Triple test result high risk 1:10- what now??

[mamamila]

i'm still bit in shock, just got the phonecall an hour ago and trying to assess what it really means.
been offered amnio on thursday...we are supposed to go holiday on friday..my mind's just whirling

i'd like to hear any advice/ reassurance from anyone who's had a high risk result and taken amnio. i'm worried about the risks of the amnio and confused about the triple test results. i can't seem to find any information on how accurate the test really is

[mamamila]

bump

[LavenderStar]

Can you explain to me what this means - are you saying your child has a 1 in 10 chance of Downs Syndrome?

[lizziemun]

mamamila

I sorry your going through this, not that i can offer much help as i opted not to have either as at 39 i knew my results would be high but also we knew that it wouldn't make a difference to us.

[mamamila]

hi lizziemun

i'm wishing i hadn't had the test now or that i'd paid for the nuchal scan, well i'm not really sure what to think really

i know a 1:10 chance of baby having downs is also 9:10 chance of not having and also that it's only 1 condition of any infinite number any child may be born with. and after all people become disabled every day due to accidents/ illness etc..

but i'm still scared and tearful and worried that the amnio is an unacceptable risk or if i'm being irresponsible to consider not doing it

i just wonder how many people with a high risk result do test positive for downs with amnio, how many miscarry or harm the baby? i know the statistics say 1:100 chance of miscarriage due to amnio but i prefer to hear some mn feedback

[DawnAS]

Hi there,

Sorry that you're going through this. I am 34 and had the Nuchal scan and blood test at 12 weeks. The Nuchal scan came back with a result of 1:750 but the Bloods were 1:35 giving a combined 1:59 so classed as High risk.

I was offered a CVS that week and had it done. Unfortunately they didn't get enough blood from the Placenta, so instead of it all being over, I had to wait another three weeks to have an Amnio, over Xmas.

The Amnio was very straight-forward and much lower risk than the CVS. I had slight discomfort during the procedure but only for about a minute and then had no cramps or pain afterwards at all.

I believe that the statistics of people with a high-risk result for Downs from Nuchal Scans or Triple Tests, actually HAVING a baby with Downs, is only about 2%. Please also bear in mind that with your odds, you still have a 90% chance of it not being Downs, with or without having the test done. These tests only give a "Risk Factor".

We got the all clear on New Years Eve and found out we were having a little girl. I'm 27 weeks PG tomorrow.

The majority of stories similar to this on MN have turned out to be positive.

We needed to know one way or the other so went ahead with the CVS and Amnio. But if knowing would not change your mind about the future of your baby, then maybe don't have the Amnio.

I hope that my story has helped you a little bit...

Good Luck!!

xxx

[DawnAS]

Sorry - just some more advice for you!!

If you decide to go ahead with it, ask the Consultant/Specialist outright what their MC rate is with the procedure. It's your right to know how experienced they are. You can always change your mind and go somewhere else where the Consultant is more experienced. This is your baby and your body after all!!

The woman that did ours (both times), had been doing them one a week at our hospital and had been there for four years and had NEVER had any MCs as a result. That was enough for us to feel confident in her abilities. Although a little annoyed that she didn't get enough blood from the CVS!! But having had both, our baby is still alive and (literally) kicking.

Amnio is much lower risk than the CVS. I think it's about 0.5% risk of MC.

Hope this helps...

xxx

[Diege]

Hi. Sorry you're going throguh this (been there myself). The triple test is notoriously unreliable, and has a very high false positive rate. For every 100 women taking the test,approx 20 will get a screen positive (ie, deemed high risk). Of those 20, only 1 or 2 will actually be carrying an 'affected' baby.
The odds are in your favour, but may be worth calling ARC (antenatal results and choices)who can talk you through the stats etc - they were a godsend for me.
Thinking of you xx

[mamamila]

thanks dawnas and diege

it feels good to hear some other people's experiences.

my head is still spinning but it's just sinking in that nothing has changed i'm still healthy and the baby may be fine
i can see dp is upset/ confused and trying to be super cheerful. i'm most annoyed that the hospital didn't call me back with a time for amnio.

i will go ahead with amnio hopefully on thursday but it looks like we'll have to postpone our holiday, at least for a week.

having thought about it all day i know that i need to know as much as i can do and then we'll see what we're faced with. i am seriously regretting having had the triple blood test though. after 2 months of feeling sick i was just starting to feel 'get into' this pregnancy

i'd still appreciate hearing any more similar experiences it really does make me feel calmer and more positive. i don't feel like talking to anyone in rl yet

[DawnAS]

Mamamila, I know what you mean about starting to feel Ok about being PG.

I had a MC at 6 weeks managed to get PG again six weeks later. But I'd spent the first 12 weeks panicking that I would have another MC so it was such a relief to see the lovely little one on the screen and then to see the heartbeat. Then our dreams appeared to take a nose-dive again when we got the call from the hospital with the test rsults. So I know exactly what you mean...

I'm sure that everything will be fine. Be strong...

xxx

[Northernlurker]

Before they do the amnio you could ask them to do a scan and look for other markers on that - that would give you more information before they do the procedure - from other posts I've seen I think they may do this anyway - but it's definately worth asking about.

[mamamila]

thanks dawnas, it is such a rollercoaster isn't it? the more i think about it the more i'm amazed at these risk measurements, it's like an increased need to panic without any definite proof of a problem but there's no reassurance in lack of evidence or fallibilty of tests

northernlurker, that's good advice. i hadn't thought to ask for a proper scan but they should have a proper look for abnormalities instead of waiting until 20 wks. i hope they agree to.

as i was walking around thinking mad thoughts it did occur to me that if everyone with a high risk did have a child with downs they would be a huge proportion of population. after all these tests haven't been around so long and not everyone takes them

[mamamila]

can i bump this?

[asturgirl]

Hi
i was 30 yr old when I had my results and I was told 1:5!!!!! had a cvs and to our surprise everything was fine. Had some fetal heart scans and everything fine. My baby is due in 6 weeks and I can't believe I had given it for lost. Just think you have a 9:10 chance of having a healthy baby.I wish you the BEST OF LUCK

[Sweetie34]

Hi Mamamila,

Just wanted to give you some reassurance. I was told at my 12 week scan taht we had a 1:15 risk of Down's Syndrome based on my blood results. This was a big shock. I decided against any invasive tests.

We were offered a 16 week scan and a 21 week scan to check for soft markers which would give a clearer idea. It was an agonising wait full of highs and lows.

We didn't tell many people as we needed to know for ourselves first - I lived on teh internet finding out all that I could.

After a while we began to enjoy the pregnancy again because we knew we were going to go ahead whatever the results.

At the 21 week scan we were told no markers had been found. He pretty much ruled out DS as much as he could.

Just remember you can have an amino at any point in your pregnancy. It is much safer n later months - so this is an option.

Wishing you the best of luck whatever you choose to do. But as someone says. Tehre are alot of false positives for a wide range of reasons.

[mamamila]

thanks sweetie34 and asturgirl,

i think i saw you sweetie on another thread- i was reading up a lot last night.
i'm kind of getting over initial shock and trying to reassure dp is helping to keep me calm. i have the amnio tomorrow already and whilst i'm pleased it's soon as i'm 17 weeks tomorrow i do feel i'm on a rollercoaster which i'm praying will just stop and i'm not remotely religious.
when is your baby due sweetie? i agree i'd feel a lot of reassurance with a thorough scan. i'm really not sure of the purpose of all these risk ratios when i read so many stories on here of people with high risk results and all clear from cvs or amnio.
asturgurl stories like yours are keeping me sane, thanks and good luck

it's given me such a shock as i feel super healthy and 'only' 35. i was suprised i got pregnant very fast we'd just decided to start trying and were amazed to conceive immediately. then i lost jan and feb completely, horrible 24 hr nausea. things really getting strained between dp and me. and just the last 2 weeks i've started feeling great, just went and bought a load of maternity clothes, had a haircut, night out with the girls, cinema date with dp. i'm looking very pregnant and starting to enjoy it at last after 2 months not feeling connected to the pregnancy at all.
now i wonder if i was so sick because the baby has a problem, i'm trying to stay calm as i'll find out very soon but i can't stand the thought of losing this baby.

[mloo]

But is 1/10 a high risk ratio? It isn't, really, is it? It's still very likely to be an unaffected baby. But 1/10 is a lot higher risk than risk of m/c that amnio presents, so they have to tell you, so that you can make informed decisions.

Pardon me for saying this. I tried to read carefully, but this is unclear(?). Are you sure you'd want to terminate, mamamila, if the baby does have a chromosone problem? There's no point in the test if you think you never could go thru with that.

I'm sorry you're going thru this, pregnancy is always a potential rollercoaster journey; I wish people were told that more often.

Sickness is much more linked more to babies without chromosone problems, btw. Good luck.

[mamamila]

i agree mloo, it was a shock to be told i was very high risk and i have strted to hate these risk ratios, they don't really mean anything do they. i can see they're all about narrowing down a group for cvs and amnio. the midwife i spoke to said there have been no miscarriages at that hospital due to amnio in the last 5 years but she know's they're higher at the teaching hospital.
the dr will also have a look for markers on the scan tomorrow, the amnio will only test for downs/ edwards/ patau (sorry if sp) and there is clearly a presumption of terminating if positive. tests for other defects will only be done if dr thinks it necessary, i'll ask more
and re: terminating, probably, although it's too horrific to really think through yet. but without support of dp and having the decision in my hands to bring a child into the world knowing what they will suffer, i think my loss would probably be the most responsible.
i'm 17 weeks and this is a very much wanted baby so i'm very much hoping i'm going to get good news

[musicmaiden]

It helped me to read other people's experiences so just thought to tell you I had a 1:13 odds mamamila and have just had full CVS results back that all is well chromosomally-speaking!

My friend had a 1:5 odds and she now has a healthy boy aged 4.

It is a horrible and frightening time but the odds are most definitely on your side.

I don't have any experience of amnio ? the CVS was very uncomfortable but over quickly and as soon as you see that little heartbeat carrying on without a care, your risk of mc goes way down. I felt slightly woozy for a short time afterwards and bruised where the needle had been but otherwise ok. Do nothing and put your feet up for 24 hours afterwards being looked after by dp... he might as well get used to it

Best of luck and let us know - I'll keep everything crossed for you.

x

[mamamila]

thanks musicmaiden, i know the odds are good in one sense but..

i'm just home from supermarket and everything feels unreal, i can't think of anything else.
trying to keep positive but every now and then i'm tearing up.
roll on tomorrow, i just want to get it over with

[mamamila]

thanks musicmaiden, i know the odds are good in one sense but..

i'm just home from supermarket and everything feels unreal, i can't think of anything else.
trying to keep positive but every now and then i'm tearing up.
roll on tomorrow, i just want to get it over with

[LilianGish]

Stay positive mamamila. I had a high risk result (can't remember numbers now, but was even higher when combined with my age - 35 and 37) for both babies. My reaction was exactly like yours with the first. Had the test and everything was fine. Consultant told me that they have to tell you the risk of miscarriage as an overall figure, but pointed out noone had ever miscarried at his hospital. Once I had the result felt so much happier and felt I could really enjoy my pregnancy. Second time I actively hoped I'd have to have an amnio because I'd felt so reassured the first time - ds was also fine. An extra bonus for me was that I really wanted to know the sex and they can tell you for sure with an amnio. Sending hugs. You only have to take it easy for 24 hours after the test so if you can just delay your holiday by one day I would think that would be the perfect antidote to worrying while waiting for the result. Good luck.

[wannaBe]

It's worth bearing in mind that for every two babies that test positive for downs through amnio, three "healthy" babies are miscarried.

So the chances of a miscarriage are greater than the chances of having a baby with downs.

If you wouldn't terminate, why risk miscarriage.

Personally i didn't have any tests as I didn't need to know. As you said, there are infinite amounts of disabilities that are not detectable in utero, and you could still get a result that shows your baby does not have downs but he/she could still have other disabilities.

[mamamila]

thanks liliangish,
i've actually been trying to tell myself on how lucky we are to have access to all these tests..i'm just petrified by the feeling that heartbreak might be about to unfold tomorrow. over dramatic i know but i'm quietly hysterical on the inside

wannabe- i think that's a bizarre and probably baseless statistic.

[LilianGish]

Crossing fingers for you today mamamila - hope it all goes well.

[notyummy]

Hope it goes ok. I came back high risk and after talking over at length with DH we opted for the amnio, which wasn't a pleasant experience, but went OK overall. We had already discussed before we had the blood test whether we would have an amnio, and agreed that we would if we came back high risk. It is a horrible worrying time, and I remember getting the phone call at work from the midwife to say it had come back clear, and going outside to cry with relief (all male workplace and didn't want them to see me blub!) When I came back in they had all worked out what was going on (they knew I had a day off for the test) and they were all worried about the results. When I told them it was ok, one of THEM got all teary for me!)

Will keep my fingers crossed for you. The odds are very much on your side.