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Old May 17th, 2011, 08:34 AM   1
akabenoit
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Down Syndrome blood test result...so ANGRY!


AAAAAAAHHH! Ladies, I need to vent. My midwife called yesterday to inform me that my blood test for Down syndrome came back positive/high risk...a one in 57 chance of having a baby born with it. As you can imagine, I freaked out. She quickly went on to say that 99.9% of the women with an elevated risk like mine go on to have perfectly normal babies and that I shouldn't worry. Excuse me? Shouldn't worry? Right. The kicker is that my 12 week scan was pefect. The doctor said everything looked great, normal nuchal fold, etc.

So, I am left feeling very confused and angry about the test results. I spent a lot of time researching the accuracy of the blood test, and as it turns out, it yeilds a ton of false positives. As a quick aside, my husband and I lost our first baby at 22 weeks last November due to a fluke issue that was not genetic and which we have a zero chance of happening again. I am livid that they recommended this blood test which more often than not is innacurate and then go on to tell me not to worry, that basically the results don't mean anything anyway. Why would they do this to someone who is already super paranoid about how successful this pregnancy is going to be? Why recommend a faulty test?

Both my husband and I are worried about whether or not we will need an amniocentisis done at 16 weeks to see if the baby really has Down syndrome. It comes with risks as well. I have to say, if I had known this blood test is pretty much BS I wouln't have had it done to begin with.

Sorry for the long rant, I just don't know what to do with myself. I can't stop worrying. Have any of you ladies shared a similar experience? Thanks for reading my crazyness :-)



 
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Old May 17th, 2011, 08:40 AM   2
creatingpeace
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Hey...sorry for the craziness you are going through. Congrats on a great scan. The reading/research I have done is the same as yours...my midwife said 38 percent have false positives...that is crazy!!!



 
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Old May 17th, 2011, 08:41 AM   3
truly_blessed
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I don't have experience sorry but am seriously thinking about not having the tests to avoid any additional stress.



 
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Old May 17th, 2011, 08:43 AM   4
lynnikins
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hun you dont "Need" to have the amnio if you dont want it i guess it depends how you feel about having a DS baby, for us it wouldnt change anything so i dont get the tests done caus im gonna love this baby no matter what for as long as i have the ability



 
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Old May 17th, 2011, 08:44 AM   5
pcake
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My sil had a high risk result, they had the test where the needle goes into ur tummy, which was negative, and baby was fine. Im so sorry for ur previous loss, Of course ur very paranoid about things. I had the combined screening too, and also read like you that the blood test isnt massively accurate, though luckily our results were low risk. I think about 70% accurate if i remember correctly, but apparently the nuchal fold is the most accurate way to tell, though not always. What was ur nt measurement? I have also read of ladies booking private scans at 20 weeks , so they can get all the markers for downs checked, possibly another option for u too.

Very sorry ur going through this xx



 
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Old May 17th, 2011, 08:47 AM   6
babybaillie
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sorry youve been upset by ur mw. Think u just need to sit down and talk with hubby and say would u be happy to have a child with downs. and take it from there. I didnt realise the blood test wasnt very accurate



 
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Old May 17th, 2011, 08:53 AM   7
Hansie
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no experience just lots of



 
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Old May 17th, 2011, 08:58 AM   8
Jamaris Mummy
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Hi hun so sorry to hear what u r goin through, may I ask what ur first baby's condition was? My partner and I too lost our first baby last yr- I got a high risk result from the blood tests and my chances for ds were one one one hundred and sixty four. After an amnio was performed our baby was diagnosed with a lethal chromosomal condition called triploidy and the pregnancy was partial molar, so we had to make the heartbreaking decision to stop the pregnancy as our baby had no chance of survival and my organs were beginning to shut down. I too am now on my 2nd pregnancy and go for the nt scan next Monday. I am petrified so can imagine the anguish u r going through. I guess my advice would be to try and prepare yourself for both sides of the coin and how it could go either way. My gp told me about the whole false positive scenario with my first and it didn't turn out to be the case for us but I hope it is for u Hun. All the very best and feel free to pm me anytime I will check back here to see how u r going. All the very best wishes being sent ur way. We were told the chances of the same condition affecting our 2nd baby are next to none also, but it doesn't make u worry any less does it? Thinking of you



 
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Old May 17th, 2011, 09:14 AM   9
akabenoit
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Thanks for all your support, I really appreciate it. They never told me what the measurment was exactly, but the doctor came in himself to review the scan and said it was perfect.

We lost our first little one to due what they called 'posterior urethral valve syndrome.' It is a blockage of the urethra that prevents amniotic fluid from forming around the baby and instead it builds up in the baby's abdomen. Eventually, our baby's umbilical cord was crushed and he didn't make it. It was absolutely heartbreaking. We had no idea until we went in for our gender scan and they couldn't find a heartbeat. We would have known sooner if they hadn't waited 6 weeks in between ultrasounds and our baby could have possibly been saved. The geneticist said she only sees this condition in boys and that they have no idea what causes it, but that it has never occured again in any subsequent pregnancies of any women, so that is something we don't have to worry will happen again.

Both the ultrasound and blood test for that pregnancy were normal for the Down sydrome risk, so I'm not sure what exactly about my blood has changed from that pregnancy to this one. And of course the midwife was totally clueless about explaining what could cause this kind of change between pregnancies.



 
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Old May 17th, 2011, 09:14 AM   10
farmerswifey
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I had the EXACT same experience with my first pregnancy!
My midwife told me on my mobile whilst I was at a party! ARGH! I had little experience at the time and no idea what I was in for so I went to speak to the head MW at the hospital. Now she said that I had a 1 in 50 chance of having DS baby - this is not something that concerned me or DH and we knew we would still have our baby no matter what! However - we opted to have the amnio for the reason that we could then know for sure and prepare ourselves for the outcome.

We understood the risk of 1% chance of miscarriage but I knew so little about DS that I decided to do this and enable myself to prepare.
Our results came back clear but it made me really angry that I went through it at all! I mean - the MW said to me...'1 in 50 isnt that bad and you will probably be fine - its low odds' to which i replied...'you have a one in a million chance of winning the lottery - do you buy a ticket every week?' THAT STUMPED HER!

My advise to you is this - if you are prepared to have a baby with DS then dont bother with the test! It is worrying - painful and stressful. You have to wait 3 weeks for results which will probably be fine - and if I had the time again I wouldnt take the risk of anything happening.
I regret having the test at all. The thing that made me most angry was the fact that the results came back and the wording was 'your baby is normal'. I reeled at this because I wondered what it would have said if the test was positive for DS??????

Just dont get talked into anything - make your own mind up - and MOST of all... dont worry!

Lots of love

xxx



 
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