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Pregnancy

triple test and Fetal Medical Centre

45 replies

geranium · 12/12/2005 10:34

I know this has been raised before but I would be grateful for help in reviewing my options. My triple test result has come back as 1 in 780 (for Down's or Spina Bifida). That seems very high to me since last time the probability was 1 in 7700 (I'm 36 now and was 33 last time). I would like to carry out further tests and would be grateful if I could just be reminded of the options.

I am starting week 18 today. Can I still have a nuchal fold test and, if so, where in London do you go for a private test (hospital does not offer this). Also, would nuchal fold test tell me much more.

If I go for an amnio, it sounds like the London Fetal Medical Centre (?) is more used to carry these out than the hospital is likely to be and with a better chance of not harming the baby - is that true and, if so, should i ask for a particular doctor at the FMC or would any do? How quickly do I need to have this done?

Any other options at this stage (other than hope and pray).

Many thanks in advance for your help. Sorry to be asking again such a common question. I have tried to read the previous threads on this but somehow when it happens to you it rather focuses the mind!

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throckenholt · 12/12/2005 10:38

that is low for that age I think - if I recall at aroung 34 it should be about 1/250ish.

You are too late for the nuchal fold.

If I were you I would leave it until after you have the detailed scan at 20 weeks. The risks of miscarriage as a result of amnio are higher than the odds you have of downs.

crumpet · 12/12/2005 10:40

I think you may be too late for a nuchal fold test - I had one at the fetal medical centre at 13 weeks when dates were not celar and they told me then that if the dating scan showed that I was further on than 13 weeks they would not be able to do the nuchal fold test.

I had a result of one in 80 so made the decision to have a CVS, which was with Professor Nikolaides, one of the leaders in the field. Don't know whether he carries out amnios I'm afraid, but the centre will be able to help you and will be happy to discuss the (for want of a better word) "success" rate of those who do carry outthe tests.

HTH

crumpet · 12/12/2005 10:41

By the way, my tests came out clear, which was good, as they did for my dd, and the risk for her was 1 in 62. As a percentage, your risk is in fact very low, although the difference with your rate first time round must make it feel as if it has increased a lot

geranium · 12/12/2005 10:45

crumpet, what is CVS again (and how late can you have it?!)? An early, first trimester test?

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throckenholt · 12/12/2005 10:48

chorionic villus sample - I think - they take some fluid from the membrane I think - pretty much the same as amnio but done earlier - I think by week 18 you are restricted to amnio (but could be wrong). Talk to you midwife or consultant.

hub2dee · 12/12/2005 11:10

hi geranium, I know your odds compared to your pg three years ago seem high, but really they are still very very favourable indeed.

You could always ask how your blood results have skewed the outcome chance based in your age IYSWIM... it sounds like they have further reduced risk-by-age which is brilliant.

The 1in 7700... was that from a triple test ?

From what I remember reading up on all this the triple was really quite a good test (in terms of statistical reliability IYSWIM).

The nuchal is up to 13+6, and invasive testing (which carries a 1in 100 typical risk) is usually only indicated if your risk is about 1 in 300 (or more than twice your existing estimated risk IYSWIM).

HTH

PS - The Fetal Medicine Centre is a world-leading facility, Prof. Nikolaides is right up there.

hub2dee · 12/12/2005 11:11

BTW, all the info you need is here at the FMC's web site.

geranium · 12/12/2005 11:16

thank you. the previous result was also from the triple test. I think age related risk would ne 1 in 300 as far as I could gather from the midwife (not very clear about how the risk is calculated).

I'm thinking of trying to get an early anomaly scan. Would 17 weeks be too early to be meaningful? If not, that might be an intermediate option before deciding whether to have an amnio.

I just wish I knew more about the test so I could put the results in context. As it is, it is just so hard not to compare to last time.

If you've had experience of the FMC do you know whether this Prof. carry out scans or does he just do amnios? and what's he like? is he usually available for a chat about an amnio eg after we know the results of the scan and are wondering what to do next or is he busily rushing about everywhere and can't be pinned down (as some hospital consultants I know!)?

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geranium · 12/12/2005 11:17

ps how do you mean "further reduced risk by age"? sorry, feeling very ignorant.

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GhostofChristmasNatt · 12/12/2005 11:24

Geranium, I'm 37 and was pretty pleased to get something in the 500s after a triple test at the FMC. I wouldn't worry about your result and I reckon an amino would vbe over the top for your odds...

crumpet · 12/12/2005 11:50

Hi geranium, sorry, just seen your question (and that it's been answered!), but for me the decision to go ahead with the CVS was based on the risk being far higher that there could be an anomally than the risk of a miscarriage.

In your position where the situation is reversed, you should really look carefully at the stats. Even the best stats (I think - but do check) show a 1 in 300 risk of a miscarriage after an invasive test. This is more than twice as high your current risk that there could be a problem.

If your current risk level is age appropriate or better, then it is probably unlikely that the staff at the centre would recommend that you have an invasive test. Doesn't give you the certainty of knowing, I admit, but there may be comfort in knowing you are in the "normal" risk category?

Just did a quick google and came up with this site (caveat - I have no idea if it is any good), which suggests that for your age, your curent risk is getting on for 3 times lower than the average: www.wolfson.qmul.ac.uk/epm/screening/calcrisk.shtml

PeachyPlumFairy · 12/12/2005 12:18

Hi Geranium.

Just wanted to give you sympathies really. remember DS3 getting a i / 35 result (I was 29 so NOT age appropriate) and facing all this, it was extrememly hard on both DH and I and we remember being very confused and at time distraut (SP). On one hand we had the MW booking us Amnio appts without being asked, on the other MIL ordering us to 'have it aborted' immediately, and on the other again (3 hands? hmmm) having nursed Downs Syndrome adolescents, I felt very much that I could cope with whatever the outcome was.

In the end luck was smiling, we actually did a runner from the Amnio suite after decicing it was nobody elses business and we would love our baby whatever, and DS3 was born fine. HOWEVER everybody is different on this question, so my only advice is to go with your heart and give yourselves a break as you go through a difficult time.

Have to say though, I think your result is pretty low risk actually.

geranium · 12/12/2005 12:24

thank you all. I will have a look at that site. the risks of miscarriage do look very high but the uncertainty of not knowing for sure is hard. The rate just seems really high and I know I need to get it into proportion. Also, if I didn't have another child I probably wouldn't be bothered so much but having one whose interests have to be considered as well I want to have as good an idea of what's coming as anyone ever can.

How much clarity would the anomaly scan give? would it pick up Downs? presumaby not, but might eliminate/find problem markers?

Does anyone know the "success" rate of amnios at the Fetal Medicine Centre?

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GhostofChristmasNatt · 12/12/2005 12:30

Nikolaides himself has a very low rate of miscarriage with the amnios (I think the figure might be in the FMS literature). Your odds do seem very low geranium and there is a point at which the stats don't mean much any more (your odds can be 1/10,000 and you can be the 1). I know there are people on here who had a Downs baby with low odds and vice versa. Everyone including me was smiling when I got my 1/ 500-odd result at the FMC - your odds really are pretty good for your age..

geranium · 12/12/2005 12:35

Thank you Ghost of Christmas. How hard it is to look at these things calmly. I think I might try and see if I can get an early anomaly scan so that I feel I am doing something and then try and take it from there

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GhostofChristmasNatt · 12/12/2005 12:38

I know how you feel, geranium - I was all over the place after having a nuchal scan without the extra bits (1/180 -something) and then delighted after I had the FMC tests. an early anomoly scan sounds like a good idea.

Imafairygetmeoutofhere · 12/12/2005 13:07

Geranium,

I went for the triple test at the FMC and still came back as high risk, and so had CVS. I had someone other than Nikolaides and he was very nice and professional. I don't know what their m/c rates are, but I was told that after 12 weeks your risk of miscarriage goes down from 25% to .5% as standard, and that CVS and AMNIO increase that to 1%, both during the procedure and for 5 or so days after.
Don't know if that helps at all, just wanted to say good luck and hope it all works out.

x

pinkystinky · 12/12/2005 13:18

Ive got the added worry of having to pay out £145 to have the nuchal scan done privately( as the hospital wont do it at the 12 week scan!) which is ridiculous!! If i waited till i got the results of the serum tests and anything did show up, i wouldnt be happy!

geranium · 12/12/2005 13:20

Mrs Fairy, how come you had a triple test and then a CVS? I thought a triple test was so much later than the CVS that you could only really have one or the other - ie nuchal and then CVS or a triple later on at 16 weeks?

I have to say I'm doing a lot of "things I wish I had known about 10 weeks ago" but can't be helped.

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geranium · 12/12/2005 13:22

pinky, I wish I still had the option of having the nucal! our hospital doesn't do it but I would happily pay out if it would give more certainty.

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pinkystinky · 12/12/2005 13:27

Its not fair , never had this problem when we lived in Surrey! They say the hospital cant AFFORD IT!
Something as important as that! We cant afford it , but ive told dh i will make sure ive got the money for it!
Oh we have also got to pay £50 if we want to know the sex of our baby! What is this world coming too!!??

geranium · 12/12/2005 14:23

I know. I wish they would standardize the tests. I've spoken to a couple of friends, been reassured by their results and then realised they have had completely different tests to me.

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hub2dee · 12/12/2005 15:18

Thing is though, geranium, despite the wide variety of different tests, they are all attempting to essentially measure the same thing: the risk of you having a baby with a chromosomal abnormality (or some other specific health problem). Some tests are more suited early on in the pregnancy (nuchal), some add additional variables (combined), some for later in the pg (triple)... all these tests though, can only express the result as a statistical risk based on studies of large numbers of people, giving you a 1 in x chance IYSWIM. FWIW, your 'score' would probably be regarded as 'excellent'. The amnio and cvs are the only ways to have certainty (as opposed to likelihood) wrt the health of the fetus.

If you feel the need to be assured, discuss options for an early anomaly scan, it sounds like this would really help you. IIRC 18 weeks is the earliest you can do this.

If you feel the need for certainty, then the so-called 'invasive' procedures would give you definitive answers. (They don't always work first time IIRC due to fetal positioning), and they carry a small risk of spontaneous abortion. Certainly the senior experts @ the FMC are likely to have 'better than average' results wrt these procedures.

HTH

geranium · 12/12/2005 15:38

Hub2dee, do you mean that the amnio doesn't always give results first time because of fetal position? if so, that's well worth knowing. I don't think I could go through with it twice. In fact, I'm wondering whether I can go through with it at all.

I've rung the Fetal Medicine Centre and they've given me an appointment for Wednesday for an anomaly scan. I have told them that I will only be 17+2 then so I hope they have taken that fact into consideration. The person I spoke to kept going on about my having a consultation for an amnio despite my saying that I wanted a scan before doing anything further so hope we are all on the same wave length!

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geranium · 12/12/2005 15:38

Hub2dee, do you mean that the amnio doesn't always give results first time because of fetal position? if so, that's well worth knowing. I don't think I could go through with it twice. In fact, I'm wondering whether I can go through with it at all.

I've rung the Fetal Medicine Centre and they've given me an appointment for Wednesday for an anomaly scan. I have told them that I will only be 17+2 then so I hope they have taken that fact into consideration. The person I spoke to kept going on about my having a consultation for an amnio despite my saying that I wanted a scan before doing anything further so hope we are all on the same wave length!

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