Positve score for Open Neural Tube Defects (AFP)

jenluvsushi

Hi....anyone else get a positive result for this test? I did a couple days ago and I am terrified. I scored a 2.5 MoMs which is the exact cut off. At 2.49 MoMs, I would be considered negative which is just my luck. I went in for an in depth ultrasound yesterday and the baby looks great so far but she is still pretty little so I need to come back in three weeks to check again since they can see the baby better closer to 20 weeks. They are also going to monitor me more closely since this can also indicate placental issues or preeclampsia (which I have a history of although I have never had a high AFP before).

So far though they are ruling out spina bifida and any abdominal wall defects (definitely no anencephaly either). My genetic counselor said that with a score like this she would be shocked if there was something actually wrong and these tests have high rates of false positives. This did make me feel a little better but I am still so worried!

This pregnancy has been so drama filled already.....I so wish I could have a margarita!!!!

_ylime_

I am so sorry you have to go through this - but that is great news that the ultrasound went well!

I am 33, well almost 34 weeks along and I had a VERY high AFP.... we are talking in the 4 range here, so well above the cutoff. Despite that everything is going great! Our initial L2 ultrasound went well and they ruled out anything significant in terms of open neural tube defects, but I have continued to go for L2 ultrasounds monthly, and now weekly. They were concerned about possible problems with the placenta and her growth... but the 'lil munchkin is doing great.

We are now starting weekly non-stress tests and biophysical profiles to monitor her in these last couple weeks.

So... moral of the story... they may do a ton of testing, but don't let it stress you, because most likely everything will be 100% OK (plus you get to see the 'lil one a ton so there is that peace of mind).

I hope this helps ease your mind.
xx

nan199678

I'm sorry that you're dealing w stress in your pregnancy. I don't have any personal experience w the test myself but I'm happy to hear the counselor feels positive.

I hear ya on the margarita!

_ylime_

Forgot to add: feel free to PM me if you have any questions as things move along... :flowerforyou: I 100% understand the stress having been going through it, and I am more than happy to provide more info. on what you can expect if that would help ease your mind! Remember they are just being incredibly precautionary, and the additional tests do not (at all) indicate there is an issue (I have really had to keep this in my mind). :flowerforyou:

bed2883

Hi,

I had the same score as you. Nothing was seen on her ultrasound. I came back two weeks later for another check and she still looked great. They were worried that maybe my elevated AFP indicated possible pre-term labor as I went to into pre-term labor at 31 weeks with my second child. So, I was being seen every two weeks and having my cervix check. I'm 32+ weeks now and baby girl is doing well. They spaced my visits back out because everything has been good.

I understand the stress and the worry! And while it's possible something could be off it's also just as possible that your little one is going to be perfectly healthy and you'll have a good pregnancy. :-)

jenluvsushi

thank you all so much for the responses.....I seriously feel like I'm on an emotional roller coaster! This pregnancy has been so hard. I bled from the day before my BFP up until week 7 (spotting and one big bleed) so I have been in constant fear of another miscarriage and now this. I bet the bleeding had something to do with my score. I also have a thickened placenta which scares me too as it can mean all kinds of scary things....or nothing at all. Here is to healthy baby girls for all of us!!!! :flowerforyou:

michelleepotter

*HUGS*

Another woman I know (from another board) recently went through something similar. She was told that her test results were "positive" for Down Syndrome. After a lot more testing, worry, and stress, it now appears that her baby is just fine.

IMO, the terms "positive" and "negative" for these types of tests are very misleading. It sounds like something *is* or *isn't* wrong, when really the numbers are just a measurement of the *possibility* that something is wrong. And even when the result is "positive," the chances are still pretty low. For example, my friend on the other board found out that her "positive" result translated to an approximately 2% chance of Down Syndrome.

Basically, try to keep it in perspective. Ask your doctor what the statistical likelihood is that your baby has or will experience the problems they are testing for. And try to relax. It sounds like you're not at high risk, and stressing out is not going to help anyone.

dandelyon

I never do that test so doctors usually find something else to ominously harp on. I'm sorry, I'm not making light of it. I believe there is such a thing as too much information and unfortunately doctors don't always know what to make of all of it. The regular OB sounds the alarm, I get to the high risk specialist and they are laughing, cracking jokes, and then offhandedly say "by the way, everything's fine" on their way out the door. It is so frustrating. It makes me want to skip prenatal care entirely and just show up pushing. Kidding...

However, my experience has led me to belie e that when something's truly wrong, it shows up in more than one way. An enlarged kidney or a brain cyst or a high score ona test by itself means nothing.

jenluvsushi

I am starting to wish that I would have skipped it too. I was worried because of my age (38) so I got tested for everything under the sun. It's funny though....I passed everything with flying colors and the only one that was funky was the AFP....which is the only one NOT influenced by advanced maternal age. UGH!

lisapr123

I am starting to wish that I would have skipped it too. I was worried because of my age (38) so I got tested for everything under the sun. It's funny though....I passed everything with flying colors and the only one that was funky was the AFP....which is the only one NOT influenced by advanced maternal age. UGH!

I'm 35 and despite the fact that my MD insists I am NOT of "advanced maternal age" he still makes me have every stupid test. The kicker is....I had to use donor eggs that were 1--screened for all these things after they were fertilized and 2--are from a 25 year old. Sometimes I think we get too much medical care and it turns all of us into basket cases!!

ldrosophila

I was just reading about the AFP today because it looks like I might have a small lapse in my insurance. Seems there are a ton of false positive so many that I'm questioning why bother getting it.

Lots of prayers, but I'm sure it will be just a false positive. Make sure they have your correct weight and age on the test I was reading a small mistake like that can influence the test.

miranda_mom

Is this measuring the nuchal fold? I just had that test on Monday. The doctor told us "I start to get a little concerned at 2.5. I get concerned at 3.5". So, if that's the case, you are literally right on the cutoffs. I've heard lots of false positives with this test as well. Did they do a blood draw? Mine was 1.5 but they are doing two blood draws as well and I won't know my official "score" until all three things are known (not til about 16 weeks I think). Maybe the bloodwork results will be more reassuring for you?

jenluvsushi

Is this measuring the nuchal fold? I just had that test on Monday. The doctor told us "I start to get a little concerned at 2.5. I get concerned at 3.5". So, if that's the case, you are literally right on the cutoffs. I've heard lots of false positives with this test as well. Did they do a blood draw? Mine was 1.5 but they are doing two blood draws as well and I won't know my official "score" until all three things are known (not til about 16 weeks I think). Maybe the bloodwork results will be more reassuring for you?

No, the AFP is a protein that the baby secretes into the amniotic fluid. If it is above a 2.5 MoM, it is considered a positive screen which indicates a higher risk for Open Neural Tube Defects (ONTD). Babies that have ONTD have high AFP scores because they secrete more of this protein as they usually have a hole in either their spine, the skull or the abdomen (spina bifida is common for this). The nuchal fold is a measurement that they take as a thickened neck fold is indicative of chromosomal issues like downs syndrome. The AFP is through a blood test that is taken in the second trimester quad screen. Nuchal folds are only seen through ultrasound.

Erinthebodo

I am so sorry to hear this- I am sure that it is HUGELY stressful. I am sending you happy and healthy thoughts!

miranda_mom

Is this measuring the nuchal fold? I just had that test on Monday. The doctor told us "I start to get a little concerned at 2.5. I get concerned at 3.5". So, if that's the case, you are literally right on the cutoffs. I've heard lots of false positives with this test as well. Did they do a blood draw? Mine was 1.5 but they are doing two blood draws as well and I won't know my official "score" until all three things are known (not til about 16 weeks I think). Maybe the bloodwork results will be more reassuring for you?

No, the AFP is a protein that the baby secretes into the amniotic fluid. If it is above a 2.5 MoM, it is considered a positive screen which indicates a higher risk for Open Neural Tube Defects (ONTD). Babies that have ONTD have high AFP scores because they secrete more of this protein as they usually have a hole in either their spine, the skull or the abdomen (spina bifida is common for this). The nuchal fold is a measurement that they take as a thickened neck fold is indicative of chromosomal issues like downs syndrome. The AFP is through a blood test that is taken in the second trimester quad screen. Nuchal folds are only seen through ultrasound.

Gotcha, okay. (Isn't that weird that the two tests seem to have the same number as a cutoff? What a weird coincidence).
Anyway, I work with kids who have spina bifida and there is a wide range of symptoms and how much a child is affected. So even if you do really have that (and you probably don't), there's a lot more questions going on as far as how it will affect everything. Good luck!