I wished I'd had an amnio - just so I would know for sure.
If you really need to know for definite I'd suggest amnio.
Sorry don't know about the other tests - but they're making advances in medicine all the time!!

thereisalightanditnevergoesout Tue 14-Dec-10 21:47:54

I had the test you mentioned Roopachoo and this time my chance of having a baby with Downs Syndrome was 1 in 4979 - to be honest I was quite shocked that the chance was so low - as I'm 37 and my previous baby born in 2008 when I was almost 35 had a 1 in 300-ish chance (but I hadn't had the nuchal translucency test that time).

I know that any test you have isn't conclusive and in fact you can be told there is a high risk when it turns out that you have a baby born with no chromasomal abnormalities whatsoever.

And then, what about all the other chromosomal abnormalities that aren't tested for and detected?

This is something that I have been thinking about recently - a couple we know have just had a baby who has Downs Syndrome and they didn't know before the baby was born - and I've been trying to think what I would do if this baby (due injust over 2 weeks) has Downs Syndrome. The answer is I don't know. I think I'd rather know about it early on in the pregnancy - not to terminate, but to at least prepare for it.

MainlyMaynie Tue 14-Dec-10 22:00:22

My hospital quotes 90% accuracy for the triple test (I'm waiting for the results at the minute). Either the nuchal or the bloods on their own have 65-75% accuracy. The nasal bone testing isn't 100% accurate either, but done properly should raise the accuracy of your risk score above 90%.

I think it's really important to remember that the testing isn't just for downs, but for other chromosomal abnormalities, some of which are incompatible with life. The tests won't just help how you decide how you would deal with a baby with Downs, but about whether you would want to keep carrying a pregnancy which would end in the death of the foetus before or shortly after birth. I think people forget that when they are judgmental about people choosing to have the tests. Personally I don't know what I will do if I am high risk for downs, but I'm pretty certain I couldn't carry a pregnancy to term if I knew there was no chance of the baby living.

I don't think it's necessary to know what you'd do with the range of possible test results, it's enough to be uncertain. Waiting for the results is horrible, but I would rather know.

Roopachoo Tue 14-Dec-10 22:11:17

Thanks for your replies- I would rather know in advance and have time to prepare rather than worry throughout my pregnancy.

But MainlyMaynie I think you're right in saying that it's not necessary to know what you'd do with the range of possible test results.

thereisalightanditnevergoesout- where did you have your test done?

thereisalightanditnevergoesout Tue 14-Dec-10 22:16:31

Mine was done at the Norfolk and Norwich Hospital. It's standard for mothers over 35 here.

StiffyByng Tue 14-Dec-10 22:23:23

All the things you mention were examined during my NHS scan at King's, which is the research centre run by the same Prof as the FMC. But the only tests that will tell you for certain if the baby definitely has a condition like Down's Syndrome are invasive (CVS, amnio). All the soft markers will do is alert you to a possible problem
and bring down your odds.

ghislaine Tue 14-Dec-10 22:36:44

Roopachoo, to answer your question, UCH's 12 week scan will test all those things you mentioned.

I personally am grateful that they did, because while my nuchal was 1.5mm and there was a nasal bone, the existence of the other soft markers gave me a 1:2 chance of my baby having down syndrome (and elevated odds for T18 and T13, which as MainlyMaynie points out, are more serious chromosomal abnormalities). If I had had bloods and the basic nuchal alone, I would have gained a false impression of my odds, and probably would have been facing a very difficult decision at 20 weeks instead of 12. If you are after a more accurate (although not definite) result, it makes sense to have as many markers as possible tested.

Roopachoo Tue 14-Dec-10 23:34:07

ghislaine, I'm so sorry to hear about your experience.

I will definitely go for the extra markers. It's such a shame that they are not offered more widely across the NHS as they can form the crux of such difficult decisions.

Roopachoo Wed 15-Dec-10 10:23:33

Does anyone know if The Whittington tests for all the above mentioned markers?

I'm having my booking appointment there next week followed by the nuchal scan so might still switch to UCH if the Whit don't offer it.

Bubandbump Wed 15-Dec-10 11:02:19

It's a very personal decision but the nuchal translucency combined with the bloods gives you an initial probability. Our nuchal was initially 4mm so we were then referred for further scans at kings college hospital (also run by prof nicolaides) which included a full ECG and full scan for additional soft markers, prior to making the decision whether we were happy to go ahead with the cvs. I think it very much depends on what basis you are going to determine whether to have invasive testing. The probability of miscarriage through a cvs is deemed to be 2 in 100 and amnio 1 in 100 but it seems fairly widely acknowledged that this can be reduced with the experience of the person performing the procedure.

We had a soft marker and it didn't really adjust the probabilities (but we were 1 in 2 anyway) it was just another factor to consider in whether to have the cvs. There are some people on the antenatal test thread who have been given a probability of around 1 in 34 (mainly from bloods) that have chosen to have a late amnio when the baby could be delivered if there were any problems.

One of the questions you might want to consider is at what probability you would consider having invasive testing compared to the possibility of miscarriage from the procedure. If you had a 1 in 100 probability from nt and bloods of chromosome abnormality and then had a soft marker, would this influence your decision? In some ways as our probability was so high, it made the decision easier but there are lots of people agonise when it is not so clear cut.

Btw our cvs came back clear so they are just indicators, only the invasive testing can give you a definite diagnosis. We now have our fingers crossed for the 20 week scan now.

Roopachoo Wed 15-Dec-10 13:10:03

Thanks for sharing Bubandbump and my goodness, what odds you have overcome. All the best for the rest of your pregnancy.

I honestly wouldn't be able to say at what odds I would go for invasive testing... but I would want to go with an experienced team so either Kings or FMC with Prof Nicolaides.

CheeseChomper Wed 15-Dec-10 13:24:49

Hi Roopachoo,

I had 12 week scan and tests on NHS at Kings, and due to reverse flow in ductous venosus and my blood results, were given odds of Downs as being 1:73- which was a shock considering i'm only 26.

It's great to have these tests available, but because they are so thorough they do tend to pick up on extra soft markers etc that other hospitals might not, which caused me and DP quite a lot of stress deciding what to do when faced with the odds! Almost a case of knowing too much when it might have been less stressful to be blissfully unaware! I was told that the reverse flow in the ductous venosus wouldn't have even been picked up in many other hospitals.

As Bubandbump said, the only way of knowing for certain is to have a cvs or amnio. We decided to have a cvs to know for sure and to prepare ourselves if out little one did have Downs Syndrome- fortunately he doesn't. What was good is that when you have the cvs they also test for other chromosonal abnormalities and cystic fibrosis. If it reassures you at all, the consultant we saw at Kings said that they haven't lost a baby yet as a direct result of a CVS- the guys there are extremely experienced, possibly more so compared to other hospitals due to it being a top-class research facility. Other people may disagree though, although that's my opinion!

Roopachoo Wed 15-Dec-10 14:01:13

Glad to hear your news CheeseChomper.

As far as too much info is concerned I think once you opt for any kind of screening it's better to have as accurate as possible odds otherwise what is the point? At least then armed with all the relevant info you can make well-informed, albeit difficult, decisions.

Very comforting to hear about the CVS loss rate at Kings.

Thanks for all your replies guys.

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