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Devastated- positive neural tube defect test-update page 2 :)

post #1 of 50
Thread Starter 
I don't even know what this means. I know it's bad. I can't wrap my head around it because I am so upset. Are false positives positives common? What happens? My perinatologist can't see me for a week because she is in the hospital herself with an injury. I tried looking online, but decided it 's best if I don't. I'm stuck in my classroom administering a state test. This will be the longest 90 minutes of my life.

Someone, please share your experience- good or bad.

Erin
post #2 of 50
I don't know anything but I couldn't read and not reply! I hope it turns out to be a mistake.
post #3 of 50


What test did you have done? I know the quad screen has an inappropriately high false positive rate... I don't know tons about this, but I will hope for you that's what's going on here.
post #4 of 50
Thread Starter 
Quote:
Originally Posted by nuwavemomma View Post


What test did you have done? I know the quad screen has an inappropriately high false positive rate... I don't know tons about this, but I will hope for you that's what's going on here.
It was a bloodtest I had done Monday that only tested for neural tube defects because I had the first tri u/s screening. I can't get myself to weed through the info online to see if there is info on false positiive rates.
post #5 of 50
In low-risk pregnancies with no history of neural defects in the family, the false positive rate is HUGE! Like, not just a bad problem but HUGE! The rates vary according to source, but I've heard it's as high as 25% sometimes.

First trimester screenings are notoriously affected by a number of variables, including exactness of conception date. This is a case where I'd actually advise you to google "neural tube defect test false positive" when you have time because the information out there is very reassuring. You're about the billionth mama to experience this, unfortunately!

Hang in there! It's gonna be okay!
post #6 of 50
How many weeks are you? Was this bloodtest based on the u/s you already had or was it "routine?" Maybe someone can narrow down what test you had done exactly. I can go look up rates for you if we can determine what the test was...
post #7 of 50
Thread Starter 
Quote:
Originally Posted by nuwavemomma View Post
How many weeks are you? Was this bloodtest based on the u/s you already had or was it "routine?" Maybe someone can narrow down what test you had done exactly. I can go look up rates for you if we can determine what the test was...
My first tri test was normal so my OB ordered the nueral blood test. I don't think it tested for Downs or anything else. I'm 16w6d, but my OB says 17 something.
post #8 of 50
Quote:
Originally Posted by *jacksmama* View Post
My first tri test was normal so my OB ordered the nueral blood test. I don't think it tested for Downs or anything else. I'm 16w6d, but my OB says 17 something.
You had a normal u/s so the OB wanted to run another test? Huh?

Well you're in the window for the quad screen timing-wise. It would be worth calling and asking what exact test was just run. If that's it, as a PP has said, the false + rate is huge. HUGE. There's no way I'd sit on this for a week. Did they schedule another u/s or just a perinatologist appointment? This just doesn't quite add up honestly. My bet is on a false +.
post #9 of 50
post #10 of 50
I know how scary it sounds, but the PP's are right, false positives are HUGE! Very common. I think a positive gives you a 1/250 chance. And remember that they are only a screening test, meaning that for whatever reason the test thinks you may have a higher risk for this. In fact, the false positive rate is so high that I turned down this testing for myself, because I know how much I tend to stress and overreact to things. Had I gotten a false positive, I would have stressed and worried about it to no end, which isn't great for baby.

I think what usually happens at this point is that they offer you more conclusive tests to see if there really is a neural tube defect. These tests are a little more invasive, so they don't run them unless you get a positive on the screening.

I know how stressful this must be, I hope you can get some conclusive answers soon! Take care of yourself
post #11 of 50
Are you talking about a screening? This doesn't sound like a diagnostic test. Screenings are notorious for freaking people out. If they are telling you your risk factor is increased-- it really doesn't mean anything.

I showed to have a high risk of Downs due to a nuchal fold screen and my "advanced" age. My DDs are both completely normal.

Don't panic
post #12 of 50
Yes, scary but by NO MEANS definitive, not by a long shot.
post #13 of 50
It sounds like you had the spina bifida screening (15-20 weeks). A positive test usually means you scored more than 1/220 (that is what my doctor said was the cut off between positive and negative.) It does not mean your baby HAS a neural tube defect. At this point, your options are level 2 u/s and/or amnio.

I can see what you would be freaked out, but remember MANY people have positive screening results and have perfectly healthy babies. With DD, I declined the testing because I had heard so many horror stories about false positives.
post #14 of 50
Just wanted to say that I was told I had positive markers for just about everything during my 1st pregnancy. Scared me to death. I had a healthy baby girl at 42 weeks, 7.5lbs and strong as a horse. Not a thing wrong with her.

Second pregnancy I learned my lesson and declined the screening.

If you are really concerned, the level 2 ultrasound should answer your questions. But otherwise there are so many false positives...don't stress mama, your baby needs you calm and centered!
post #15 of 50
I had a triple screen with DS and it came back positive for spina bifida, which he does NOT have. (He does have a different birth defect that we knew about before he was born, but it had nothing to do with the false positive blood test though.)
post #16 of 50
Thread Starter 
Thanks for the encouraging words. I out a call into my doctor to find out excatly what my risk is (1/10 vs 1/250) and what defect was detected. It's the not knowing that's the hardest part. I have a level II u/s tomorrow and we meet with a genetic counselor before hand. I had a wonderful conversation with my m/w, who talked me off the ledge. Because I was told it was screening for only one thing (neural tube defects) I didn't know what test it was. My m/w said it was the AFP, which I know has a high false positive risk. My fear is that I am the first p atient of my OB's to have a positive. If there are so many false positives, then why hasn't she had any (that's Debbie Downer talking!)? Anyway, I am trying to block it out. All I know is that I have an elevated risk, but I don't even know what neural defect it's for. My OB simply said it's positive and I need more testing. My m/w explained it more thoroughly to me.

Thank you again. I left work (I'm a fifth grade teacher) and am now trying to relax. I scheduled a massage for tomorrow morning and am trying to get in for a facial too- two things I never do. My m/w's advice to to schedule pleasant things to do in the next 24 hours.

Erin
post #17 of 50
Quote:
Originally Posted by Theoretica View Post
Second pregnancy I learned my lesson and declined the screening.
Yep... we declined all screenings this time.... too many false positives.
post #18 of 50
I'm confused, the only blood test I'm aware of that screens for neural tube defects is MSAFP - maternal serum alpha fetoprotein, but it isn't a specific test for only neural tube defects, as the result can come back high, normal, or low, high is considered positive for neural tube defect, but also with several other things, though they are much less common. Low is associated with Down's and other chromosomal abnormalities - so that your midwife told you they were only testing for neural tube defects seems odd as usually the result for this test are combined with the results from neural fold testing to get a probability for Down's, though obviously if you already got a good result from that it would likely combine to be a good result.

You've been told you screened positive for neural tube defects, which means it was high, but unfortunately, without numbers, no one can tell you exactly what you chances of a false positive are, other than that it's definitely well above zero!

The ultrasound tomorrow should tell you more as ultrasound is the most reliable way to check for neural tube defects.

Good Luck!
post #19 of 50
Quote:
Originally Posted by *jacksmama* View Post
My fear is that I am the first p atient of my OB's to have a positive. If there are so many false positives, then why hasn't she had any (that's Debbie Downer talking!)?
Because she's incredibly lucky and it's just your luck to be the first! She's waaaaay overdue for some false positives, considering the odds----so you're just paying for that!

Good for you for scheduling pampering time. Enjoy it!
post #20 of 50
I hope that your ultrasound reassures you! The tech who did mine showed me very clearly how the baby's brain was developing just as expected and her spine was perfectly formed, fully covered by skin, etc. It does seem like a good tech can really lay the fears of anencephaly and spina bifida to rest.
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