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Original poster

High Down´s Syndrome risk in triple test, so scared about amniocenteisi result

46 replies

Heather1977 · 09/08/2008 12:09

Hi, Last week I received my blood test result for the triple test and I got a very high one in 15. I have to go for amniocentesis in 2 weeks and I am really scared. I´m 31 so age isn´t really a factor, but the doctor explained that the high risk could be caused by lots of other things.
They did a scan and could see no abnormalities, as apparently 50% of DS babies have obvious deformities.
But I´m still so upset, crying every day and not wanting to talk to anyone about being pregnant.
Anyone been through something similar? Could do with some moral support!
H

OP posts:
SNoraWotzThat · 09/08/2008 12:24

Poor you, not sure what to say.

mankymummy · 09/08/2008 12:32

i had a 1 in 20 on the triple test and opted for amnio.

the procedure itself... they put a long needle into the abdomen. it feels quite uncomfortable but not really, really painful. you can watch it on screen if you want to. the doctor i had was fantastic.

check when you will get the results back, i had the results for downs back in about 2 hours...(and the rest about a week later). i waited at the hospital as the results were delivered by the consultant which i thought was a really good thing as it meant that i could discuss the implications immediately.

do you know what you will do if the results come back that there is something wrong?

you never know until it happens how you will actually feel but its a good thing to think about it.

happy to answer any questions you have.

lisasimpson · 09/08/2008 12:34

I had an amnio two years ago and the waiting for the results was the hardest part. I was waiting 2.5 weeks which is about average I think. I tried to 'switch off' to the pregnancy during this time, in case it came up with anything bad and we were not going to continue with it.
I would definitely recommend having it if you want to know the outcome for sure and the risk of miscarriage is probably lower than your triple score result. Good luck

mankymummy · 09/08/2008 12:37

two and a half weeks?!!!! crikey, i was extremely lucky then.

lisasimpson · 09/08/2008 12:40

I did have the option of paying for a quick result (2-3 days I think) but it wouldn't have been the full result anyway so we thought we would wait.

Original poster
Heather1977 · 09/08/2008 13:09

I will have to wait for 2 days for my result. I´m not scared about the procedure at all - just hope my baby is OK! I can´t help fearing the worst but I hear that there are a lot of false postives in the triple test. It´s so hard dealing with risk ratios as it doesn´t really tell you anything but you can´t help analysing!
Arrgh, have enough going on hormonally as it is without all of this...

OP posts:
mankymummy · 09/08/2008 13:25

i do feel for you, try and remember that there is a 14 in 15 chance that everything is fine.

my DS is fine, my friend had a 1 in 3 and her son is fine also.

another friend works with children who have downs and i've met some of them, they are the sweetest, funniest children i've ever met and as babies they are absolutely gorgeous.

lowrib · 09/08/2008 18:44

I can guess how you must be feeling, it's horrid. I'm now 20w + 2, and was told at 13 weeks that we had a 1 in 18 risk. It was a real shock, and a part of me was convinved that the results would be positive, no matter how much I tried to rationalise it.

I had CVS (very similar to amnio - great big needle thing) the results came out neative - no downs.

I know it all suddenly seems to become a game of maths - but here are some more figures just in case it helps. A 1 in 15 chance is actually the same things as less than a 7% chance. Or put another way, you have more than a 93% chance of everything being OK.

A friend recommeded the organisation ARC (Antenatal Results and Choices) to me. Actually in the end I never used them because I only learnt about it the day before my results came through, but they're meant to be good, and you can call them for advice about anything to do with antenatal tests.

www.arc-uk.org
020 7631 0280

Good luck, I hope it all works out OK.

lowrib · 09/08/2008 18:47

Actually the thing that helped me most while in limbo before the results, was 'the Rough Guide to Pregnancy and Birth'. I found it a couple of days after the hospital told me about the 1 in 18 chance, and it really cheared me up. It has a very down to earth, funny approach, and was a good antidote to the pretty serious books I already had, and the worries I was having at the time. I really recommend it!

(Not sure if we're meant to recommend products here so posting this seperately in case it gets deleted!)

eidsvold · 10/08/2008 11:11

was given a rough 1 in 5 after an ultrasound although probably higher than that and the result is dd1 who is pictured on my profile.

eidsvold · 10/08/2008 11:12

and I would not change anything.

lowrib · 10/08/2008 14:53

bump

greenbeanie · 10/08/2008 20:04

Really want to send you my support. Just remember that you don't "have" to have an aminio if you don't want to. It is worth thinking what you will do with results whatever they may be. Also with regards to ds there is a huge variation in how someone with ds can be, just as there is with every human being, and the test cannot tell you how severe (or mild) a disablity can be.
Good luck

elkiedee · 10/08/2008 22:50

I got "high risk" results at 12 weeks though mainly based on age in my case (also blood tests). I had CVS as they can do that a bit earlier, I had to wait until the Monday after the Thursday for results but they came back clear.

Based on the experience, I think it's a shock for anyone to get those initial scary results and to realise that they have to make hard decisions and may have to make further ones. It's something you don't appreciate with routine tests. I had my first baby at 37 and my results were still low risk, so I was if anything less prepared for the shock of the phone call second time around.

If you can, take your husband or partner, or someone who can give you whatever support you feel you need along for the amnio appointment, if you do choose to have that further test - it's a choice, not something you have to do. That helped me. I also took that day and the Friday and Monday off work as really resting is recommended - I took sick leave as it's a medical procedure and the rest is medical advice, though the Monday wasn't strictly necessary (generally I have a pretty good sick record even in my 1st pregnancy and this one so far).

There's an organisation called antenatal results and choices (ARC) who can offer telephone advice - they have a website, but let me know if you can't find it on Google and I'll post a link for you.

eidsvold · 10/08/2008 23:04

This reply has been deleted

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eidsvold · 10/08/2008 23:05

oops - sorry that turned into a long post.

expatinscotland · 10/08/2008 23:08

eids, i just want to say, i could read your story every day and it would never fail to make me smile!

i know it's scary, but special needs are not the end of the world!

my daughter has SN, dyspraxia, that couldn't be detected by any antenatal test.

i hope you find some peace, heather.

Clary · 10/08/2008 23:18

Heather I too hope you find the answers you are looking for.

I agree with expat - my DS1 is on the SN register for issues that could never be diagnosed antenatally.

It's nothing like what eidsvold has had to deal with (I too could read your story again and again) but I guess my point is you cannot know everything about your child before they are born - prob just as well.

You don't have to have amnio - but if you go ahead with it, you need to think about what you will do if you get a positive result.

Others would feel, like eidsvold, that there is no point in amnio if you don't plan to terminate. If you need to know or will terminate then yes, amnio is the right thing for you.

eidsvold · 10/08/2008 23:22

actually to pick up on something Clary said - when dh and I said not to an amnio. I stated that it would not make a difference to us - we would do nothing with the information. The cardiologist basically agreed with us - no sense in putting ourselves through it if we were not needing to know 100% We still did some reading up about the heart defect and prepared ourselves for our gorgeous daughter to be born. We contacted the UK down syndrome association who were more than happy to send us information and chat with us over the phone.

PussinJimmyChoos · 10/08/2008 23:27

Eid - lovely lovely post...so inspiring and all of your DD's are beautiful!

mummyhill · 10/08/2008 23:39

Eid lovely post and I agree your girls are beautiful.

I used to work as a live in care officer for adults with Downs Syndrome who's parents were elderly and couldn't cope. It was a great job and I really miss it.

Ceelo · 11/08/2008 08:24

Heather, I had exactly the same experience as you. We are around the same age and I was 1/28 chance of Downs Syndrome. I went through what you are going through, I felt really bad, as I had waited forever to tell people I was pregnant and then as soon as I did there was this whole issue. I even posted on MN and quite a few people made me feel REALLY bad about being "negative" about Downs syndrome and that I was awful to feel so upset. thy also listed a host of things that amnio can't pick up!!! Yup, just what you need to hear!! You every right to feel scared. It will probably be fine; I read that there is high chance of false positives. Waiting was the worst part. I will be thinking of you sending you a hug and knowing how tough it all can be.

twocutedarlings · 11/08/2008 09:07

Ceelo I think eid post was just what was needed on this thread!!. Its good to see things from every angle!! and who better to do that, than a parent who parents a child with downs to put that angle across.

Parenting a child with special needs is not a bad world, its just a differant one.

sarah293 · 11/08/2008 09:17

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mslucy · 11/08/2008 09:23

I had CVS after dodgy nuchal at 12 weeks.
The results were fine. I am glad I had the test as I am a terrible worrier.

CVS and amnio are the only tests that give a reliable result - the bloods and nuchal scan are indicators of risk rather than anything more concrete.

Good luck with the amnio - I'm sure it will put your mind at rest.