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any had a combined biochemistry and nuchal translucency screen?

(25 Posts)
JayTree Fri 09-May-03 08:54:23

Just a quick question - I have just been given a flyer about a local Bupa hopsital offering this combined screening test and it looks really interesting. The problem is that I think it will be costly (around £100) and we are not exactly rolling in it at the moment and the other issue is that the test needs to be done before start of week 14 - for me that means before next Saturday. Not a lot of time to consider it and possibly go ahead with it.
The leaflet obviously goes on about how much of a good idea it is - if anyone out there has had this test, did you find it useful? Did it add or reduce your stress levels ? The fact that it is only about 90% accurate still leaves room for concern even if the test comes up negative, does this make it pointless if the exercise is to inform and reduce concerns? If you have any thoughts please help as I could do with some opinions to consider.
(I have done a few searches on the internet but all are either high brow medical journal comments or by private hospitals selling the treatment and going on about how great it is.)
Thanks in advance.

Marina Fri 09-May-03 10:58:04

The only thing I can contribute here JayTree is that this test was developed at Barts and is now thought to be the best available combination for detecting chromosomal and other disorders early on. Best as in detection rates vs no risk of miscarriage (obviously CVS/amnio are 100% accurate but put the pregnancy at some risk). I think ultimately the idea is that it should be available everywhere on the NHS, but as lots of us here know, you still can't get a "bog-standard" nuchal on the NHS in many areas.
I think if it had been available to me I'd have had it, as it would have given extra reassurance on top of the nuchal. I never wanted CVS/amnio because of the miscarriage risk.
Will you automatically get a free nuchal on the NHS - because you can pay nearly £100 to have that alone done privately, so from that perspective, £100 for this "improved" test is quite good value I suppose. HTH.

musica Fri 09-May-03 15:47:58

I think where we are the combined screening test is about £180, and that is through BUPA, so I would check the cost before you sign up for anything! I think it can be reassuring, but it still only gives you a level of risk - it isn't a yes/no.

KeepingMum Fri 09-May-03 16:03:03

Jaytree, I had this combined test done at a private clinic in Herts (I'm not sure where you live). I was only going to be offered blood tests at the hospital and they were at 16 weeks which I thought was quite late (if anything came up). I wanted to know my 'risk' earlier rather than later. I had also left it quite late and phoned on a Saturday and had appointment on Sunday and results by Monday, so the stress of waiting for the results was less than the hospital blood tests I had had first time, (we'll only call you if there is a problem). Although nothing is guaraneteed my mind is a little more at rest knowing that my 'odds' of Down's have been reduced from those based on my age alone. If you are close to St Alban's are can give you the number of the clinic. I think the guy was trained at the King's unit (Kypriades) and his results are audited by them.

grommit Fri 09-May-03 18:07:49

I am having a Nuchal scn in 2 weeks time at that clinic in St Albans. I am very nervous....

SofiaAmes Fri 09-May-03 23:27:24

JayTree as Marina said it sounds like the Bart's (hospital in london) test. They have a very good explanation of it all on their website. I don' t know the address, but I got to it through links on babycentre.com (back when i was foolish enough to think there was life outside mumsnet). How old are you? I don't think it's much use if you are too young. It wasn't offered at my nhs hospital so I had just the nuchal scan and then although i had had a good result had an amnio anyway.

WideWebWitch Fri 09-May-03 23:35:11

Jaytree, I had mine today at 12 weeks and I'd say it's worth it in that my risk of downs was 1/300 based on my age (36) and has now been given as 1/1500 based on the triple blood test and a nuchal scan. The scan measures the neck and looks at the nose since these are indicators for downs. (sorry, I haven't put that very well but I expect your searches explained it better) and we paid £130 in London. I'm outraged that it isn't routinely offered on the NHS but that's another whole discussion. We really, really struggled to find the money too but actually today I am feeling reassured and so it was worth it. I did have to think about where to go since it appears that not all centres are the same. Do a mumsnet search on nuchal fold and you'll find the discussion and the advice I was given. HTH.

JayTree Sat 10-May-03 08:29:49

Thanks for the replies - I have done a bit more local research and have found out that it is definitely only available privately and that will cost a minimum of £179!! Not only is it really expensive but due to my dates they only had a couple of appointments available where they could "squeeze me in" - for that price I dont want to be squeezed anywhere, I would want a nice cup of tea and time taken explaining everything really clearly to me..... Seriously though, we discussed it at length and have decided that if it were cheaper we could stretch to it as it would be a great way to provide extra reassurance etc. However, as I am still under 40, have one healthy child and no history of chromosone/genetic disorders, we have decided that we cannot justify the expense. It is so hard making decisions like this one - especially when I am pretty irrational and hormal at the moment anyway. I had set my heart on it after further reading. After a rocky start to the pregnancy and my constant obsession that there is something wrong, it would have been comforting to have had a low risk medically diagnosed.
It has made me reconsider my feelings about private health - I always felt that if people could afford alternative health care then why shouldnt they be allowed to spend their money however they chose. After all, the NHS is still there for everyone if they choose/need it - suddenly feels a bit different now that it is a choice of no test or pay up. In my case I suppose I should just be glad that it is for a relatively unnecessary test and not essential.
Good luck to all those of you having your scans soon - hope they help to put your mind at rest and result in you being able to relax a bit more and enjoy your pregnancies - let us know how you get on.
Thanks again for your responses.

WideWebWitch Sat 10-May-03 11:34:14

Jaytree, it may be too late or may not help but the Fetal Medicine Centre in Harley St charge £130. They told me on the phone that they don't turn anyone away so I don't think it'll be squeezing you in. Actually I felt guilty being there so IKWYM about that. It seems that paying (which I've never done before but in this case it is pay or don't get it and like Bells said, there is no facility to offer the money to the NHS to carry it out for you) gets you: very polite nice staff, modern beautifully designed waiting & treatment rooms, tasteful sculptures and paintings, Vivaldi as background music (isn't it always Vivaldi?), Molton Brown soap and handcream in the loos along with individual towels like an expensive hotel, current magazines, being seen on time, immediate results. So I can completely see why people are seduced by private health, what a different experience to anything in the NHS. I know this is slightly off topic but I thought it was interesting. Maybe I'll start a thread like the education one, i.e what should we *do* about the health service, rather than private vs state. <sigh>

woozle Sat 10-May-03 13:15:31

WWW - pls start a thread re what we should "do" about the NHS.
I work in it and we need all the help we can to get things right!

Gilli Sat 10-May-03 18:48:59

Everyone - it's worth knowing that the Fetal Medecine Centre in Harley Street is the charity which is run by Professor Nicoliades, with profits and research going to help the Harris Birthright Centre which I understand is the NHS equivalent at Kings', also run by the Professor. I agree, it is very comfortable, but morally I was comfortable with going there too, IYKWIM

eidsvold Sat 10-May-03 19:22:54

There is so much I want to say in reply to this - it can be incredibly stressful these tests and worrying about the outcome

BUT it is not the end of the world if you have a child with Down syndrome.. you just discover a whole new amazing world ( spoken by a mother who had a pretty good idea her daughter would be beorn with down syndrome due to serious heart defect picked up at 20 weeks in utero) i refused an amnio as it would not have changed the outcome - our baby was going to be born. My daughter is amazing and beautiful and incredible with a reserve of strength and determination that would put anyone to shame. She is also the most amazing thing to have happened to my husband and I... our life is so much richer for having her as are the lives of a number of other people.

Marina Sat 10-May-03 20:06:42

Eidsvold, I agree that having these tests can be tremendously stressful.
We did not have a CVS second time round despite being offered it quite forcefully by a doctor from Kings, because we knew we would not terminate on the basis of Downs, so why risk the pregnancy. But losing that baby at 22 weeks, and researching all the causes of late miscarriage/stillbirth, made me more aware that CVS and amnio are used to diagnose other abnormalities/congenital syndromes in the womb that mean the baby faces certain death before or just after birth. I'm thinking of Edwards and Pataus syndromes here, these are the commonest, but there are others too. Now on my third pregnancy, we still declined CVS after an acceptable nuchal result, but we asked for an extra rigorous anomaly scan. And if that had shown signs of Edwards/Pataus, I might well have risked an amnio to confirm the diagnosis. Brave people carry babies they know cannot live to term...after what happened to me last time, I couldn't do that.
Because of my age there is a higher than average risk our baby might be born with Downs. Like you, I am not remotely bothered by that prospect. But on balance I think having these tests generally available to all mothers is a good thing, because then everyone can choose whether to have the tests or not. I think it is very wrong that a safe, non-invasive test like the new Barts or the ordinary nuchal is available to only a percentage of woman round the UK.

JayTree Sat 10-May-03 22:06:21

wickedwaterwitch - thanks for the tip about Harley street - just too far away for us with next weeks mad schedule, and still a bit pricey for us to be honest.
I really take on board Marina and Eidsvold’s comments about outcome and life decisions. With our first baby we decided that we would do all the NHS tests available - to prepare us for any possible problems in the full knowledge that we would not terminate unless any complications directly threatened my own life. Second time around I must put my hands up in the air and admit that it no longer seems so simple. My daughter needs so much attention and time that it would not be so clear cut this time if there were problems as we would need to consider her needs as part of the whole family needs. I am not saying that we would definitely terminate if a problem such as Downs was identified, just that we would consider our options with a lot more soul searching first. I can’t really put into words how I feel about this as my feelings are so mixed and half formed anyway - I just know that it doesnt seem so clear cut this time round. Not for one moment would I wish to judge others for their responses to this type of decision and the soul searching that inevitably goes on with a topic like this - I just think that we should be able to have access to these tests at the earliest opportunity so that we can make these difficult (for some of us) decisions through informed choice. Money should not be the deciding factor when we are dealing with such important decisions and considerations

monkey Sun 11-May-03 12:40:02

The reason I decided not to have the nuchal scan in the end - well, there are lots I suppose, but ultimately, we would keep the baby no matter what; I didn't want an amnio or CVS because of the risk, so a nuchal scan would only give at best some reassurrance, but may give a very unclear or 'poor' result, even if there was nothing wrong, and thus give months of needless anxiety.

Plus it only has a 90% success rate, which is obviously high, but that's still 10% of women given a clear result when in fact, there WAS a problem.

What concerns me about the tests is that so many women, usually 'strongly encouraged' by medical staff terminate pregnancies where problems have been diagnosed when in fact, they weren't that big a deal anyway, eg cleft palate. I also read one woman going on about her 'miracle baby' as she was due to have a termination following bad antenatal test result, and she couldn't turn up due to her partner having serious accident that very day, she was then too late & had to carry the baby to term. When it was born the only thing wrong was it was missing a couple of fingers, or something very minor along those lines. It really worries & upsets me, tbh, how many babies are terminated each year, not to mention those lost in the 1 - 2 % miscarriage risk. Sorry if I've upset or offended anyone, but actually I think we've gone too far in the search for a perfect race with no babies with any problems. That said, I do still feel nervous that I have rejected the tests, and now have to 'wait & see'.

Plus, my feelings on antenatal test in general aside, I also agree with www that it is outrageous that tests are offered on the NHS in some areas & not others, that the quality & price varies so much that stress, pregnant & anxious women feel forced to travel hundreds of miles & pay a lot of money to get something that down the road other women get for free. It's just not right.

WideWebWitch Sun 11-May-03 12:56:32

Point taken eidsvold, I didn't want to offend anyone by talking about having testing and I'm sure your daughter is lovely. It was right *for me* to test though since I know I would terminate in the case of downs. I don't want to argue with anyone about this, this is just my view. I completely agree with Marina on the general subject of testing and availability.

2under2 Sun 11-May-03 14:16:32

well, it's all a question of money. A baby with DS or cleft palate or heart problems isn't cheap for the NHS - it's cheaper to offer a termination. For all those of you who think I'm just paranoid or a conspiracy theorist, you might like to look at http://www.ncchta.org/execsumm/summ201.htm - which is an NHS document comparing the cost of antenatal screening with the saving of each 'Down's Syndrome birth avoided'. I have a friend who is a midwife. They have been told to encourage women to undergo antenatal screening as a money-saving exercise.
I also recently read (can't remember where, sorry) that from a sample of seven western countries the UK provides the most negative and biased material for parents-to-be on Down's syndrome. I wonder how many people who terminate for a disorder actually have the sense to talk to affected parents first, rather than relying on outdated, second-hand information provided by others?

Jimjams Sun 11-May-03 18:50:18

I had nuchal (on NHS at Kings) becuase I wanted to know in advance if I had a baby with down's so the birth could be happy rather than a shock. I personally would never terminate for downs. however I have been horrified to hear from a friend who had a positive amnio for downs that she had to keep cancelling the operating theatre. She was out under enormous pressure to terminate- which personally I think is dispicable. So make sure you know why you are having the test done and what you would do if the test was positive.

I also know of quite few false alarms with nuchal which has caused enormous stress. On the other hand I do have 2 friends who's baby's problems were picked up on the nuchal and they were able to prepare themselves before the birth (after some stressfull weeks). Be aware it doesn't just pick up Down's - it picks up other chromosomal abnormalities such as Turner's syndrome.

eidsvold Sun 11-May-03 19:28:11

I had a fetal cardiac scan at kings and the cardiologist informed us that the heart defect dd had was primarily found in children with down syndrome, then offered us an amnio... I refused - expecting to have to fight not to have one... having read all the statistics - very frightening if you want to read nos regarding amnios, cvs and terminations ( prof. niccolaides (?)) He did not push me and simply asked if having an amnio would change the outcome when we said no - he told us not to have one.

Yet the number of people who asked after dd was born if we had had a number of tests such as amnio, quadruple blood test ( refused - 48% accuracy - forget it), nuchal fold scan etc - particularly medical staff was amazing.

leese Sun 11-May-03 20:03:29

2under2 - not sure where your friend is a midwife, but find the idea that she offers AN screening as a money saving exercise difficult to swallow. I can absolutely, categorically say that AN screening, in all the areas I have ever worked, is discussed thoroughly, with no bias or emphasis on testing - rather it is discouraged unless the woman and her partner have fully discussed the implications. It is not to be taken lightly, and certainly not in order to save the NHS money.
I'm just aware of the heart rending job my colleagues do on a daily basis, counselling couples re:amnio/CVS - how they do it I will never know. There is absolutely no emphasis on saving the NHS money.

2under2 Sun 11-May-03 20:58:14

leese she works in west yorkshire - not as a community midwife anymore but some sort of pre/postnatal health coordinator. she has the same feelings as you and was pretty offended by it all.

ThomCat Mon 12-May-03 13:50:43

I have to say i completley agree with what 2under2 has said about talking to 'affected' parents first rather than just listening to a GP. If any parents worried about their child being born with Down's and don't know what to do Charlotte and I would be more than happy to meet you and give you an idea of what it could be like for you. Charlotte is 100% healthy and 110% happy and touches everyones lives in a way that i've never seen with any of my friends children and I've had it said to me by all those parents as well. I know I'm bound to say so but i defy anyone who meets not to agree that she's perfect in every way. reffering to a post by 2iunder2 ona nother thread children regarded as normal can all turn out to have 'special needs' at any point in their lives. My 22 year old step sister is addicted to a class A drug and self harms and my other sister (29) has had terrible OCD (Obsessive Compulsive Disorder) since she was 13 and can't put the kettle on / leave the house / use the phone tec etc. There's no tests available to detect those things won't happen.

Jimjams Mon 12-May-03 14:15:26

I agree talking to affected parents should be a priority. The misconceptions surrounding ds1's disability constantly amaze me. It would be awful to say make friends with someone with a down's child following a termination and realise that you may have made a different decison given all the facts.

One thing that happened to a friend when having a nuchal was that a physical problem was discovered. She was then given the worst case scenario that it could mean genetic problems. She was put under enormous pressure to have an amnio- she refused. When her ds1 was born he had the physical problem- but no genetic problems- although she had spent the entire pregnancy worrying.

if you go for nuchal you have to be aware of what you might do given any number of results.

leese Mon 12-May-03 18:47:41

Agree so much with the posts on here, 2under2 - I feel for your friend and all the women under the care of that Health Authority - what a dreadful scenario.
Personally, I find that when the testing is discussed, lots of women just say 'Oh, I'll have that', without any real thought - to them, it's a test that is is offered, and they want everything going, if you see what I mean. we have lengthened our initial ante-natal 'booking-in' appointment (when you first go and see the midwife) to 1.5 hrs now, as we were finding an hr was not sufficient to go thru everything - mainly ante natal screening. even then, we cannot hope to cover absolutely everything - it is so reliant on women doing some reading themselves, and deciding what THEY want to do - and of course, we cannot hope everyone comes armed with some information.
When women then get a raised AFP result, or a raised Nuchal risk, they are naturally shocked - but lots had not even considered the implications of this, and have no clue as to what they want to do next -?amnio ?nothing. If your plan would be to do nothing with a rasied risk result, why bother putting yourself thru the bloood/nuchal screen, to spend the rest of your pregnancy with a high risk result worrying you. This is by no means suggesting that everyone should have anmnios - just that women need to think about the tests on offer, and if they will be of any use to them. I always take great pains to explain that all these initial tests are merely screening tests, and are not foolproof - your risk result may be great at 1:5000 - but you could be that one.

Jimjams Mon 12-May-03 18:59:12

Good post leese. I went into first nuchal without thinking. By my second I knew that I wanted an early scan to show up any problems that would be incompatible with life (eg anencephaly), but I also knew that I wouldn't have an amnio to check for things like Down's- so I did run the risk of worrying all pregnancy. And of course even with those decision there are still grey areas (there' are even with amnios- what about mosaics- some cells normal, some abnormal if they're in the placenta means nothing, if they;re in the baby could do)

it is hard isn;t it

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