High Risk for downs - very confused

[alfieginger]

Hello . I had a private oscar test for downs.The actual scan was fine however the bloods turned the risk into a high risk -well i was told 1 in 260 chance which i know could be worse. the lady was a bit like a robot and put the fear of god in me. they wanted me to have a cvs , which is refused but im down for having amnio test on the 25th feb. im in the middle as for my age i should be low risk and really dont know whaqt to do. i was wondering if any of you out there has had a amnio test?

[whomovedmychocolate]

I'm sorry to hear about your news. A 1 in 260 chance means you have a 259 out of 260 chance of your baby being absolutely normal. An amnio will say one way or another. How far along are you?

I haven't had an amnio but I know a few people that have, it's uncomfortable but not painful and the hardest bit is the wait for the results.

I'm sure someone else will come along in a minute with more help Good luck.

[alfieginger]

thanks very much i will read up now x

[bundle]

the risk sounds quite low to me - but how old are you? i had 2 amnios one with each pg. both results were fine but it's not something to do without very careful consideration. what would you do if your test showed you would have a baby with down's syndrome?

[alfieginger]

im 29 years old. i would determinate the pregancy if the result was not a good one.
my gut feeling is everything is fine, but i dont know if i can go for th eterm not knowing im 14 weeks this sunday

[whomovedmychocolate]

Why do you have to wait so long for an amnio? It seems inhuman to make you wait five weeks to get a result! Also by then you'd be 19 weeks!

Can you go to see a consultant and ask for an earlier appt?

[alfieginger]

ill be 16.5 weeks when i have the amnio - they say you have to be 16 weeks for the test to work, where the cvs you have to have earlier. the results take 2 weeks to come back so yes i wont be far off 19 weeks.my biggest fear i suppose is if the result is bad to terminate they would have to bring on a miscarriage etc etc.

[whomovedmychocolate]

Ah I see - sorry I didn't know that. Do you want to avoid CVS because of the increased risk of miscarriage?

[alfieginger]

I looked at the cvs and the risk of miscarriage is slightly higher than with a amnio.i actually went to the hospital to have a cvs but the baby and cord were in a difficult position so they could not do it. i then refused another one as i spoke to a surgeon and he recommended the amnio as my risk is not a very high one.If there was no chance of a miscarriage i would have a amnio tomorrow with no worries. Its like a horrible circle if i dont have a test and the bady has downs or other diseases as i was high for edwards etc as well, that would be the worst. if i have the test and i do have a miscarriage it could of been a healthy baby.

no one said it was ging to be this difficult. i think it was unexpected all my friends have children and seem to sail through there pregancies.

[alfieginger]

my measurement was spot on, i think it was 1. something. the lady did my scan first and she was saying everything looked fine then she had the bloods after which turned it into a high risk.

[whomovedmychocolate]

Alfie - hold onto your hope - remember that you are much more likely to have a healthy baby. Also a lot of presumed abnormalities are never spotted and spontaneously recover - if you don't have a scan till 20 weeks then you perhaps would never even be aware it was a possibility. That may be why your friends seem to have it easier.

NB I have a friend who had a 20 week scan with no prior screening and discovered her baby was massively disabled and terminated at 22 weeks. It was horrible for her, there is not getting away from it, but she has recently given birth to a gorgeous healthy little girl so even if the worst happens, you will get through it and you can go on to to have a healthy baby.

[pinkteddy]

you could ask for a referral for more detailed scans - would probably have to wait a few weeks for that too though. The more detailed scans could rule out edwards, spina bifida and possibly others. If results were still not clear you could have an amnio then. Did you have a nuchal scan already?

[pinkteddy]

sorry just read that you have.

[alfieginger]

whomovedmychocolate

thanks for your message.i am feeling more positive now .if one good thing has come from it i now know how much i want the baby. it has put all my gitters to bed
x

[StripeyKnickersSpottySocks]

If my maths is right a 1 in 260 chance equates to 0.38% chance which seems better when you look at it as a percentage.

I believe that RCOG guidelines state that any chance of 1 in 250 or lower is classed as "high risk" - so you're outside that.

Good luck with the amnio.

[Har]

Hi Alfie, I had a similar result, low risk for my age (I'm 27), the nuchal fold was good (1.5 or something), heart good etc. Then they added in my blood results and my risk shot up (1:400 so still counted as low risk but scary having seen the risk being 1:4500 or something till bloods calculated in). In the end I didn't have an amnio as I felt everything else looked good, it's still something I think and worry about occasionally but I'm hopeful everything's ok. Most doctors I spoke to said that the bloods are an indicator but nothing conclusive. As far as I know the hormones the test picks up are high in someone with Downs, but on the other hand there are people who don't have Downs who have the same levels. The fact that you are young and the ultrasound was so good points to a good result. On the other hand when I was investigating an amnio doctors seemed to be very confident about it (find a doctor who does the procedure all the time) and really didn't seem to think miscarriage was something to worry about. Of course one does worry, but I think there are a lot of scare stories around when actually an amnio is a very routine procedure. Good luck with whatever you choose and remember however scary your result seems (and I was terrified) you are still low risk.

[DarthVader]

There is a higher chance that you would miscarry a healthy child than that you would find out you are carrying a downs baby.

A 0.38% chance is pretty unlikely in my book! I think it is easy to be panicked uneccessarily by these preliminary test results. In your situation I would not have amnio or CVS for these reasons but of course everyone has their own outlook and own unique situation. I am just trying to say that having neither test is a reasonable option, don't feel you have to test.

[raspberryripple]

Have the test - I'm pregnant with my third child - I'm 36 and having a nuchal scan on 22nd Feb because my second son was born with Downs when I was 32, if it is high risk I will have a cvs. It's just not worth the risk - I love our son to pieces but would not repeat this part of our lives - it was totally unexpected - blood test results came back at 1 in 350.

[mashedbanana]

i had amnio test with 1st child i was 34 and had 1 in 25 risk.i found worst part waiting for the results.luckily all was well.you need to do what feels right for you.good look

[shangrila]

Don't know if this helps but I see that your local hospital were unable to do a CVS due to positioning of the baby. The same happened to me and I faced a long wait for amnio.

The prospect of this drove me crazy, and I rang the FMC in London and they said to come in as they had yet to see Prof Nic fail to take a CVS sample due to positioning. I went and he did the test with no concerns.

Hoping that everything turns out fine for you.

[TheGabster]

Just seen your post and thought my experience my help.

I am 36 and opted for the Amnio (odds were 1:100 - so yours are not that bad!). DH and I talked about it and agreed we did not think we could cope with a Downs baby. I had not really had any problems conceiving so it made the decision easier for me/us.

It really wasn't as bad as I thought it would be, over quick enough and the 4D scan was cool! They looked for the "soft markers" at the same time during the scan/testing to reassure me. We paid an extra fee for preliminary results in 48 hours - they just tell you about the 3 trisomes and then full results follow 2 weeks later! See if this is an option.

Afterwards, I had a few days of obsessive knicker checking (IYKWIM) and sweated waiting for the results, but when I got an absolute definitive answer it was just such a relief to know - no more percentages or odds.

Personally, I thought it helped to decide what I would do about the results before having the test. I hope this helps and good luck with whatever you decide.

[3girlies]

My experience was exactly the same as you TheGabster, I was 36 with my last one, DD3,
odds were 1 in 100, we opted for the amnio as we felt the same way.
The wait for the result is not nice, that is true, but it was great when it was all over.
Your odds sounds much lower, alfieginger, the amnio is up to you, but let me reassure you, it is all over very quickly and the scans are amazing!

Good luck.