AFP Prenatal Test
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My husband and I are really freaked out right now. We just got
a call from the nurse practicioner at my Dr.'s office. The
results from the AFP test came back positive. The normal cut
off is at 2.5 and mine was at a 2.61, according to her this is
really slight and we should not be that concerned. Still,
hearing anything is going wrong still scares us to no end. I
tried to schedule an appointment for the expanded AFP testing
and ultrasound, but could not find any for the same week. I
could only find one for next week. To compound the feeling of
helplessness, I called and left 3 messages for the Dr., nurse
practicioner, and physician's assistant (on 3 separate days) to
find out if this was an emergency and I needed to get an
appointment for this same week. I have yet to hear from them.
Anyone else out there with similar problems/experiences?
My prior experience with sudden and urgent health problems, with
a differnt doctor, is that he will sit with you in the exam room
and call around to find an available appointment for that same
day or next.
Is this common for AFP testing? HELP!
I'm sorry to hear about your afp results but there is a fairly
high rate of false positives as I understand. My afp test came
back high my first pregnancy but I was sent into an ultrasound
that day. You should really get in touch with someone to get
an ultrasound sooner. The anxiety of not knowing and fearing
the worst should not be something you have to endure for that
long. I felt like I couldn't breathe when I got the results
and wrote the whole pregnancy off right there. As it turned
out my little one was fine and was in fact two little ones
which was the reason for my elevated reading. Don't take no
for an answer and I hope you can find some peace in knowing
that there is a good chance that it is just a false positive.
Best of luck,
You have not been given enough information, first of all. The
AFP test screens for several things, which can generally be
categorized as either neural tube defects (e.g., spina bifida,
anencephaly), or chromosomal defects (e.g., Down syndrome). You
need to know in which category your results came back with an
elevated risk, because if you want to have any further testing
done, your best options are different for different things.
Second and very importantly, the AFP is a screening test, not a
diagnostic test. What this means is that it can give you an
idea of the *risk* that your baby has a given condition, but it
cannot tell you *whether* your baby has that condition. ''False
positive'' results (where the AFP showed an elevated risk, but
the baby is entirely normal and healthy) are very common.
Given your anxiety about this, your next step should be an
appointment with a ''genetic counselor''. This is a person who
can explain the meaning of your results to you and describe your
options for follow-up tests. No, this isn't an emergency,
although IF you do choose to have an amnio, for example, you may
need an appointment relatively quickly depending what week of
your pregnancy you are in now.
Best of luck to you!
I'm sure you are going to get a gazillion responses to this.
My AFP test also came back with elevated levels and I was told
we had an increased risk for a baby with Down Syndrome. I felt
so much pressure to take that silly blood test. I had decided
against it, then after we saw the baby on the ultrasound for the
first time, I was so high off of feeling happy that I said, ah,
let's just do it. I think that was a huge mistake and I'd never
take it again in future pregnancies. The false positives are so
incredibly high. And the negatives do not necessarily mean the
baby is ''healthy'', either. Anyway, we said no to the level 2
ultrasound and/or amnio. At every doctor's visit (actually, I
saw a midwife up until I was 2 weeks overdue), we were asked why
we declined further testing and basically we! re pressured into
feeling so nervous. My answer was always, what's the point? We
would never end the pregnancy due to a birth defect, so why the
unnecessary intervention? (Amnio's are certainly not risk free,
as I'm sure you know- if not, do some research.) My husband and
I know that with or without the AFP test to detect, we have the
chance of having a baby born with a birth defect. My father (an
MD) gave me the best advice, stop taking tests and start
enjoying pregnancy and preparing for a new baby. I pass that
advice along. We now have a 9 month old, perfectly healthy baby
girl. You will too!
Stop Worrying, Start Enjoying!
My advice to you is relax and take a deep breath. As I recall
from the research I did when I was first pregnant, the AFP test
is very inaccurate -- that for the vast majority of women who
receive a positi! ve, there are actually very few real problems.
I've had several friends who got a positive result from an AFP,
were worried sick for weeks while they got an amnio, then waited
for the results, to finally find out that all was well. Which
is probably why your doctor is being so blase about the whole
My heart really goes out to you. We had an AFP test come back
with a ''false positive'' (thank god) for DS so i understand
the stress and pain you're going through right now. I'm so
angry that so many of us have to go through this time and time
again. I'm sure you're aware that MANY MANY AFP tests are
inaccurate. My ob's RN phoned to tell me that the test
came back positive and that they had arranged for my husband
and i to go to Alta Bates to speak to a genetic counsellor,
have an ultra sound and (if we decided) an amnio. I was told
on Tuesday and i only had! to wait 2 days for my appointment.
I'm amazed that your DR/OB has left it to you schedule
appointments at a time of immense stress and worry, and have
failed to return your messages. Sorry to hear that. To address
you question - is this common? All i can go on is my own
experience and my OB's office arranged everything for me while
Dr Levinsky (my terrific OB)returned my calls herself when i
had any questions. i could be wrong but i'd have thought this
is standard practice.
I'm sure this will all be for nothing but try to keep busy
these next two weeks or so while you have to wait. As i say,
we went through the same thing and we now have a healthy baby
boy. i decided to have an amnio despite the risks involved and
the staff at Alta Bates were terrific. Good luck :)
I was told my AFP screening test came back with elevated levels
of HCG hormone. The doctor said I will need careful monitoring
throughout my pregnancy with ultrasounds and heart monitoring as
this can indicate a possibility of lagging fetal growth (which
could necessitate a pre-term delivery), placental abnormality or
toxemia. Has anyone out there had this diagnosis with any of
these outcomes? What has it ment for the health of your
pregnancy and child? Any specific action I should take? And how
do I calm the worry?
1) A great acupuncturist, while it can eat up just about your whole life to do
this, it is the best way to prepare. Angela Wu in S.F. has a practice committed
to helping with all kinds of infertility problems, including for your husband.
Very intensive but that is why people go to her.
2) A support group is essential. Look up Fortility on the web or join something
locally if you have time. The studies that were done at Harvard also insist that
some form of relaxation practice along with a support group are part of a
3) Consider ovum donation or adoption. No one needs a family more than a
child without parents.
4) Consider IVF after at least 6-8 months of acupuncture.
I had a very high hcg test during pregnancy which turned out to
be indicative of all 3 of those conditions you listed-
preclampsia, placenta problem, and fetal growth issues. I did
have a premature baby who spent quite a while in the hospital
and who is now 3 years old and basically ''normal''. Get a good
Dr.- Dr. Maier (kaiser walnut creek) is great. Take it easy- I
got put on bedrest at 22 weeks and otherwise there weren't any
magic cures. Good luck! and feel free to write with any more
questions or if you need support (by the way I had a lot of
bleeding the whole time during the pregnancy).
I had the same diagnosis with my first pregnancy, and I
ended up having a perfectly healthy baby girl exactly on my
due date. So you may just have high hormone levels (for
me, this coincided with horrible morning sickness). I had
ultrasounds the last eight weeks of the pregnancy--it was
nice to see the baby moving around, however, I think it was
completely unnecessary. Try to remember that some of
these tests, the AFP in particular, come up with markers that
usually don't mean much in the end. Best wishes for your
another high HCG'er
I had the same thing with my pregnancy and from 32 weeks had to
make weekly trips to the hospital for additional testing. One
test (NST or non-stress test) looked at the baby's activity
level and heartbeat and the other was an ultrasound that
measured the level of amniotic fluid. They usually took about 90
mins to 2 hours including waiting time. I looked forward to the
tests as a way to connect with the baby and make sure she was
doing well. The tests never uncovered anything serious, though
one time I was told that the amniotic fluid was low and that I
needed to increase fluids and get more rest.
Increased HCG levels in early pregnancy can be associated with
more problems later, including losing a baby. But, from what I
was told, this is only a *slightly* elevated risk that the
testing is trying to negate. Don't worry about it too much
because most likely everything is going to be fine. In my case,
I ended up having a completely healthy, normal weight baby girl
at 38.5 weeks.
Been there before and everything was okay
My HCG levels were also found to be elevated when I took the AFP,
and I was told that I might need to be monitored more closely as
a result. It turned out that the doc who did my amnio authored a
large study on this same topic just a couple of years ago, so I
asked him about it. (David Walton at Kaiser, study was published
in the NEJM, I believe.) His conclusions were that while there is
a slightly elevated risk of complications (low birthweight,
stillbirth) associated with high HCG, it's not considered any
more statistically significant than other risk factors (being a
member of certain ethnic groups, for example). His opinion was
that as long the pregnancy was progressing normally, there was no
need for high risk treatment. I'm almost 31 weeks now and so far
My research at the time repeatedly cited this study as the
current wisdom on the topic, so I've chosen to not stress unduly
about it. I'm also not convinced that heavy monitoring is of
actual benefit to an otherwise low-risk pregnancy. (You should be
watched for toxemia and fetal growth regardless, but that goes
for any pregnancy!)
Best of luck to you.
I'm very stressed and nervous - I'm on my 2nd pregnancy and just
got elevated AFP test results back. It looks like there's risk
for Down Syndrome. I was also diagnosed at the ultrasound with a
Choriod Plexus Cyst in the baby's brain, which in very rare cases
is indicative of Down Syndrome. I have an amnio coming up to find
out for sure, but the results take weeks to come back.
What I'm hoping for is some support from other parents out there
who have had these kinds of scares and (hopefully) have had
everything turn out OK. I cannot sleep at night worrying and
wondering about this. Does this happen often? Do false positives
happen all that frequently? Even with a secondary 'soft' marker?
We have no family history of any birth abnormalities and I'm
going nuts trying to figure out what kind of changes this will
bring to our lives if my fears turn out to be true.
I went through this with my second pregnancy with the nuchal screen
test and another soft marker for Down Syndrome. I'm sure you know the
AFP is known for many false positives. In our case everything
turned out fine but the wait was agonizing. Things that helped were
support from key people, we told close friends who would listen and
understood how important this was. Having a project to work on...I
organized my sons soccer team while waiting for the results. Something
fairly mindless but involving ... I also researched Down syndrome some,
enough to try to make a preliminary decision that we would continue the
pregnancy if that were the case, though I'm not sure this is something
that would work for everyone it helped me to feel that I could cope with
the worst case if it came to that. My husband and I had some talks about
what it would be like to raise such a child. However my gut feeling was
that the baby was ok and I decided to focus on that as much as I could,
really thinking loving, positive thoughts helped me, as new-agey as it
all the best
I'm sorry about your AFP results. I know how devastating this
preliminary result can be, having experienced this just a few
months ago. I was told that my risk for DS, based on my AFP
score was ''greater than 1 in 10''...more specfically, higher
than that of a 50 year old woman. The medical professionals who
interacted with me prepared me for the worst case scenario
based on my specific test results. I was 31 at the time.
Thankfully, the Amnio showed no genetic defects whatsoever,
which ruled out DS.
But the few weeks of waiting was extremeley difficult. A lot of
crying a lot of breaking down. Here is my advice
1) when going for your amnio, ask for the ''fish'' (sp) test
which costs an additional $200. While the amnio tests all
genetic markers, the fish tests only downs and takes only 3-4
days so you get results for the specific concern sooner. This
doesn't rule out DS caused by trisomy...or other genetic
defects so you still have to wait for the amnio results. But
the results from the fish test is highly indicative of the
2) I also told most of my family and many of my friends. I felt
I needed a lot of support, and mostly, a lot of prayers. I
attribute the final results to prayers. Unfortunately, I had a
sister who was opposed to terminating pregnancies under any
circumstances, so you have to be careful to get support from
people who will not voice personal opinions on what you should
do. this adds another level of stress that is unbelievably
difficult to bear. (Whatever you choose to do is right for
3) My husband and I discussed at great length what we would do
in the event the results showed DS. We researched DS on the
internet and learned as much as we could about it. In other
words we prepared for the worse but prayed for a healthy child.
It is understandable to be depressed, concerned and anxious.
Get as much support as you can, and allow yourself to cry and
to express your sadness for the necessary catharcic release.
And do pray and ask for prayers from your loved ones. I will
keep you in my prayers. Feel free to email me for any reason.
Hello. I am sorry for your anxiety and have been in your shoes.
I also received a false positive high risk for Down's Syndrome
AFP result last year while pregnant. I participated in the
FASTER Trial (University of Colorado). I was a nervous wreck
while waiting for the amnio results and could barely function
out of fear. I was thrilled to find out that the chromosomal
analysis was normal (and that I was having a girl, who is
absolutely perfect). I have a few friends who also got a false
positive and in every case, they were having a girl. Maybe it's
something about those girl hormones. The actual probability of
anything actually being wrong is quite small. Hang in there and
There is a way to get results of the amnio quickly (2 days). I
don't remember the name of the test exactly, but ask your OB
about the FISH procedure. Basically, they take one extra tube
of amniotic fluid (no additional needle pricks required) and
send it to a different lab that performs a procedure that is
much quicker although can only rule out something like 99% of
the Downs cases. They can still send another tube to do the
regular amnio analysis.
Please try not to lose sleep over your AFP result. The AFP is
just a screening test that allows the doctors to positively rule
out some risks for some babies....its not an indicator that
other babies are at increased risk. There's no ''positive'',
only the absence of an absolute ''negative''. The cysts and
soft markers you mentioned can also appear fairly
frequently without any consequences. For some of us (40+)
there was no AFP, because there was statisticallly no
chance of it comng back ''normal''.
You might find tremendous comfort in visiting the pregnancy
messageboards at iVillage.com. Not only is there a board
for women awaiting test results, but for those expecting in
the same month as you, or almost anything you can think of.
Especially with the Expecting Club boards there is a lovely
sense of community that continues, giving you access to a
huge well of peer support and information that can continue
for years to come. Good luck, hope you get some sleep
I did get a positive AFP test back indicating that my daughter
had down's syndrome. My doctor left a message on my answering
machine at 445 on Friday, of course not able to talk to her
about it till Monday and because I was undergoing fertility
treatments (so I knew the exactly when I concieved), already had
an ultrasound early on and knew there was only one baby in
there, I was lead to believe the chances of her having down's
was about 1 in 5. It took about 2 weeks to find out everything
was okay. It was an awful time and I really feel your pain. I
do know that the test is 99% inaccurate, giving false positives
and I wouldn't be surprised if you get an overwhelming response
from women who have had this test come back positive only to
give birth to a healthy baby, as I did. I personally think it's
a terrible test, indicitive of the impersonal medical profession
that for some reason thinks a 99% false positive rate on a
prenatal test has no negative impact on all the families that
have to endure this kind of news, almost always for no reason.
I'm still angry about it and my daughter is over a year old. I
really wish the best for you. I have no great advice on how to
get through this while you're waiting, I too was a mess, I just
wanted you to know there are alot of us out there who have been
where you are. Take Care
I too had AFP results that indicated a worrisome risk of Downs'
Syndrome (my risk was greater than 1-in-10). An amnio later
revealed that I am carrying a healthy baby girl. My strongest
recommendation is to pay the roughly $200 to have a FISH analysis
run, which will give you results in only 2 days. This saved me
many sleepless nights. The medical care professionals didn't
offer this test, rather I had to ask for it (and pay for it).
The FISH results are followed about 2 weeks later by the
conventional analysis results. The FISH results are very
rarely wrong, but are not considered as definitive as those
from the conventional analysis.
I feel for you...we had the exact same thing five years ago
AFP results suggesting elevated Down's risk plus cysts in the
brain showing up in ultrasound. My five year daughter was born
completely normal and is now as healthy and smart as a whip.
It was very scary at the time, though, especially because we
ultimately declined the amnio, feeling that maybe we could live
with Down syndrome if that's what nature handed us (and I was
worried about miscarriage risks of the amnio). My OB didn't warn
me (and probably nor yours you) about the huge number of false
positives that show up in AFP, nor was she good at interpreting
the risk based on the results. The ultrasound technician who
found the cysts didn't seem to know much about what they meant
other than a correlation with genetic troubles. Eventually we
were refered to a compassionate genetic counsellor and doctor who
explained the high incidence of false positives, and explained
the ''elevated risk'' of Down's was more like 1 in 100. Also, she
told us that actually the most recent research shows the cysts
regularly form in normal babies and receed but were correlated
with genetic problems when they were first detected only a few
years before most likely because people with higher chances of
genetic problems (eg, because of age or family history) were
being examined much more often by ultasound. Don't worry! I
suspect your baby is fine! We decided to decline AFP tests in
My situation won't apply directly to your case because you have
already decided to have amnio, and because we won't know until
our baby is born in a few months if he or she has Downs, but it
may be of interest to others.
I'm 34, and my AFP showed about a 1/100 risk of Downs. Genetic
counseling explained that the ultrasound most often couldn't
detect Downs, but occasionally there are indications. We were
told a totally clear ultrasound would only raise our odds to
1/115 or so. We decided to only have amnio if ultrasound showed
futher cause for concern, which it did not.
The friends who we shared this with who are also medical
professionals tended to assume that we declined amnio because we
had already decided we'd keep the baby no matter what. But that
wasn't it - we didn't go through the process of making that hard
decision, and we would like to know if our baby has Downs or not.
We just felt the risk of miscarriage with amnio was too high
(between 1/200-1/300 at this clinic). It wasn't a strictly
rational choice obviously the chance of Downs for us is higher
than the chance of miscarriage, but somehow 1/100 for Downs felt
low, but 1/200 for losing the baby seemed really high! It just
felt wrong to invade the womb with a needle unless it seemed
really likely there was a problem.
When we walked out of the clinic having made our choice and
having seen the ultrasound, we had mixed feelings I felt about
2/3 glad we'd done what we'd done, and 1/3 regretting passing up
the chance to know for sure. My husband felt more like 50/50.
So now we're waiting for the birth, and after the first few
weeks, the stress of it faded and we rarely think about the
chance we could have a baby with Downs. I haven't done research
on what having a Downs baby would be like, because I still think
the chance is very small, and I don't want to make myself
anxious. If anyone who has been in my shoes has a strong
recommendation that we should prepare, I'd be interested to know.
When we had to make our choice about amnio I would have liked to
have seen stories from more people like us who chose not to
have amnio not because they knew they'd keep the baby no matter
what, but because they were uncomfortable with the risk. But I
saw little of this out there - that is why I thought I'd post my
- looking forward to meeting my baby
Hello, I'm the person who posted the original request for advice
and I'd really like to thank everyone for their encouraging words
and personal stories.
Even with two separate markers indicating Down Syndrome on
prenatal tests(AFP and brain cysts on the u/s), my amnio came
back and showed that my baby is free from any chromosomal issues.
I was concerned about the risk of miscarriage with the amnio, but
really needed to know. I had absolutely no problems with the
amnio - no cramps, no bleeding, nothing. It's worth it to have
the anxiety taken off your shoulders.
I've heard from many sources that an inaccurate AFP 'positive
screen' for DS is more common in female fetuses since the blood
proteins are different.
Best of luck to anyone else in this position, it takes a lot out
Extremely Relieved Mom
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