Worried First Timer age 38: should I go for a CVS or Amnio? Pls help

[Pucci]

Hello there,
This is the first time I post on the site and first of all I want to thank you all for the great help and support you have given me during this first trimester of my PG.
I am 38 and I am 12 wks PG, I went to the Foetal Medicine Centre for the OSCAR test (Nuchal+nasal bone+tricuspid blood flow+PAPP-A,etc) after the test the estimated risk is Trisomy 21 (Down's) 1:2562 and Trisomy 13(Patau Syndrome)and 18 (Edwards Syndrome)1:4515. I am aware to be a tad paranoid here but please forgive me since this is my first PG ? I want to ask you if giving this result I should go for a CVS or Amnio since the ultrasound cannot exclude all the other chromosomal abnormalities or genetic syndromes. Thank you in advance for your help.x

Hi there, and many congrats on your pregnancy.

I would say that the reults you have had back are really good, and wouldn't warrant amnio or CVS.

The advice I was given was that if the result came back as 1:250 or less then further tests would be appropriate depending on what you would do with the info iyswim.

Hope that helps a bit. Good luck.

I believe the risk of miscarriage with amnio is 1:100 and with CVS it is 1:50. I would compare those odds with the risk of the genetic disorders you describe and then make your own decision. I had DS3 at 38 and seem to remember the background risk was about 1 in 200 for my age but went up to 1:2500 after nuchal testing . I felt comfortable with that.

The risk ratio you describe seem very low to me but obviously cannot be ruled out altogether without genetic testing. How much do you feel the need to know?

I had a CVS at exactly your age. My reasons? With the CVS you get your results earlier, so should you decide to terminate it is less traumatic than at amnio stage where you will have a bump and possibly even feel the baby kicking. On the more positive side you will also have peace of mind sooner. Also, the CVS checks for more things than the amnio IIRC.

re the stats for miscarriage, it really does depend on where you get it done. The official stats are a national median, but I went to a large teaching hospital where 1000s were carried out every year and they hadn't lost a baby in a couple of years. Also, the CVS rates tend to be higher as at 12 weeks you're more likely to miscarry independently (ie nothing to do with the CVS) but the percentages still get worked into the stats.

The chance of a miscarriage triggered by amnio or CVS is something like 1:100-200 (depending on the skill of the person doing it). Sorry, but it's a no-brainer IMO.

I have, as it happens, been in a similar position to you. I was 34 when I had ds1. The first set of tests cam back with something like your risk. Then at the 20w anomaly scan a soft marker was detected. I ended up having a raft of other tests and scans, and my risk was revised to 1:2000. Still nowhere near the risk associated with amnio. I took yhings no further. The baby was monitored by US and was born normal and healthy.

your test results are really very good and don't really need any extra testing IMO.

My AFP test for Downs (im 23) was 1:4600; at my age maternal age alone risk is 1:1600 (ish) so your results really are great for your age, great anyway for any age!!

Congrats on your pg.

I have had amnio and CVS - I wanted to be absolutely certain that there were no genetic problems even though nothing showed up on the nuchal test and I had pretty good risk numbers. With my first pg I had the amnio that showed there were genetic problems so I had a termination. Second time around I had CVS and all was well.

I think I needed absolute certainty and the first time around that was the right decision as I was the one in a thousand that it happened to.

Don't want to persuade you either way - it depends on what you would do if you found there was a problem. I knew I would terminate, and did. A miscarriage would have been less of a problem - I had already had two of those and was more willing to risk another than to risk serious genetic problems.

So just to say, you're not the only one to feel like this. Not sure if that helps much but just my experience.

Hi; it's a couple of years ago now but i was in the same position as you when I was 38 and pregnant. I'm now 41 with a 2 year old. But i had the same sort of dilema. I had nuchal scan and got a result that seemed ok tho of course higher than most cos of my age but, as I am crap with numbers the figures didn't mean alot to me. All I could think was 'well before I took the test the answer was "Maybe" the baby might have something wrong with him and after the test the answer is still "Maybe"!' So I wasn't reassured though a lot of folks might have been reassured. Can't remember my numbers but, as i say, it wasn't to do with the numbers to me it was to do with knowing for certain and the only way i felt i could be certain was to do an amnio. I think it was the suspense that was killing me; it was my first pregnancy and I just couldn't bear the wait and the worry that he might not be OK. I really don't know what I would have done if the amnio results were bad, but I used to work on an advice line for people with disabilities and their carers so to me the thought of caring for a severely disabled child was a very real image in my mind as i had spoken to thousands of parents coping with looking after a child with a severe illness or disability in my job. I therefore felt a need to know. I got help from an advice line called something like Choices and something or other for pregnant women; wish I could remember the name but the Fetal Medicine Centre might give it to you. I actually ended up at the Fetal Medicine Centre on Harley Street having an amnio from a pretty famous Greek doctor, can't remember his name but they'll be able to tell you as all he does is amnios all day long so his risk of causing a miscarriage is far less than the national average for amnios as he's the best! That's what the advice line told me and he was lovely and it was over in an instant and pain free. There was a risk of miscarriage but I couldn't bear not knowing so i did it and wen with him as he was the best at it apparently so the risk of miscarriage was very low. Of course everyone is differnt so all you can do is think very carefully and not be influenced by other's opinions. My best friend told me at the time that whatever decision you make it will be the right decision, so go with your own feelings and don't feel guilty or worried about what others might think. Don't think you're being paranoid; it's your body and your choice entirely. It's you that will have to live with the outcome; whether it be a miscarriage or caring for a severely disabled child or whatever so it's noone else's business. Go with your gut feeling; don't make yourself miserable. Try and think clearly what it means to you and you alone (though I guess hubby should get a bit of a look in, it's still mainly down to you as it's your body and doubtless you who will do the bulk of the caring for the baby) Good Luck. You can't really ask us giving your results whether or not you should go for a CVS or amnio or not as it is very much a matter of personal choice. All we can do is tell you our experiences as I have done.

Thank you very much for your comments and for sharing your personal experiences, it means a lot to me.

We weren't happy with a "maybe" either, but we were heavily influenced by a friend who had amnio in a very respectable centre and baby was fine, but the waters broke. She was on bedrest and then went into very premature labour. Long story short - their DD is now fine, but really did beat the odds and almost died several times. We decided against amnio.

Those results are great, I am 38 tomorrow and my results were 1 in 750 for downs was offered amnio but said no as I think that that figure means low risk

Thank you again - to all of you. x

Hi Pucci, I was also offered all the tests and I declined them due to the risk of miscarriage being greater than the risk of genetic disorders. I also receieve a feotal assessment scan at around 18 weeks which looked indepth at every part of my baby, it took about 50 minutes and gave me the reassurance that all was well.

Hi Bananahammock,
I am going to see my obstetrician tomorrow morning to discuss options just before my week 15, I am also booked for an abnormality scan when I'll be in my 20 week, just wondering if this was the scan you had too.
Thanks! x

Blimey Pucci- your results couldn't be much better. I had an amnio on Tuesday - my odds were 1 in 140 (I'm 34) for Downs - that was from the triple test.

Couple of things: if you do decide to go for an amnio - bear in mind, it hurts a tad (mine hurt a lot) and while it can bring reassurance (I got the results today and I'm having a healthy boy), you have to wait quite a while for the results unless you pay for private analysis (we did - for £150 you get the results in 48 hours rather than 10-15 days). Also you have to be aware that if the amnio shows anything dire, the later you have it, the harder the choices. Once you have felt your baby kicking, it's a tangible baby, not a theoretical one. Something we battled with for a week while we were waiting for the test day.

Personally I'd have preferred to have the test earlier but because we didn't realise our dates till week 10, we were too late to book a nuchal round here.

But sounds like you are being a normal overly paranoid first timer (as I was). Sounds like you are most likely having a normal healthy baby.

Pucci - I don't think you should have any more tests. If you do, it's far, far more likely to cause a miscarriage than it is to detect any chromosomal abmormalities. The big problem with any kind of antenatal testing is that you will never be told that everything is OK because they can't tell you that.

Your baby could have any or several of the problems that they are not able to test for antenatally (but probably doesn't). Amnio and CVS can exclude common chromosomal abnormalities, but not all chromosomal abnormalities, they don't look for genetic syndromes. The only time they can detect genetic syndromes is if there's a reason to look for a particular one, and the genes behind it are documented, they can have a look for that one alone.

You won't get the reassurance you want from more testing.

My first pregnancy was when I was 28 and your results were better than mine just on my age.

The key is what do you want the results for and what would you do about the information.

Pucci your results aren't far off mine and I'm only 31! I wouldn't have an amnio even if they were high risk though personally, there's plenty of other things to worry about that can't be tested for so having kids is always going to be a lottery.

Pucci - your results are excellent and nowhere near the figures where you should be considering CVS or amnio - did you just get the results in the mail? Was there no discussion of them yet?

The numbers come from an equation into which are plugged all your results plus age - and at 38 the age factor (based on statistics) is heavily weighted against you (ie not in favour), so to come out with such numbers your actual test results must have been excellent.

Please discuss with your obstetrician, but I think they are cause for celebration, no?

Pucci, your results were similar to mine and I didn't go for the amnio. I am 39. There is absolutely no test that can assure you that the baby is 100% normal ( who is 100% normal anwyay?) The risk of miscarriage from amnio is actually far higher than your risk of trisomies so wouldn't be worth it IMO.

I elected to have amnios for both pregnancies (was 35.5 in first pregnancy).

I was in Canada for 1st preg so getting an amnio was no prob due to my age.

For my NHS trust the 'miss' rate for nuchal fold was 20%, and they didn't do a triple test - not good enough for me.

You should look into your hospital's miss rate before going any further.