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Pregnancy

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

Original poster

high risk downs result

53 replies

SanAndreas · 06/07/2009 12:56

hello there

Just recieved the news that my bloods have shown that im high risk for Down's. 1 in 180.

Wasnt expecting it even though i am 39. Its my third baby.

Im 19 wks now and couldnt face a termination and always said id never terminate but what the hell do i do. They offered me an amnio but is there any point? On the other hand how the hell can i wait until the baby is born to find out. Im having my anomoly scan on Wed which might show something, but what if it doesnt?

Im really worried now, ive got work this aafternoon but cant face it, but i suppose i wwill hav to just go.

Any advice please?

OP posts:
Original poster
SanAndreas · 06/07/2009 13:42

No one got any advice at all?

OP posts:
amisuchabadmummy · 06/07/2009 13:46

Sorry you are in this situation. I had a 1 in 30 risk of Downs with my DS.

I think you need to decide whether you need to know before the baby is born whether it has Downs or not.

If you need to know then you need to weigh up the 1% risk of miscarriage from having an amnio.

I know its probably not much comfort but there is 179 out of 180 chance your baby does not have Downs....

nigglewiggle · 06/07/2009 13:47

I would go to your scan and see what they can tell you then. Then discuss with your MW.

Remember a 1 in 180 risk means 179 won't be born with downs.

I don't have any personal experience to share, except that my risk increased significantly from DD1 to DD2 and my MW explained that it was purely because I had aged 2 years.

Sorry you are going through this and hopefully you will be able to get some good advice and support.

lljkk · 06/07/2009 13:49

I suggest U see what the scan reveals (or not). The scan will tell you what you need to know before the birth.

Ciara11 · 06/07/2009 13:49

Sorry, im not sure what to advise, but im sure someone on here will have some advice.

Im still waiting for my nuchal scan results and i think like you i would be in a quandry what to do.
Like you, i couldnt terminate and therefore probably wouldnt have the amnio cause it wouldnt change my mind but plan the birth as if it has downs and if it doesnt all the better, but if it does then you have researched it and know what to expect.

Its probably best to keep yourself occupied at work until the scan on wednesday and then decide what is best to do for you.

Big Hugs

Original poster
SanAndreas · 06/07/2009 13:51

Thanks, Thats exactly what my dp said about there being a one in 179 chance all is ok. My risk with my other 2 were so low that i hadnt even thought about it all.

I dont whether to muddle through the next two days at work or phone in sick. I keep thinking about it, but not sure thats a good enough excuse not to go to work. After all, nothing has been confirmed

OP posts:
PlumBumMum · 06/07/2009 13:52

I had a 1 in 42 with dd1 when I was 24, I didn't go for further testing as I was prepared to wait and see, although towards the end they did offer me quite a detailed scan where the doctor said everything looked normal,
and then told me a list of reasons that automatically give high results
eg.
bleeding in early pg
race
if your dates aren't quite right

Original poster
SanAndreas · 06/07/2009 13:52

Thanks Ciara

OP posts:
Original poster
SanAndreas · 06/07/2009 13:54

Plum, I am white British, never had bleeding, pretty certain about dates. Hope my scan puts mind at rest.

OP posts:
meep · 06/07/2009 13:55

I was in your shoes and had a high risk result from my nuchal scan. I now have 3mo dd2 who is fine (and so very precious), but I felt like my world had stopped when I got that phonecall.

I took the risk of an amnio and sobbed for days beforehand. It os such a hard choice to make, but I needed to know.

There is a topic here with lots of helpful advice and people to talk to.

Get as much love and support from those closest to you.

PlumBumMum · 06/07/2009 13:57

btw I didn't even get the test done with my other 2 dcs as I wanted to avoid the worry as I knew I wouldn't go for further tests!

PlumBumMum · 06/07/2009 13:58

I was the same SanAdreas, go for the scan and then decide from there, good luck

SKYTVADDICT · 06/07/2009 13:58

My last DS was 1 in 90. Didn't have amnio. The 20 week scan should be able to put your mind at rest or otherwise. Good luck x

waitingwaiting · 06/07/2009 16:13

Hi,
At the age of 39 I actually think that you have a good score and I'd try not to worry too much about it if you can. The blood tests are not at all reliable and just make women worry. I was in the same position as you as I too had a high score, I looked into the amnio and decided it wasnt worth the risk, so I decided to wait and see... I did worry through my pregnancy and went on to give birth to a gorgeous little girl who is now 2. I also remember about a lady which my midwife told me about, who travelled from the midlands to london for an amnio and was delighted that the results came back all okay, so she thought she was going to have a perfectly healthy baby, however sadly when the baby was born it was brain damaged.... so even with an amnio, one never fully knows what the outcome will be... Hope every thing turns out okay for you and you are blessed with a healthy happy baby.

waitingwaiting · 06/07/2009 16:16

ps.. meant to mention, I'm currently pregnant with baby no 2 and this time I've decided not to bother with the blood tests.

sarah293 · 06/07/2009 16:29

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pasturesnew · 06/07/2009 16:29

I think it is worth asking the hospital some more about the amnio risks in that hospital by that specialist in relation to your pregnancy, I know amnios can be dangerous but I am not sure if the statistics are skewed by pregnancies that are higher-risk anyway, or amnios being performed by a v good specialist etc.

My main worry about Downs would not be the syndrome itself but any accompanying health problems, if the baby's heart in particular was all right on the scan I would be a lot happier.

Hope everything else was OK?

I note that 179/180 gives a 99.444% probability that the baby does not have Downs syndrome.

sumomum · 06/07/2009 16:56

I'm 25 weeks pregnant with DC2 and my results for DS were also high, 1/213, I am 31. My initial reaction was utter shock, however, I now feel that was probably more to do with the way the hospital broke the news. We were offered a amnio, however the risks of that far outwayed the test results.

Putting in perspective helped alot, please remember that blood test is only 75% reliable. We had a detailed scan that did not show up any concerns and the usual 'soft markers' were fine. However, scans alone cannot provide any certainty.

I still have days of upset and wondering whether things will be ok at the birth. But I'm sure every pregnant woman has those thoughts too. Pregnancy is a gamble whatever way you look at it.

I would recommend that you contact ARC for advice also, they were very helpful to me. www.arc-uk.org/

P.S If I am lucky enough to have another pregnancy I will NOT be having any further tests

alittleteapot · 06/07/2009 19:14

If you wouldn't terminate def not worth the miscarriage risk of amnio imo. The 20 week scan will be able to check for health problems - heart etc - and also for downs markers which may be reassuring if absent (though they can't reduce your risk factor apparently.)

I also had a high risk result based on bloods - 1 in 100 - though nuchal was fine. I went to the Fetal Medicine Centre for a second twelve week scan where they look at other markers like nasal bone and stomach. My risk dropped below 1 in 1500. They can only calculate your risk with the information they have and factoring in different markers can make a huge difference.

Good luck

Frasersmum123 · 06/07/2009 19:21

With my DD last year I was given the same result 1 in 180.

I decided that I wanted to know, not because I would have terminated if it had come back as a positive result, but because I would torture myself fo the next 20 weeks of not knowing so I had an amnio the next day.

Its a personal thing. You need to be happy with whatever you decide

Frasersmum123 · 06/07/2009 19:24

Oh and my results were negative BTW

muddle78 · 06/07/2009 20:52

sanandreas, i am so sorry that you have had this result. i think it would be best for you to get amnio because if your baby has downs they can check his/her vital organs. downs is not just a behavioural/learning problem syndrome it also causes serious heart defects ect in some babies that can be fatal. my first son was stillborn due to heart failure from trisomy 21 (downs). i did not have the test as i was only 24 years and was therefore completely unaware that he was a sufferer. as was mentioned earlier, there is 179 chance that the baby is fine, if however he/she is a sufferer you can then be reasured of thier likely survival or prepare as best as is possible for worst case scenario. its about preparation and knowledge goes a long way in my opinion to aiding this cause. sorry if i seem harsh, but nothing i could say could make this worse for you and amnio has the potential to relieve you for your worries for the rest of your pregnancy. lastly, my midwife (currently) had a client who tested 1 in 2 for downs. she opted not to have amnio and spent the entire pregnancy an emotional wreck. the child is now 2 and has absolutely nothing wrong with him xx

Original poster
SanAndreas · 07/07/2009 17:00

Thanks everyone, ive only just seen all the replies from yesterday.

I feel reassured by all your advice and experiences. I know my risk does actually seem quite low compared to others on here. I think im worried just cos with the other two dc's my risk was something like 1 in 1300.

Yesterday i sort of came to the decision that i would have the amnio just to know really as i will fret, i know i will, for the next few mths. However, today ive tried to put it in perpective and im now thinking maybe not as my risk of miscarriage is greater than risk of downs. Oh i dont know. im just going to have to wait and see what scan says and take it from there.

Thanks again. I will let you all know.x

OP posts:
sarah293 · 07/07/2009 17:02

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muddle78 · 07/07/2009 18:59

yes amnio only shows genetic stuff but if downs is confirmed they then scan baby's organs knowing specifically what they are looking for. my midwife told me this info :-)