AFP test came back positive..should I worry?

Princess32, I just posted a similar thread in the September due date about my recent experience with the AFP test. My Dr's first step was to refer me to a perinatal specialist who redid the AFP then did a Level II ultrasound. He said that an amnio would be the LAST resort. I have four friends (or friends of friends) who also tested positive for Downs and opted not to do the amnio because of the risks, and all of their babies were fine. Do you know if your numbers were low or high? They say low is a sign of Downs but not high numbers. Just a thought. I would retest first.
Mine came back positive for Spina Bifida, even after the Level II ultrasound. I'm sort of freaking out right now. I won't get the 2nd test results back until Tuesday.
Anyway, I would ask for a retest first. Not to scare you, but the risks of m/c is in 1 of 200 amnios (that is what my specialist told me today). Good luck! i will be thinking of you

Unfortunately... it is VERY common. :

I came up with the "positive" markers for Down's with DD (baby#1). We did the level II u/s and the Amnio. Came back negative for Down's. She was born on her due date... without Down's. Lots of stress for nothing. :

I talked with my primary OB later (not the one I had at the time of the testing) and he said that the AFP can be very accurate when given *during* the 17th week but ONLY during the 17th week. During week 16 or 18... its something like 85% likely to give a false "positive" and it is almost always the Down's markers that are off. My test was done at 18.6 weeks. : So of course it was off.

In hindsight we found out that the percentage of my having a miscarrage from the Amnio was greater than the chances that of a true postive Down's result from the Amnio. Many of the "markers" for Down's can be detected on a Level II u/s because the tech usually has a greater training on looking for the specifics regarding Down's. (again no guarantees, only an Amnio will give you that)

After having that scare with DD (baby#1) I haven't had the testing for my three other pregnancies. I don't fall into the typical range of concerns for Down's (oooh I'm just sooo old :eyerolls being in my mid-30's ) and it wouldn't change our decision to continue the pregnancies regardless.

Before you have an Amnio, you need to decide what your reasons for getting it would be. It isn't pleasant and there is a great risk. Would it change your decision on continuing the pregnancy? Would it give you the information to be prepared for a life with a child with Down's?

Try not to worry. I know that is hard to do.

Level 2 ultrasounds are accurate in detecting Down Syndrome about 50-60% of the time. Which means, unfortunately, that you can opt to use an ultrasound to look for soft markers, but the only ways to know 100% for certain are to have the baby or to have an amnio before the baby is born. There are risks to an amnio, but the "standard" risk of 1/200 or 1/400 miscarriages is not always true for every person performing the procedure. You can opt to find a perinatologist that performs a lot of amnios and has a better rate than that. It is a difficult and very personal decision.

I had a first trimester screening (supposed to be more accurate than the AFP, but a similar type of test) which gave me a high risk of Down Syndrome. I decided to have an amnio because I wanted to know 100% one way or the other. It was scary, but I'm glad I had it done. Most people here are geared towards lower interventions and more natural pregnancy and birth, so you won't find a lot of people here that think amnios are great, but in the end, it is up to you.

Most likely it is a false positive, the AFP is notorious for those. I hope everything works out for you. I know it is impossible, but try not to worry!

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Exactly what I'm thinkg.
I've never consented to the test because I fear a false positive.
What will you do with the info?
Just be stressed your entire pregnancy? Worry? etc...
IMO I wouldn't get the amnio, its too risky and very intervention.
It happend to my Aunt, the positive AFP and her DS was fine.

Hang in there mama

Ladies.. thank you so much for your responses. I TRULY appreciate them. I am calming down because of all the info that i have received on the AFP test.

To share a little bit more. I am 32 years old. My doctor told me that my chances of having a downs baby is pretty insignificant since i am in my early thirties. She said at age thirty five is when the chances increase, or thereafter. That comforts me some..

My reason for having the Amnio.. Well, I went in on Friday to get a level two done, and they canceled it! The nurse said that because I was scheduled to do the Amnio, there was no need for me to have the ultra sound done. She also said that when they do the amnio, they would do the ultra too.

You know, now that i am thinking, my sister who had my neice at twenty four, had the amnio done. I am not sure what her numbers were..as in if it was high or low numbers for downs.. My brother in law was also telling me that his ex wife took the test for sickle cell on one of his daughters.. Don't know.. maybe here where i live, they don't think of the test as being such a last resort?? Don't even know what the reasoning is behind tht..

To tell you the truth, I am scared of the test, because I hear it hurts, but also because of what I am now hearing about miscarriages. I think for me though, I HAVE to know as soon as possible, and I have to be one hundred percent sure of the results. I want to really know.. not a guesstimate as in the ultra two, not because i would decide not to carry, but because I want to be informed either way, so i can prepare myself.. I do not deal with stress well because of an illness that i have, so for me it is critical to know as soon as possible.

O ladies..thank you so much for all your support. Pray, meditate, send up good energy for me, that i may have a negative reading when the amnio is completed.

Princess

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i totally understand you need to know as soon as possible. i would ask your provider what the risk of miscarriage is just so you are more comfortable. make sure they give you the actual number not just "it is unlikely." i think it is one percent???

yes, i think this is pretty common. every provider i have seen wants to do genetic testing. if you decline they look at you like you are looney toons. my (former) midwife said if it comes back positive it is just a chance to take a closer look at the baby. i hope she doesnt mean amnio by that comment. but ya, lots of my friends get them. good luck with whatever you decide, but please ask about the miscarriage risk.

LouisLi,
You know, someone else told me that it was the same for her.. Just feeling a pinch when the needle goes in, but not extremely painful. I wonder if it hurts more when you tense up? For me, at this point, that is secondary (the pain). As you know, I NEED to KNOW.

By the way, does anyone know how soon you get the test results back from the Amnio?? I take mine on Friday. What isthe waiting period to get the results back?

Thank you ladies for all your support so far ,
Princess

When I was pregnant with my first child I was offered the AFP test by my doctor. I asked her if she thought I should have it. My younger half-brother has Down's, as does my aunt on my father's side. So basically, there are cases on both sides of the family. My doctor said that it was a personal choice and that there was no right or wrong way to go about it.

I asked her what she would do if she were me, not my doctor. She thought about it for a moment and said she wouldn't do it. Given my age - 19 at the time - there was a large potential for the test to show a 'false positive'. She said that also, since she knew I would birth my baby regardless of any potential special needs, she saw no need for me to possibly get a scare with the AFP test. An ultrasound at 20 weeks would detect any major issues anyway, and would give my dh and I ample time to prepare for our new arrival.

I've opted out of the AFP test in all three of my pregnancies. So far, I have two very healthy boys and am expecting what I hope to be another healthy baby. The AFP test has scared so many of my friends and nearly all of them have carried perfectly healthy babies to term, despite what the test said.

I wish you all the best, no matter what the outcome. Please let us know how things go

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See, the thing is, i hear the all the time (I'd have the baby no matter what). First of all, there are trisomies that are incompatable with life, and may mean the baby would be born with a huge array of medical problems and might suffer a great deal. obviously it would be a deeply personal and painful decision, but I know that some people like to know beforehand, or opt to terminate a pregnancy in these cases.

Another thing to think about is that babies born with Down Syndrome often have other complications, such as heart defects. This could potentially influence a person's decision on where to have the birth (home? hospital? hospital with a level 3 NICU?) or provide information when looking into a more detailed ultrasound to look for heart problems. Some birth defects, spina bifida for example can be opertaed on in utero or shortly after baby's birth, so it might be useful to know ahead of time.

And ultrasound does not always catch all major problems. It is usually able to detect spina bifida or anacephaley (sp?) but as I said before, detects about 50-60% of Down Syndrome cases.

To the OP: full amnio results generally take about 2 weeks. With us, the lab that was doing the incubation of the cells had a problem with their incubators, so it took a little over 3 weeks : We were SO GLAD we paid extra for the FISH results. We found out in 2 days that she would be a healthy baby girl.

I know of 2 people who's lost their baby to miscarriage the day after their amnio. Having gone through a miscarriage myself, there is no way I would do anything to risk loosing a baby, even if the baby did have down's syndrome. I know the risk of miscarriage from an amnio is probably low, but there is always the chance it will happen to you. My best friend was told that her baby probably had down's, due to testing and ultra sound (big head, etc.)....but he didn't have it, and he was fine. She did say that it was a lot of stress during the pregnancy, and I understand the need to know. I just want you to be aware of the risks of the amnio. I'm 37, and declined it.
I have a website that provides memorial items to parents who have lost a baby, so I deal with their grief on a daily basis. That's probably why I'm trying to caution you about it. I just hate to see anyone go through the pain of loosing a baby. Please just think about it, and maybe do a little more research about the risks. I do totally understand that you just have to know -one way or the other. My oldest boy has Asperger's syndrome, and it's killing me not knowing if I'm going to have to deal with that again with this next baby, but I'm trusting God not to give me more than I can handle.