TRIPLE TEST HIGH RESULT - LOTS OF QUESTIONS PLEASE!

[Elvina]

Hi

I am 42 and expecting my 3rd child in July. I had my other 2 at 36 and 39 and each time had a pretty good triple test result for my age, about 10 years lower each time. This time however my result has come back as 1 in 30 which is a little higher than my age average so this has thrown me a bit. I am too far along apparently for a nuchal fold scan and dont want to have an amnio because of the risk of miscarriage and I have heard that it can give quite a lot of false positives as well as not being able to tell you how severe the baby is if it does have downs.

I have heard that the triple test can be effected by things such as diet and your health on the day and was wondering if anyone knew anymore about this please?

Also apparently in downs babies the AFT and Oestirol are usually low, mine is apparently just a little bit below average and usually the HCG is high however mine is apparently average where it would normally be raised with age. I dont really know quite what to make from this and wonder if anyone can help me understand this.

Thanks for your time.

Elvina

ask for an internal scan, they can mesure, back of neck

Yes the nose bone evidence reduces risk by 50% but this depends how far on you are as you said too late for nuchal....when I had my nuchal this time they checked and i am unsure here but - bloodflow through one of the main ateries to the stomach as this is a good indicator but she said as yet not part of test so they only do it for their own records and do not add to standard results........you should go back and express your concerns...

Elvina an amnio or CVS is the only way to know for sure if your baby has Down?s syndrome, if this is your main concern.
If it gives you a positive result as far as I know that is 100% reliable. You?re right tho that even that will not tell you anything about the level of difficulty for your baby - you either have DS or not, but if you do, the degree to which it affects you varies hugely.
If you need to know for definite and would terminate with a positive result, then an amnio is the best option I would say. If you would not terminate then I wouldn?t advise it.

Hi

Thanks for the replies.

I have heard about the nose bone test but no one does it round here and anyway I think that I am too far along.

I have my anomaly scan in 10 days and am going to ask them to look for the downs markers carefully as I believe that there are a few.

We wouldnt want to terminate unless the baby was very poorly and was going to have a very poor quality of life hence another reason that we are against the amnio.

Would love to hear from anyone else with info about what effects the the triple test and levels.

Thanks again

Elvina

Hi there
I had my 2nd child at 40 and had a nuchal scan which resulted in a 1 in 2 chance of having a child with DS. A complete shock at the time - but I went ahead and had the CVS even though I had initially been against it. The odds seemed so stacked against us that it seemed better to go ahead and do the test. We also had a detailed scan at the time to look for soft markers and to check the nose bone (which was there). The scan was fine and then when we got the results of the CVS we were told that she didn't have any chromosomal abnormalities. However, the 20 weeks scan was extremely detailed (at our request) to check for soft markers etc. The happy ending is that despite the odds, our daughter was born with no abnormalitlies and is now a happy bright 2 year old. I am not sure that this helps at all but i just wanted to show that despite everything there is often a happy outcome. I am personally extremely glad that we had the CVS and for us this was the right decision... Good luck with everything.

Whoever conducted your triple test (your information leaflets will give your the details) should be available to talk to you about the results and all your options. Have you spoken to them?

Can I also just add that having a child with Down's Syndrome may also be a 'happy outcome'....

I was never in the position to find out that the baby I was carrying had DS. But personally it wouldn't have made any difference in the end. It might have made the pregnancy harder as unfortunatley a lot of the literature about DS is all about the negatives. But at the end of the day I have a happy, healthy, wonderful little girl.

I won't deny that looking after Amelia is hard....but isn't looking after any child!

If you have any questions, please don't hesitate to ask. Just shout on here or CAT me.

Just a taster of what life is like with Amelia, scroll down to "my little darlings" folder.

here

Just to back up what Clary says- if you did want to go for an amnio you should know that it can't give false positives, it's a definitive test unlike the triple test. I don't know of evidence that the triple test can be affected by diet but I would bet it can vary on a daily basis to some extent. It sounds as though you don't want an amnio though, so have enjoy looking at the pics of Dingle's gorgeous dd

I had a quadruple test during both pregnancies and had a higher risk than normal for Edwards syndrome which is incompatible with life (though risk for DS and neural tube defects was low) and opted for an amnio (can't remember which of the hormones was high, have a feeling it might have been hcg) which was fine and I continued the pregnancy and now have a nearly 3 yr old dd2. I wouldn't have done it any differently. sorry I can't help you regards diet etc and hormone levels.

hi

My ds3 was high risk from the double test so I have some idea how you feel, although I am a little younger (I was 29). We decided not to do the amnio as we decided we could live (and love) with a downs child, but not with ourselves if the amnio caused us to lose a child. We'd have liked a definitive yay or nay to prepare ourselves, but for ourselves it wasn't worth the risk. Personal decision. DS3 was / is fine and is now 2.5.

There are groups out there giving reputable advice and info here ) advice on antenatal tets , and I was very reassured after reading the Downs info leaflet entitled 'Your child Has Down Syndrome' the testing unit kindly (??) sent me after refusing an amnio. The MW did put me under pressure to have an amnio but they gave up in the end. I did have a detailed scan, but that was only because the sonograoher arrnaged it, Consultant refused it.

I may have this wrong but my fiend had a high test result and she had twins...

Hi Elvina
When pregnant with ds1 (now 4) I had the triple test which came back with a result of 1 in 10 for downs - I was 32. I had the amnio not because we would have had a termination but because I wanted to know if our baby was going to have downs in order to prepare for this. In the event ds does not have downs but I was angry about the triple test which I think can be very unreliable - high results lead to healthy babies and low results sometimes lead to babies with downs. With dd (born 2 years ago almost) and with this pregnancy (no. 3 is due in March) I haven't had any kind of triple test or nuchal scan (even though I am now 37) as in any case I would not have an amnio or a termination, and it FEELS GREAT to say no to those tests which I think cause more heartache than they are worth.
I know this doesn't really answer your other questions but just to say that I have been there and it was all "fine".

I had some spotting with my preg and midwife said that that meant that the test result might come back as high risk. Something to do with hormones I guess (hcg maybe). It did come back as 'high' risk but only 1 in 180, I think. Have you had any spotting?

Hi Newkid

Thanks for that - yes I did have spotting for over a week early on. I hadnt heard about that possibly effecting the test.

Its so weird how many things appear to be able to effect this test and yet no one bothers to mention them to you when you have the test or when you get the result, I have looked on the net and cant seem to be able to find out much about it either.

Many thanks

Elvina

Elvina, first - sympathes for you, you must be worried. What I heard about the triple test was that it is very fiddly, and the odds that they calculate can be a bit all over the place depending on several factors. Mine was 1 in 100 and I spoke to many medical professionals about this. I had an amnio, and my consultant told me that there is a theoretical risk of miscarriage of 1%, but this is also dependant on the person performing the procedure. When done correctly, it is a perfectly safe procedure and will give you a definite answer.

If you are near London and would consider having id done privately, the expert is Dr Nikolaides at Fetal Medicine Centre - he can do them with his eyes closed I hear!

Hi Elvina

You would get a definite result from the amnio (for certain conditions- they can't pick up everything, although they would pick up DS). However even the result did come back as positive for Down's syndrome it wouldn't tell you how severe the condition would be. Down's syndrome is (like many condtions) a spectrum and there is no way of prediciting which individuals will be high functioning and which not.

A detailed (I think they call it level 3) scan sounds sensible. I have also heard that spotting can affect the results.

Good luck.

Hi Elvina - I can completely relate to what you are going through as I had exactly the same thing - triple test result with a 1 in 30 chance of a Down's. I was lucky enough to be able to go and see the aforementioned Dr Nikoliades in London who scanned me for 45 mins - the most thorough scan I have ever had. He basically called me a neurotic old woman for having had the triple test in the first place and here is what he explained to me :
The triple test works out probables not exacts so they only measure a certain hormone in your blood and then combine that with the measurements taken at the scan and plot it onto a graph to come up with the ratio they eventually give you. Now there is another hormone that levels out the effects of the first one (sorry for the lack op specific names) but they don't measure that so you end up with this skewered subjective result.
The dr basically told me that the triple test was a complete waste of time and that if he had his way he would ban it all together - I do believe him as he is the guy who came up with the Nuchal fold test etc. and is brilliant. He advised me to forget the triple test results - easy to do as who wants to fixate on bad news - as he saw absolutely no other markers for downs. The only definitive 2 tests are the CV sampling or amnio.

My gorgeous boy is absolutely fine.
Am happy to tell you more of what he said if you have questions.

Hi Coolmama

Thanks so very much for that, knowing now Dr Nikoliades opinion makes me feel a lot more comfortable. I have the detailed scan booked for Friday and will let you all know how things have gone after that. Its a real shame though that more information isnt given about the triple test in terms of what can effect it and how apparently sort of hit and miss it is, it makes you wonder why the NHS even bother with it at all because it seems to cause more confusion, stress and problems and hence must work out more expensive in the long run than making the nuchal scan available to all.

Many thanks to you all.

Elvina