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what should I expect after getting an 'increased risk' result on Down's syndrome blood test? Help!

(44 Posts)
tomtum Wed 10-Sep-08 20:44:14

Had a letter today to say an 'increased risk' had shown up, and to go for an appointment tomorrow. Don't know what to think - any advice would be gratefully received...

nobodysfool Wed 10-Sep-08 21:13:52

No advice but bumping xxx

tomtum Wed 10-Sep-08 21:15:54

thanks nobodysfool!

Ohforfoxsake Wed 10-Sep-08 21:17:49

What reason do they give for you being an 'increased risk'? Being 35 is classed as an increased risk.

Have you had your 11 week scan? And did they measure the nuchal fold? I had a 1 in 5 chance of my baby being born with Down Syndrome, and had a CVS. It was fine, but even if its not a good result, there really is a lot of support on here. So please, try not to panic. smile

tomtum Wed 10-Sep-08 21:23:52

Think the increased risk was from the blood test done, but there wasn't any more detail in the letter. I'm 31, but feeling older at the minute!

tomtum Wed 10-Sep-08 21:25:54

Also, no mention of nuchal fold measurement when I had the 11 week scan.

However, nice to know there's a lot of support- thanks!

Ohforfoxsake Wed 10-Sep-08 21:34:52

Sorry, I didn't read your thread title properly. blush

I'd like to say don't worry, but you will, and my heart goes out to you. There are more tests that they can do. I went for a CVS because it was more immediate, although the risks were higher. An Amnio can be done from about 18 weeks.

I don't know what tests they do now, I had a blood test with DS1 7 years ago, nuchal folds for the next 3, and DD2 had a 1:5 risk of DS, 1:17 of another chromosonal disorder. The chromosonal tests came back OK, we had to have a full scan to make sure there were no organ defects.

So, despite the high risks, my little girl (now 14 months old) was just fine.

I would say that this was before I had discovered MN. Since then I've learnt a whole lot more about DS, and my knee-jerk reaction then would be very different to how I would react to the same news now. I suspect your mind is racing and you are having a panic, but sit tight and breath deeply until you know more. Good luck, let us know how you get on. smile

Ohforfoxsake Wed 10-Sep-08 21:34:53

Sorry, I didn't read your thread title properly. blush

I'd like to say don't worry, but you will, and my heart goes out to you. There are more tests that they can do. I went for a CVS because it was more immediate, although the risks were higher. An Amnio can be done from about 18 weeks.

I don't know what tests they do now, I had a blood test with DS1 7 years ago, nuchal folds for the next 3, and DD2 had a 1:5 risk of DS, 1:17 of another chromosonal disorder. The chromosonal tests came back OK, we had to have a full scan to make sure there were no organ defects.

So, despite the high risks, my little girl (now 14 months old) was just fine.

I would say that this was before I had discovered MN. Since then I've learnt a whole lot more about DS, and my knee-jerk reaction then would be very different to how I would react to the same news now. I suspect your mind is racing and you are having a panic, but sit tight and breath deeply until you know more. Good luck, let us know how you get on. smile

tomtum Wed 10-Sep-08 21:40:21

Thank you very much

I think now maybe I should just turn the internet off, stop worrying(!), and see what they say tomorrow.

I'll let you know how it goes.

jenwa Wed 10-Sep-08 21:41:54

Hi there
I am 32, had a 1 in 20 risk of downs due to bloods taken at 16 weeks.
Dont think they measure /look at nuchal fold on norm scan unless you have paid for the nuchel scan.

I had an amnio done (has risk of 1 in 100/150) M/C but we needed to know. Anyway results came back that baby did not have downs or any other chromosone disorders. It can just be the presentation of the blood, apparantly it can be presented in a certain way in downs but can also sometimes be presented the same way in normal pregnancies (pregnancies with no complications).
Can I ask about your BMI? Mine was low at my 16 wk appt and someone said that if you are underweight then the blood taken can be more concentreated than that from someone who has a higher BMI.
It was a very worrying time when I had my tests as they take awhile.
Have you been given a statistic? Your MW should have contacted you. Mine called me to inform me of the risk.
High riak is anything up to a 1 in 250 chance so you may have less risk than I did.

Ohforfoxsake Wed 10-Sep-08 21:46:23

Stop Googling and get some sleep wink

Good luck smile

jenwa Wed 10-Sep-08 21:49:13

Also to add to that, looking on the net made me realise that there were alot of false readings and that they are not always accurate. I know you will still worry until you receive your results but try not too and try to be positive.
Speak to your MW tomorrow and arrange to see her, mine came out to the house the next day to chat to me about everything and she was really good. She left a message with the consultant who did the amnio about everything we spoke about.

Also try to know what you want to do in the long term as alot of people can be very opinionated and this has to be your decision and no one elses.

laughalot Wed 10-Sep-08 22:00:36

I was 26 when I had my ds and my risk was 1/100 we decided to have the amnio it wasnt that plesant but gave us the answer we needed. Everything was fine try not to worry I know its very difficult hopefully they will sort it for you tomorrow.

tomtum Wed 10-Sep-08 22:19:04

Thanks laughalot

Jenwa - that's interesting what you said about BMI, I wouldn't have said it was that low but the midwife did comment that it was at the low end of normal

No statistics as yet...

Think I'll go to bed and see what happens tomorrow - thanks for all your responses, feel more prepared now

nobodysfool Thu 11-Sep-08 17:32:14

How did you get on Tomtum?

Ohforfoxsake Thu 11-Sep-08 18:46:00

Just checking in, hope everything is ok.

jenwa Thu 11-Sep-08 20:20:27

tomtum How did you get on today? been thinking about you.

pluto Thu 11-Sep-08 20:47:43

I hope all went well today Totum. I am so glad to find this thread because I am facing exactly the same situation and I'm really worried. A community midwife called round to see me late this afternoon with the results of my quad test which was taken on Monday. I have a 1/ 190 risk. I'm 38 and apparently 1 / 200 is considered the threshold for low or high risk, so as you can see the result isn't really all that high in terms of risk but it's on the "wrong" side of the threshold. Tomorrow I have to call a midwife based at the local hospital who can help me understand the implications of these figures better and I have been provisionally been booked in for an amnio on Tuesday morning if I decide to go ahead (DH thinks we should, I'm burying my head in the sand). I too would be grateful for any advice or support to help me keep a perspective on this? - DH is doing a late night so I've only spoken to him on the phone and I feel really upset - but I've had to put on a brave face for 8yr old DS so he doesn't pick up any vibes. How long do you have to wait for the amnio results?

tomtum Thu 11-Sep-08 21:07:53

Sorry to log on so late - haven't been home long as I went to mum's for a bit. Meeting the midwife today, the risk is 1 in 220 - so quite similar to yours pluto. Don't know what to think really - the threshold in this area is 1 in 250 is low risk.

I wonder if we should avoid an amnio; the local risk for miscarriage with amnio is 1 in 200. Has anybody just ridden it out and managed to not let it dominate things?

Pluto - the one thing I have found so far is that I've needed to talk this over lots with DH. Will you get chance to tomorrow?

jenwa Thu 11-Sep-08 21:13:38

Hi pluto
So sorry you are in this situation too, its difficult not knowing. You have a very small risk though but any risk is still quite daunting. I had a 1 in 20 so the MW said I had a 5% chance but 95% that all was ok which made it seem alot better. Your risk is lower than mine so your percentage is a very small one so try not to worry too much.
I had the results from the blood test on the fri (although they had tried calling the day before) and the amnio the following weds and the results the following tues. I had heard it takes 48 hrs to get results back but they told me 72-96 hrs and I had a bank holiday mon in between. It depends on the time of day etc you have amnio and how quickly results get sent and returned. In my hosp they have to send to b'ham so its not local testing. It may be different where you are.
Are you aware that the amnio does give a 1 in 100/150 risk of M/C? I had one and the consultant did the amnio, I think it can often depend on who is doing it (experience wise) I think you have to decide on what your long term plan is. You do not need to say anything on here but remember if you would go ahead with the pregnancy no matter what then maybe you would choose not to have the amnio unless you just want to prepare yourself.If that makes sense.
It may be worth asking your MW to come to the house to see you as mine did and it was really helpful, just hearing that it can happen alot and there are alot of false results also being aware of everything and someone else to talk to who is not family and will not judge you for any decision you choose.
Hope all this helps.

pluto Thu 11-Sep-08 21:19:04

Yes - the 1 / 250 is the "normal" threshold. The 1/ 200 is the age adjusted figure. I don't know if this makes my stats better or worse really. For my age obviously it doesn't seem so bad but it's quite a bit less than the 250 benchmark. I know I must keep a perspective on this as really it could be a lot worse. I dread waiting for amnio results, especially if they take a long time but I think DH and I will probably come to the conclusion we need to be informed rather than worrying for the rest of the pregnancy with the big "what if.." I feel really bad all this. I hope phoning the midwife will make it feel clearer tomorrow.

Ohforfoxsake Thu 11-Sep-08 21:26:39

My heart goes out to both of you, but try to remember the odds are still vastly in your favour.

I know that doesn't help how you feel, I kept telling myself that, but it doesn't settle the worry.

Personally I needed to know so had further tests, and I'm glad I did. The worry would have taken over my life and my other children would have undoubtedly been affected. And I knew nothing of Downs Syndrome, my ignorance made me panic and scared.

There is an MNer called Thomcat who's daughter has DS. She made a real difference to my understanding. Perhaps do a search for her threads?

Good luck both of you.

tomtum Thu 11-Sep-08 21:30:32

Thanks Ohforfoxsake. I think I do need to find out more about what it might be like to have a child with Down's syndrome, especially if we don't go for amniocentesis.

tomtum Thu 11-Sep-08 21:36:58

Best of luck to you pluto - I really hope your amnio turns out to be fine

pluto Thu 11-Sep-08 21:37:06

I'm just going to keep repeating the mantra "it'll be alright" for now. I have taken an hour off work first thing tomorrow so I can call the midwife who I've been told I should speak to at the hospital. I hope I'm able to track her down before I need to go into work. I'm not in the sort of job where I can sit by a phone privately and wait for her to call me back and I really don't want this hanging over the weekend. Thank you for the kind messages.

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