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

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#1 of 50 Old 01-15-2009, 03:46 PM - Thread Starter
 
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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
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#2 of 50 Old 01-15-2009, 03:50 PM
 
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I don't know anything but I couldn't read and not reply! I hope it turns out to be a mistake.

~*Kristi*~
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#3 of 50 Old 01-15-2009, 04:01 PM
 
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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.

Vanessa - aspiring Traditional Foods momma of Graham & Margot
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#4 of 50 Old 01-15-2009, 04:11 PM - Thread Starter
 
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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.
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#5 of 50 Old 01-15-2009, 04:21 PM
 
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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!
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#6 of 50 Old 01-15-2009, 04:21 PM
 
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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...

Vanessa - aspiring Traditional Foods momma of Graham & Margot
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#7 of 50 Old 01-15-2009, 04:31 PM - Thread Starter
 
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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.
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#8 of 50 Old 01-15-2009, 04:54 PM
 
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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 +.

Vanessa - aspiring Traditional Foods momma of Graham & Margot
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#9 of 50 Old 01-15-2009, 05:00 PM
 
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#10 of 50 Old 01-15-2009, 05:31 PM
 
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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

~Erin~ totally in with Olivia! 5/31/09
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#11 of 50 Old 01-15-2009, 06:11 PM
 
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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
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#12 of 50 Old 01-15-2009, 06:36 PM
 
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Yes, scary but by NO MEANS definitive, not by a long shot.

If decomposition persists please see your necromancer.

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#13 of 50 Old 01-15-2009, 06:41 PM
 
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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.

mama to DD (7), DS (3.5), and another DS arriving in August!

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#14 of 50 Old 01-15-2009, 06:49 PM
 
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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!

GOOD moms let their kids lick the beaters. GREAT moms turn off the mixer first!
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#15 of 50 Old 01-15-2009, 06:50 PM
 
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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.)

Carly [29] + DH [27] + DS [9]

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#16 of 50 Old 01-15-2009, 06:58 PM - Thread Starter
 
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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
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#17 of 50 Old 01-15-2009, 07:10 PM
 
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Second pregnancy I learned my lesson and declined the screening.
Yep... we declined all screenings this time.... too many false positives.

Kristin- Wife to J, Mommy to B (11), M-S (8), and little J (4) and J&J (7 months)
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#18 of 50 Old 01-15-2009, 07:45 PM
 
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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!

Anne, Christian mummy to Nathanael 05/28/03, Ada 06/10/05, Grace 05/24/09
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#19 of 50 Old 01-15-2009, 07:49 PM
 
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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!
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#20 of 50 Old 01-15-2009, 07:52 PM
 
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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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#21 of 50 Old 01-15-2009, 08:12 PM
 
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I too had a high AFP result (potential neural tube defect indicator), but the detailed u/s was fine. I made the mistake of scouring the net looking for info, and it only made things worse. I had to wait 2 weeks for the u/s and I just about went crazy.

Although I did the triple screen, my results came in for each test separately, perhaps b/c they got an abnormal result on one they faxed it to my dr's office right away? Not sure and I never did ask...

Having the detailed u/s was a huge relief, and I know yours will be tomorrow too!
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#22 of 50 Old 01-15-2009, 10:23 PM
 
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Back when I was pg with DD in 2005, I had the quad screen done and it came back positive for AFP. I had a level II ultrasound and it turned out that the positive was from some sort of inconsequential (to the pg) placental bleed. She was born healthy- no neural tube defects. I know how nerve racking this wait must be for you. I had to wait 2.5 weeks between the positive and my level II U/S.

Heidi , wife to my DH , mama to Hope Isobel (4/3/06), Molly Grace (7/31/09): , furbaby Callie :
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#23 of 50 Old 01-15-2009, 10:28 PM
 
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Not much to add to the other posts, just wanted to offer

~ Colleen ~ Joyful Unschooling Pagan mama to hearts.gifenergy.gifsuperhero.gifjog.gif and babyf.gif
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#24 of 50 Old 01-15-2009, 10:36 PM
 
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Another mama here to say please don't worry yourself too much. I declined testing in both of my pregnancies, but my first ultrasound in my second pregnancy showed some markers that could be an indicator of a chromosomal disorder. We had to wait a week for the level 2 ultrasound (and were given the option of the amnio - NO THANKS!) and it was a very long week, waiting and not knowing. Everything turned out fine - level 2 showed all was well, and baby was born big and healthy, six days late and not a single thing wrong with him.

You'll be in lots of people's thoughts and prayers as you find out more. You'll soon be able to add yourself to the ranks of mamas who were frightened unnecessarily.

CPST ***I can help keep your child safe in the car. Ask me a car seat question!***
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#25 of 50 Old 01-15-2009, 10:38 PM
 
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Man, I am SO SORRY you're going through this. Not that it helps you, but I am SO GRATEFUL to have had a friend who informed me of the high rate of false positives on the AFP, so I skipped the test for my first pregnancy and will do the same this time around.

Seriously, your chances are SO SLIM. Go buy a lottery ticket, your chances are probably better there! :

Ali - Wife to Steve and mom to Zoe - age 7, and Ezra - 17 months (9/2009)
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#26 of 50 Old 01-15-2009, 10:49 PM
 
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My DD1 does have a NTD. I had an AFP and Amnio and level II ultrasound with her. NONE of these tests detected it.


Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#27 of 50 Old 01-16-2009, 04:30 AM
 
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I had a positive first trimester screening because of elevated hCG levels (sign of Down's Syndrome). I had to wait a week for a nuchal translucency u/s. My adjusted results were 1:413 (would have been 1:950 based on age alone). The genetic counselor told me that anything higher than 1:220 is considered "negative" or low risk so no further testing was advised. I will be receiving a level II u/s as well, but that is standard practice for my HCP. I am scheduled to get my second trimester screen (AFP only), but am a little worried about another positive. The most frustrating thing is that not a single person so far has been able to tell me possible reasons for elevated hCG (except fertility drugs which I have never taken).

I know it is hard to do, but really try not to worry too much.

Loving my DH and my two active little girls (9/06), (6/09). Anticipating a new bundle of joy (7/11).
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#28 of 50 Old 01-16-2009, 11:41 AM
 
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We'll be thinking about you today. I hope that everything goes well.
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#29 of 50 Old 01-16-2009, 12:06 PM
 
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We had an abnormality that showed up on an ultrasound and then had to wait 4 days to meet with the specialist. I agree that waiting is the hardest part. I also think that you are making the right choice by not researching anything until you know if there is an actual issue.
Lots of good and peaceful thoughts for you!
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#30 of 50 Old 01-16-2009, 07:08 PM
 
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bump

Married to my best friend, expecting #1 6/09. Little angel came early- 4/10/09, 2lbs 5oz. Lilah Grace:
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