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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Screening Test is High Risk fpr Downs, anyone else been here?

54 replies

faby · 27/02/2007 09:34

Hello

Please can someone give me some advice; I live in West Lothian and just recevied news that my screening test for downs has come back as high risk. I have an appointment today for a amnio and I don't think I'm ready to say whether I want this or not ( I only found out yesterday) has anyone been in a similar position?

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Jimjams2 · 27/02/2007 09:40

eidsvold was- and went on to have a baby with DS (she refused an amnio but had further scans which showed her baby was very likely to have DS). She's in Oz though, so will probably be asleep now but you could search on her name. There are others as well and you may find them on a name search for eidsvold.

You can ask for further scans if you want to be prepared a bit. When deciding whether or not to have an amnio the best thing is to decide what you would do if you did get a positive result. If the answer is nothing then you'd probably be advised not to have one because of the small risk of miscarriage.

Jimjams2 · 27/02/2007 09:41

oh hope you don't mind me answering eidsvold I'm assuming you'll be asleep for a while though.....

FioFio · 27/02/2007 09:42

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ledodgyDave · 27/02/2007 09:45

When you say screening do you mean the blood tests or a nuchal scan?

With her first pregnany my best friend's blood results came back as high risk and she went through weeks of worry then had an amnio which came back clear. I know the blood tests do show many false high risk results.

Gingerbear · 27/02/2007 09:47

What was the actual figure for high risk you were quoted?
With my first baby I was quoted 1 in 100 and offered an amnio, but as the risk of miscarriage is also about 1 in 100, then I opted not to have one. DD does not have DS.

Gingerbear · 27/02/2007 09:48

blood tests are notorious for revealing false high risk.

ledodgyDave · 27/02/2007 09:49

Make sure you find out the risk of mc for amnios for the actual hospital you are getting it done in as they can vary.

malaleche · 27/02/2007 09:58

I spent days on internet trying to understand the blood test scores and in the end i realised that it was all irrelevant numbers and statistics and the only thing that really mattered to me was this:

If you knew your baby had DS would you have an abortion?
Would you rather lose a healthy foetus than have a child with DS?
If your answer to those questions is yes then have the amnio.

I was 35 when preg with dd1 and didnt have amnio, i was 38 when preg with dd2 and the blood rest showed about a 1/250 risk - more or less the same as the risk of miscarriage after amnio (some say its 1/100 but depends who's doing it) did have the amnio, she's fine.
If you decide to have the amnio stay in bed for 24 hours after you get home and take it very easy for the next 2 or 3.
Good luck.

Original poster

faby · 27/02/2007 10:06

Thank you ladies this information is really useful.

The result came back as i in 100 and it was a blood test, i am 20 weeks pg. I have decided to ask for a anomoly scan and see what that reveals?? I could not forgive myself if amnio resulted in miscarriage.

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HumphreysCorner · 27/02/2007 10:08

Hi-had this with DD2. Got home to find a handwritten note from the MW saying blood result was 1:195 and appointment was booked for next morning. Remember feeling distraught and crying down the phone to everyone. DH & I had a discussion with a MW then a scan to look for markers of which there were none. We still wanted to know so opted for an amnio and paid for a Fish test so got the clear results back 2 days later. A work colleague of DH's got a similar result and went for the meeting at the hospital but decided against the amnio and her DS2 is fine. Knowing what I know now about these blood tests I don't know whether I would have an amnio again just because the risk was high. What I mean is that the results seem to be so hit and miss and are based on your age, weight, how sick you have been, your due date and other factors too. Another friend had an extremely high risk result because they had put the incorrect due date in. They just don't seem accurate IMO.

Am waffling now but hope you make the choice that is right for you.

xxx

ledodgyDave · 27/02/2007 10:10

That's a good idea re the anomoly scan as you'll be able to see if the baby has any down syndrome markers which may be able to help your descision.

grannycrackers · 27/02/2007 10:13

my last two pgs showed a high risk following blood tests. for my dd there was a high risk of downs syndrome and for my ds a very high risk of edward's syndrome. the anomoly scan also showed an indicator for my ds - enlarged kidnies. i had amnios for both and both babies did not have either of the suspected problems .

speak to your consultant - mine was very kind and gave us all the details, the risk at my hospital of mc was about 1 in 200. the first time i went to have an amnio i changed my mind just seconds before and everyone was ok about that and i was offered another appointment in a week which i did go for in the end.

one piece of advice - if you do have amnios get a good escapist book to read to take your mind off waiting for results

Original poster

faby · 27/02/2007 10:13

humphreyscorner, you haven't waffled your info is really helpful. It is such a hard decision to make. I am starting to think that I should not have had the screening tests in the first place.

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theheadgirl · 27/02/2007 10:20

Yes, I was in this position - blood test came back at 1 in 90 and I was offered amnio which I refused as I was 20 weeks pregnant at this time. I wanted to know for sure and was tempted by amnio but, as my partner pointed out, we wouldn't terminate for downs, and the risk facotr given was almost equal to the risk of miscarriage after amnio. My DD does have Downs Syndrome, with hindsight I'm not sure I would have been better off knowing. I think the worry of how life would be about a child with Downs was worse than the reality is proving to be - my DD3 is a joy!
However, I have known many people who had a higher risk factor than my 1 in 90, and they didn't have a baby with Downs. Its a very difficult time for you I'm sure. I wish you all the best xxx

FioFio · 27/02/2007 10:25

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Original poster

faby · 27/02/2007 10:26

Headgirl

Do you think that knowing better prepares you for a child with DS. I thought I'd have a detailed scan and then re-think amnio from there?

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theheadgirl · 27/02/2007 10:26

I agree Fio - just cos the tests are on offer doesn't make them right for everyone.

Jimjams2 · 27/02/2007 10:30

I think that knowing there's a high possibility that something might be up can help prepare you (a scan would give you that sort of info). I haven't had that in pregnancy but had it with both ds2 and ds3's infancies (they were both very high risk of autism- as they have a severely autistic brother). Uncertainty is not easy to live with- but I suppose with pregnancy at least it is for a finite length of time. I think if you were planning to keep going with the pregnancy whatever, then knowing for sure doesn't really prepare you any more than knowing there's a distinct possibility.

Jimjams2 · 27/02/2007 10:32

I think ds2 and d3's risk of autism was something like at least 1 in 30.

Original poster

faby · 27/02/2007 16:15

Thank you for your support. I went to the hospital today and discussed my options. I knew that I would not have a termination if my baby had downs, so I asked to have a scan instead of an amnio. Although, the scan is not at all a diagnostic test it could show some abnormalities associated with DS. Scan was normal. I am back again in two weeks for a fetal heart scan and can think again about amnio in interim. I feel a lot better than i did this morning. Thanks.

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theheadgirl · 27/02/2007 20:13

Faby, I'm pleased to hear you're feeling better. I'm not sure knowing would have prepared me more - it really is true that although people with Downs share certain characteristics, its equally true that they are all individuals. Your baby will be his/her own person. Whilst its useful to find out all about your childs condition much of it won't be applicable and may just stress you without reason if you see what I mean.
A scan will tell you about obvious heart problems, which is a big thing to cope with in a newborn. Thankfully, I haven't had to cope with that with my DD3, and presumably there's nothing obviously wrong with your baby's hart? I think the rest of looking after a child with Downs is just something you have to live through on a day to day basis. And that daily reality is not as bad as I worried it would be. DD3 is a lovely little girl, with her own determined personality.
Things sound very hopeful for you and your baby. Of course no one wants their child to have SN. I wish you well, you are pregnant with a baby, don't let worries about SN spoil your enjoyment of being pregnant
p.s. did you find out the sex

theheadgirl · 27/02/2007 20:14

heart (and I am a nurse FFS!)

Original poster

faby · 27/02/2007 21:23

Nope as tempting as it was didn't find out the sex of the baby, we said that we wanted a surprise.

Thanks again for your advice everyone.

OP posts:

katelyle · 27/02/2007 21:34

Something else to think about that I found helpful in very similar circumstances is that they call 1:100 very high risk, but no one would ever bet on a 100 to 1 outsider. It's all a matter of perspective - a 1 in a 100 risk of Down's syndrome means that 99 out of a 100 babies will be born without the syndrome. It helped me to think like this, faby - I thought it might help you too.

LieselVentouse · 27/02/2007 22:40

Im in Glasgow and I got a V. High Risk result in my first pregnancy. I freaked out but was later told that V. high risk was still 1:250 or soemthing like that. I did have an amnio to put my mind at rest and everything was fine. I wouldnt worry about it too much.

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