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-   -   Down Syndrome Screening Question (http://www.justmommies.com/forums/f2038-2013-playroom/2632175-down-syndrome-screening-question.html)

alittlelost March 6th, 2013 07:07 AM

Down Syndrome Screening Question
Excuse me for crashing your board. I'm due in early august, and I needed to ask a question to mamas who recently completed their screening; I though your board would all be done by now and best able to answer my questions.

I had what is called "Integrated Screening". This includes an NT scan at 11-13 weeks and taking a sample of PAPP-A, then more blood work at 15-16 weeks for AFP, hCG, uE3, and IhA.

Five out of every 100 women who take the test receive a positive result and are considered "screen positive." Most women with screen positive results will not have a baby with Down Syndrome.

I realize some people opt out of the screening entirely, so this question is for the mamas who opted in. I can understand why some people wouldn't want to know, since it wouldn't change their feelings for the baby. My knowing wouldn't change my feelings for this baby either, but as I have 2 kids with Autism, I want to know if we have a child with DS on the way so we can prepare. Also, ZERO judgement from me regarding what anyone here would choose, re: having the test or not and re: what they would do if they're baby-to-be had DS.

As for me, my NT scan was fine. My blood work came back "positive" for Down Syndrome. A positive screening with THIS test does not mean the baby has DS, but rather that you are outside the low risk category. My risk is 1 in 195 chance. I know that's not too bad, but naturally I have questions. I was given the option of amnio (100%) or blood test (99%). I opted for the blood test, as I didn't want to risk my water breaking during the amnio. I wish I had asked more questions at the time about what part of my blood test increased my risks...

Here are my questions for mamas who got a "screen positive" and opted for further testing...

1) What were your odds for down syndrome?
2) What were you results from the further testing?
3) Did you have a lost or vanishing twin, and if so, how long before your 1st blood test did you lose your twin?

The last question I ask because I had a vanishing twin and I have heard that can affect results, but I don't know if that was the case for me because I lost the twin at 6ish weeks and had my first screening at 11 weeks. Also, in that case the increased risk would be from higher than normal HcG, and I don't know if higher than normal HcG is why I received a higher risk on my screening or not, because I didn't ask for the specifics :(

Thanks in advance for any responses you ladies can offer.

navywifey2003 March 6th, 2013 07:55 AM

Re: Down Syndrome Screening Question
I know several of our moms did the blood test (harmony) as opposed to the other testing, so I hope they can answer your questions. I do know that the AFP has an extreme high false positive rate and I believe when twins are present it makes it less accurate. I hope others can answer your questions, we opted out of these tests.

alittlelost March 6th, 2013 07:58 AM

Re: Down Syndrome Screening Question
Thank you <3 Harmony is the test they gave me after my AFP got the positive screen. I admit I was a bit like . . . why not just use that one in the first place?!

navywifey2003 March 6th, 2013 08:48 AM

Re: Down Syndrome Screening Question
It's because that test is newer and I have seen at least here on this board it's not covered by insurance because its new.

alittlelost March 6th, 2013 08:55 AM

Re: Down Syndrome Screening Question
Ah, that makes more sense then. I wish I had asked the doctor yesterday about the vanishing twin being a factor. I mean, I know it could have been int he first test, but since I lost the twin months ago, I would hope it's not a factor anymore, but I didn't think to ask, and I think they keep forgetting I lost a twin. (I think because I am outsourced to them. My primary care is from a midwife; they just do ultrasounds and blood work).

MerinSun March 6th, 2013 09:13 AM

Re: Down Syndrome Screening Question
I tested positive and I think my odds were 32 out of 100 for testing positive with further testing.

I had a detailed ultrasound to look at physical structures (though the biggest one like the nose we could not see because baby was being stubborn). Then I did the blood test. I was adamant that I did not take any risks with complicating the pregnancy using amnio centesis.

I opted for the harmony blood test and it came back negative :) I did not have a vanishing twin. My midwife said that why I got a positive result was because we didn't know the exact date of conception and have been making very good educated guesses. Even being off by a few days can alter the results.

I think that if you get an ultrasound that shows the nose/face and do Harmony you will be able to get your answer with just as much accuracy as the amnio testing.

alittlelost March 6th, 2013 09:30 AM

Re: Down Syndrome Screening Question
Thanks so much for the feedback!

ashleykathleen March 6th, 2013 11:03 AM

Re: Down Syndrome Screening Question
I had all the u/s and bloodwork screening done but I may not be much help...

My tests all came back negative. I can't remember my exact numbers but they were ridiculously low (even lower than my risk based on age alone- I'm 26). It was like 1:3,000 or something close to that.

Krisnina March 6th, 2013 11:10 AM

Re: Down Syndrome Screening Question
I'm jumping in for from the July DDC. I originally was given a number of a 1:14 chance of downs. Since I was 35 at the time, I had the option to take the maternit21 test at the same time as the first trimester screening. This test came back negative for t21,18,16. My doctor told me not to worry since the t21 test was very accurate, but she sent me to the hi risk doctor anyway. There I found out I have super low papp-a levels. I've had two ultrasounds with a hi risk doctor. The first two were normal except the doctor couldn't get a good look at the heart. My next ultrasound with him is on Monday. I am hoping we are all clear of markers. I did refuse the second trimester screening. I had to many numbers already scaring the crap out of me, so I didn't need anymore. I figured I would wait for the ultrasounds-which so far have been normal. I have also refused an amnio. I don't plan to terminate and I just think the amnio is too risky for me. I will admit I am terrified that there is something wrong with this baby, but I am trying to remain positive since even 1:14 - my odds are still kind of good.....If you have any questions for me, just PM me.

Sorry Juners for taking over your board :)

navywifey2003 March 6th, 2013 11:17 AM

Re: Down Syndrome Screening Question
Get out of here haha just kidding.

We are all here to help each other :)

alittlelost March 6th, 2013 11:32 AM

Re: Down Syndrome Screening Question
Thanks Krisnina for responding! Please update when you find out more. SO glad the ultrasounds have been good for you <3

Kim3 March 6th, 2013 01:42 PM

Re: Down Syndrome Screening Question
I had the Harmony test. Insurance covered it due to my age of 39. I did not do screening with my other two children when I was 29 or 30. The risk of the false positive worrying me prevented me from the test. However, I was told that the Harmony is 99.5% accurate. After 10 longs days I was told the results of 1/10,000 risk which is basically everything is good. The test still technically gives a "risk range". However, the range is extremely telling. I wish all people were offered this test first as it is reliable. Hoping you get a great Harmony result.

8miraclez March 8th, 2013 08:33 PM

Re: Down Syndrome Screening Question
I'll probably be no help but I actually opted out of the nt and afp because exact conception date was questioned and they said it would give a false positive. I've heard a vanishing twin will also give a false positive. I was just going to get the maternit21 test done instead but never got the chance. At 15wks they found birth defects and at 17wks I ended up getting an amnio done. In my case, the afp would have given a false positive for downs because my baby has a spina bifida, but the maternit21 test wouldn't have. The amnio came back completely normal as well.

Kim3 March 9th, 2013 04:00 AM

Re: Down Syndrome Screening Question
alittlelot - just wanted to let you know that we are thinking of you. I know those 10 days waiting for the Harmony test can take FOREVER. Hoping all comes back with great results for you and your little girl.

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