Conference moira::parenting

    We decided to turn down the test when our doctor explained the test
    to us. The test is performed to check for spina bifida. We asked if
    anything could be done for the baby if the disease was detected and the
    answer was no. We asked why we should do the test and the doctor said
    it would give us the opportunity to elect an abortion. We have decided
    to live with whatever God gives us.
    
    Mike

    Mike,
    
    We did the same thing with both my pregnancies. When it was offered
    I refused, since I wouldn't do anything different if it came back
    with a bad result. I decided that if it had been bad news, the 
    only thing I would have done differently would have been to be
    depressed, which wouldn't have been good for the baby anyways.
    
    I took my chances, and fortunately for me, had two healthy babies!
    
    -Sheila
    

    
This note is being entered at the request of a (different) member of
the PARENTING notesfile community who prefers to remain anonymous at
this time.

Carol Stolicny, PARENTING co-mod
---------------------------------------------------------------------
The AFP is a blood test done at about the 17th week of your pregnancy.
From what I understand, the baby produces this protein and from there,
it gets into the mothers bloodstream.  At 17 weeks, they know what the
level should be in the mother, and therefore can determine if it's too
high or two low.

This is only a screening and a reading that is too high or too low might
require further testing, such as amnio.

I think it's a very worthwhile test.  I know a lot of readers of this
conference don't feel that way because they have decided that even
if there was a problem, they would not consider terminating their pregnancy.

I always thought I was one of those readers until my test came out with
a reading over 5 (the dr checks into anything over 2, I think). Further
testing (a simple level 2 ultrasound) indicated a very severe case of spina
bifida with the associated brain damage in my 17 week old daughter.
I went ahead with the amnio just to confirm ..

We were told that from the severity of it that there would be no way she would
survive on her on.  We elected to terminate the pregnancy at that point
and it was the hardest and saddest thing I have ever had to do.

I know this is a very controversial issue and not everyone agrees with
what we did.  But, we did have the info up front to make that decision and
it was the best decision to make for me and my family.

I highly recommend that all pregnant women have this test done.

    
    
    
    
    As I understand it, the AFP is a simple/routine blood test.
    
    While the test points to Spina Bifida, it is often used to determine
    whether an amnio to detects Downs Dyndrome is warranted. A friend of
    mine had the AFP, got a low reading, was advised re:an amnio and
    refused, and gave birth to a daughter who has Downes Syndrome. 
    
    Evidently, a confirmed "high" means SOME degree of spina bifida, a
    confirmed low MAY mean Downs.
    
    Good luck with the decision. Unfortunately, it is one of those very
    difficult decisions you will have to make mostly on your own.  

    I elected to have it done with both pregnancies. My reasons were
    mostly to know ahead of time if there was anything further that
    I could do for the baby if something was wrong. For example, 
    the hospital where I went/will go isn't very big but it's just 
    fine for routine deliveries. If we suspected some problems though, 
    my dr's would have sent me to Worcester or Boston. In my case, the
    first test turned out fine and the second indicated a elevated risk
    of Down's. For my age (34), the risk should have been about 1 in 400,
    the first of the 2 tests said 1 in 106, the second 1 in 138. I had the
    amnio done and the chromosomes are just fine. 
    
    

    
    
    The best thing to do is talk to your doctor, I know when I was
    pregnant my doctor asked me if I wanted the test gave me a booklet
    to read, and said they would ask me again at my next visit if I
    wanted the test done, and if I did they would do the test then.  My
    doctor also told me there is a high rate of false positives.  It
    is a decision that you and your partner need to talk over and decide
    what is best for you.  I decided I did not want the test, and my
    daughter is very healthy.
    
    Good Luck
    Lisa

    I had the AFP test for my third pregnancy.  I had it for a couple of
    reasons - I was over 35 and I DIDN'T want an amnio (which is also
    advised for over-35 pregnancies).  It was a simple blood test and it
    came out perfectly normal.
    
    I wanted to make sure that everything was ok with my baby - abortion
    was not an option but I wanted to be mentally prepared in the event
    that something WAS wrong with my little guy (he's 3 now and more normal
    than me!).  This test was a simple way to do that.  Having a history of
    miscarriage I ruled out amnio because I'd heard there was a SLIGHT risk
    of miscarriage.  
    
    From what I've heard, they do err on the side of caution with this
    test.  It's probably been perfected since I had mine but I do know of
    several people who had low or high readings and their babies were
    perfectly normal.  This was over three years ago though.
    
    Good luck with your decision.
    
    
    

    Another thing that could cause a LOW reading is aceteminephene (sp?).
    I read that after having the amnio because of a low AFP reading and
    my amnio results were normal. I lived on aceteminephine for the first
    4 months of my pregnancy because of headaches.

    Another thing that can cause a high reading is a multiple
    pregnancy.
    
    --bonnie

 I just had the AFP blood test drawn last week and am now waiting for the
 results.  At first I had decided not to do this test since I wouldn't
 elect to have an abortion if anything were wrong, but after talking to
 my doctor I changed my mind.  The two things that she told that made me
 change my mind were 1) they now do an HCG test with the AFP since there 
 is some connection to the two levels when diagnosing Down's syndrome.  
 This leads to fewer false positives as far as Down's is concerned.
 2) If there is a positive result, before they consider doing an amnio
 they will do a fetal survey ultrasound (level 2 ultrasound?).   This 
 allows them to rule out multiple babies, look for deformities in the
 extremeties, and look at all of the major organs in detail.  I also 
 decided that I would want to know ahead of time if something was wrong so
 I could be prepared when the baby is born.

 Anyone considering this test should ask their doctor about the HCG testing
 as well as the fetal survey ultrasound.

 Terri

    The problem with AFP testing, as a previous noter pointed out,
    is the number of false positives you receive. I was one of 
    them and suffered for four weeks as I waited for an amnio
    result to tell me if the AFP was right or not. From what I 
    was told by my doctor in Boston, is that they offer the test
    to patients for fear of lawsuits if they do not offer an AFP
    and something is wrong with the child. Over here in Britain,
    lawsuits are not as common (yet, but my GP told me they are
    on the increase) so you are not as pushed to take the AFP as
    in the US.
    
    I wouldn't take it if I had to do it all over again.
    
    Elizabeth

The following is a reply from the anonymous basenoter.

Carol Stolicny, PARENTING co-mod
-------------------------------------------------------------------------

        Thank you for the responses received so far.  They have been very
        helpful but have also raised a few additional questions.

        I'm interested  in  some  more  detailed  medical  information if
        anyone has some.  Lisa (.6) mentioned a booklet.  Perhaps some of
        the answers I'm looking  for  are  in there.  I don't live in the
        States and I don't have easy access to AFP info.

        Specifically, I'd  like  to know in what time frame the AFP blood
        test can be done.  Also, does anyone have more information on the
        the range of levels that are acceptable and the ranges that point
        to  possible  problems  (what  levels  point  to  what problems)?
        Finally, most notes have discussed the AFP tendency to err on the
        positive side.  Does anyone know if there are many cases of false
        negatives, ie.  acceptable  AFP  levels still resulting in babies
        with genetic defects?

        Thank you for your help as well as for the good wishes!

        Anon

    re .12:
    >    Specifically, I'd  like  to know in what time frame the AFP blood
    >    test can be done.  Also, does anyone have more information on the
    
    According to my pamphlet, the test may be performed between 15 and 20
    weeks of pregnancy, but it is most accurate when performed between
    16-18 weeks (based on the mother's last menstrual period). 
    
    ( Like another noter mentioned, my last AFP test was called an AFP-2
    or AFP-3 because they also check the levels of HCG and estriol(?) to
    help better date the pregnancy). 
    
    >    positive side.  Does anyone know if there are many cases of false
    >    negatives, ie.  acceptable  AFP  levels still resulting in babies
    >    with genetic defects?
    
     I've heard that there are some false negatives. My pamphlet says:
    "NTD(neural tube defects), Down Syndrome, or other birth defects may
    occur with normal test results. The serum AFP test can be a useful
    guide, but it is not foolproof."
    
    The pamphlet goes on to talk about statistics if the results are
    abnormal; I'll try to type that in later.
    
    Sue
     

    
    Hi,
    
    
    	If the basenoter would like I will get my pamphlet out tonight
    and photo copy it and fax it to you.  If you want write me off line 
    with your fax number and I'll send you a copy.
    
    
    Lisa

>    ( Like another noter mentioned, my last AFP test was called an AFP-2
>    or AFP-3 because they also check the levels of HCG and estriol(?) to
>    help better date the pregnancy). 

That's probably estradiol.

I had a false negative AFP test result.  My son had a closed neural tube defect
which is not picked up by the AFP test.  Usually a neural tube defect is open
meaning that it is only covered by a membrane.  In my son's case his was covered
by skin.

I had the AFP test with all 4 pregnancies and would do it again if we were to
have any more children.  If a child does have an open neural tube defect it is
recommended to have a C section to minimize the risk of further damage.  Also
a child born with an open neural tube defect requires surgery asap to close the
opening to prevent infection.  The more the Doctor's know and are prepared the
better off the child will be.

As for my son:  He is a doll!!!  and a joy to all who come in contact with him!
He is 3 1/2, walks with long leg braces and a walker (He is starting to ues
crutches).  This past year he attended an integrated 3 year old preschool.  He
is a very determined independent little guy.  He finds a way to do what he wants
to do and there is no stopping him.  Don't get me wrong, it has not been all 
easy ( he has had 3 surgeries) but the whole family has learned a lot and
gotten closer because of him.

    
    I believe the AFP test can benefit those who get a true negative result
    and those who get a true positive result, but I opted to forgo the test
    for my second pregnancy after hearing a story from a co-worker who had
    a false positive result.  She had to undergo an amnio and suffer for
    almost a month, wondering if her baby suffered from one of these
    abnormalities....the baby was fine!
    
    Just remember that timing is critical in this test.  If your due date
    is not accurate, you can easily get a false positive result.  If your
    pregnancy is not as far along as they believe it to be, than the AFP
    level can be too high due to the spinal column (?) not being completely
    closed.
    
    Maybe the docters should perform an ultrasound on each patient before
    performing the test, then the accuracy of the due date can be
    determined before the AFP test.

    Our doctor said that while some medical professionals say that a spinal
    problem detected via AFP can be lessened by the method of delivery, he
    personally doesn't believe it and has never seen evidence of this being
    the case. He was unable to give us a good reason (other than abortion) 
    to have the test so we said forget it.
    
    Mike

The accuracy of the AFP blood test was quoted to me as 80% (from more than
one source).

My personal feeling is that this is not accurate enough, and so refused to
do the test.  Note that I *did* have amnio for both babies (due to age) and
so got AFP results from that.  The AFP results from amnio are quoted as 98%
accurate, an accuracy I can live with.

Pat

I had the AFP test for both pregnancies and would have it again for a future
pregnancy, now that I understand the high percentage of false positives it
gives. 

I got  a false high result for my first child, indicating possible spina bifida.
I requested another AFP test (which my doctor recommended against as providing 
no additional information) which turned out normal. And I had an ultrasound, as
recommended by my doctor, to examine the spinal column, which also appeared 
normal. My husband and I were nervous wrecks for the week we had to wait for the
ultrasound and AFP followup results. We scoured the libraries for the very
limited information on spina bifida. Although the early ultrasound could not
prove the absence of spinal column damage, its result togther with the normal
AFP result allowed my husband and I to dismiss the first result and continue
with a happy pregnancy. If I couldn't do that, the high percentage of false 
results would lead me away from ever having the test again.
 
We chose to have the AFP test with the second pregnancy. We now could accept the
high false results. I asked my doctor if correct results from the AFP could
help the baby in any way. In the case of being forewarned of spina bifida, I 
could deliver in a hospital that was prepared to perform important surgery
on the baby as soon after delivery as reasonable, without moving the baby to
another hospital. Since the test presented no danger to the baby, could help
the baby in some cases, and we were prepared to deal with a possible false 
result, we chose to go ahead. 

A friend of mine got a false low result, indicating possible downs syndrome.
Since an amnio could only verify the presence/absence of downs, but not the
degree, my friend chose not to have the amnio, which has some small percentage
chance of causing a miscarriage. She wanted to have the baby no matter what
and delivered a baby who didn't have downs.

I have two other friends that got false positive results. So I try to delicately
forwarn any of my pregnant friends about this. It is one thing to hear 
statistics from your doctor, but is often more helpful to know that people
you know have gotten false results.  

In this high tech era, each individual needs to understand the reliability of
all these tests we can take and how they can help/hurt the baby or parents 
before you can determine what is right for you. Good luck to you and all
parents that need to make these decisions.

    I find this topic very interesting - I did not know about the
    high rate of false positives.  In California (where both my
    boys were born) the AFP test is REQUIRED by the state.  (The
    state does not pay for it, though.)  I took it routinely.
    Now I find myself wondering what the state of California is
    doing legislating such a test. If anyone knows, please reply.

    
    	I had the AFP done when carrying my first child as spina
    	bifida runs on my side of the family as well as my husband's.
    	We decided that we wanted to be prepared for very much the
    	same reasons as the noter in .20.  Not only would we be
    	concerned about surgeries following the birth but our daycare
    	arrangements would have potentially had to be altered.  
    	Although we were not going to terminate the pregnancy (as
    	we knew the risks of false positives), we wanted to be
    	prepared mentally and emotionally for what we could be
    	in for.   Luckily our test came out fine as did our 
    	daughter.
    
    	I am getting ready to have another one done in a few
    	weeks since I am pregnant again.  I still have the same
    	reasons for wanting to have the test done and since there
    	is no physical risk to the unborn baby of a maternal 
    	blood test, I feel there is no harm done.
                                                    
    	I'm glad I had it done as I would have worried more 
    	during my pregnancy that the baby could potentially 
    	have spina bifida if I didn't have the test.

    I have some questions with this subject.
    
    Every women wants to know (I assume anyways) the potential of defects
    in their unborn children.  At what point do the doctors do this
    testing?  I had my AFP done at 16 weeks and am still awaiting the
    results.  Do I assume that if this test comes out normal that no amnio
    will be done?  Do I have an option of choosing this test just to secure
    my mind?  If so, why haven't others done this test?  What about an
    ultrasound?   I had one at 9 weeks and everything was fine but still,
    you wonder and I would like to know as much as possible.  My doctor
    says that everything is running smoothly; the baby is the correct size
    (by doing external exam), and the heartbeat is strong.  Still however, 
    being pregnant for the first time in my life I want to know everything
    that I can and not just an "your already don't worry" attitude.
      
    Any help would be greatly appreciated.  thanks much,
    cj
    

    You will have an option regarding any test.  I did not have an
    ultrasound with my second, but did with my first.  I had the APF with
    both, and no amnio.  I felt that anything the amnio told me would just
    concern me - I wan't planning to do anything with the info - it wasn't
    even suggested to me.  The reason I went with the APF is because it was 
    a blood test - nothing to jeopardize my pregnancy (such as amnio)
    nothing to be concerned about in the future (such as with X-ray, and
    other "rays") and it didn't cause a great deal of pain or discomfort
    for me or the baby.
    
    All choices are yours - the doctor makes "suggestions".
    
    -sandy
    

    The AFP is supposed to be done between 15 and 18 weeks gestation.  It
    usually takes 1-2 weeks to get the results.  THIS TEST IS MEANINGLESS
    in of itself!  This is a SCREENING to help you decide if there's an
    increased RISK, to give you the opportunity to have further, more
    conclusive tests.
    
    The test results can come back "normal", which will better your risk of
    having a child without Down's or SpinaBifida, but it's NOT conclusive.
    If the test results come back low, that means that, for your age, you
    have an increased risk of a child with Down's syndrome.  If the results
    come back high, this means that you have an increased risk of a child
    with an open neural tube defect.
    
    I just got my results back last week, and the test came back low. 
    Normally, my risk (at age 30) of having a child with Down's would be 1
    in 700.  The test indicates that my current risk is 1 in 290,
    comparable to that of a 35-year-old pregnant woman.  
    The amnio, for Down's, is conclusive.  I had the amnio done on Friday
    because as difficult as the decision would be, I am in no situation to
    be able to care for a disabled child.  The results of the amnio take 2
    to 3 weeks.  They take some amniotic fluid, grow it in a tissue
    culture, and can then "paint" a genetic map of the baby's chromosomes.
    There are 23 pairs of chromosomes normally.  In Down's there are 3 21st
    chromosomes, and it's very evident.  There is a *SLIGHT* risk of a
    false negative test, as the mother can infect the sample, and there is
    also a risk that the culture won't grow and the test needs to be
    repeated.  
    
    If you have the amnio done for EITHER high or low test results, they
    automatically check for both Down's and open neural tube defects.  I
    don't have the sheet with me now, but the results from the neural
    defects seemed pretty accurate.
    
    If you know that you would want to keep your baby, no matter WHAT the
    tests said, then I would suggest avoiding the AFP altogether.  There is
    a high rate of false "positive" tests, and the only way to be sure is
    an amnio.  The amnio itself, at 17-18 weeks gestation, increases your
    odds of miscarriage from ~1.5-2%  to 2-2.5%  The amnio itself can range
    from slightly uncomfortable, to painful, depending on the procedure
    they use, location of insertion, and your sensitivity level.  Between
    all my pregnancies, I had 2 that I never felt much at all, one that
    stung a bit, and this last one which hurt a lot (I think they're going
    downhill with these! (-:).
    
    An ultra-sound can only detect gross physical abnormalities.  They can
    provide you with a "high risk" ultrasound, in which a specialist will
    examine your baby in more detail.  I had this done Wednesday (because
    I'm diabetic).  They look at organs, kidney function, the heart, can
    count heart chambers (should be 4), and be sure that all valves are
    present and working.  They can NOT tell things such as if the blood is
    flowing backwards or if there are other organ defects.  The bladder
    could be there and completely non-functional.  All they can tell with
    an ultra-sound is what they can (and even that's not foolproof).
    
    There's *NO* guarantee that your baby will be healthy.  You can have
    all the tests in the world, and there's still risks.  The risks are
    still pretty low though, and you can't just be worried about the
    what-ifs ... you'll never make it past their childhood if you worry too
    much.  It may be helpful to take a stronger hold on your beliefs or
    faith, or just "fate" and realize that you can do everything you can
    do, and sometimes it's just not enough.  If it was meant to be it will
    be.  
    
    Try to enjoy it and stop worrying!
    
    Patty

    My cousin's AFP came back with a low reading.  After a week of worry
    and distress, finally ordered an ultrasound before they would perform
    the amnio.  As it turned out, my cousin was pregnant with twins and
    this caused the low reading.

    I just had my AFP done this morning.  I am 18 week along. I want 
    to know the results due to the high rate of twins in my family. 
    
    Donna

AFP won't diagnose twins, but the results of the test can be skewed if
you are having twins.  If you suspect twins, I think you may be better
off asking for an ultrasound. At least that way you would know right away
vs. worrying about the possibly skewed test results.  In fact, I refused
the AFP because I knew I was having twins, and told the doctor I'd do
an amnio if it was warranted but I saw no need to do an AFP that would
point to doing an amnio anyhow.

Cathy

  Based on events that I have experienced in the last week, I have changed
  my opinion drastically on these types of tests.  Let me start out by
  stating that I opted to not have the AFP test done with my first 
  pregnancy (1987-1988, I was 31 years of age).  I was of the opinion of
  a few in this string...Why get stressed out unnecessarily for a test that
  has a reputation of "False Positive" readings.  Luckily, my ignorance didn't
  hurt me in this case, and I gave birth to a wonderful, healthy baby girl
  who just turned 6 years old on Monday ( I can't believe time has passed
  so quickly ).

  I am now in my fifth month of my second pregnancy ( 37 years old now )
  and just received amnio confirmation that this child has Down's Syndrome.
  I was initially resistant to my Doctor's recommendation to have an
  amnio done since the only real factor they were making the recommendation
  on was that I was over 35.  I decided to go ahead and have the AFP test
  first, hoping that it might be in the normal range for my age, in which case
  I would not have the amnio.  Just as a side note here - there really is
  no such thing as a false Positive or Negative result in this test.  It is
  only used as a screen to try and measure the probability of the baby having
  either Spina Bifida ( High reading ) or Down's ( Low reading ).  It is 
  really just to help you decide if you think further testing is necessary.
  It is NOT intended to indicate whether or not your baby has either of the
  problems.  When my AFP results came back very low, the doctor recommended
  I have the amnio.  I knew at that time that we would not terminate the
  pregnancy no matter what the result, so I didn't consent right away.  My
  reasoning was that since I wasn't going to terminate ( wouldn't do anything
  different ) why take the small risk of miscarriage with the amnio.  After
  much discussion with the doctor, I became aware of the potential medical
  problems that are associate with Down's Syndrome ( Heart abnormalities,
  bowel blockages, kidney problems ).  The doctor explained that knowing
  whether or not the baby actually had Down's would prepare them better
  to screen for and take care of these problems at birth.  Once I realized
  that knowing could only help the baby in the long run, I agreed to have
  the amnio.  It was done on a Monday and I had the results the following
  Wednesday.  I have been on an emotional roller coaster for the past
  week, but I am so thankful that had these tests and can now actively
  prepare for the birth of our special child.  I know the doctors will
  be ready to help him and us through any medical problems that occur.
  I also know that we will have had this time to deal with our emotional
  reactions, so that when he's born all that we'll have to concentrate on
  is the love and care that only we as parents can provide.

  I guess what I'm trying to say in a very long winded reply is that I think
  it's worth the few weeks of anxiety that you'll face in waiting for the
  test results.  If the results say your baby is fine, then you have peace
  of mind for the remainder of your pregnancy.  If the results say your
  baby will need special care, then you are all prepared to give the best
  there is to offer.

  Sharon

          <<< Note 221.29 by KAHALA::FOREMAN "Back from the Shadow" >>>

  Sharon,

 You are one of the bravest, strongest, most courageous people I have ever
 encountered!  

 Best of luck to you - I'll keep all of you in my prayers.

 Rochelle

    Rochelle,
    
    Thank-you for your kind compliments.  I must say that I'm not feeling
    so awfully brave, strong or courageous at this point, but it's 
    great to feel the encouragement of others.  Your thoughts and
    prayers are greatly appreciated.
    
    Sharon

    Sharon,
    
    You do have alot of courage.  I wish you all the luck in
    the world.  My prayers are with you.
    
    My husband and I talked about what we would do if we were
    in this situation and decided we would keep the baby also.
    
    Although I wonder if we could really.  Personally, neither one
    of us believes in abortion, but on the other hand, having a baby
    with Down's is pretty tough, I would imagine.
    
    A friend of mine elected not to have the AFP test a few years ago.
    It turns out the baby did have Spina Bifida, they discovered it
    in her 7th month thru ultrasound.  The baby was so bad, the doctor
    induced her right away.  She died during labor.  The doctor said
    IF she had gone to term and IF the baby had survived a normal 
    delivery, she would have only lived for a day or so at the most.
    It was a horrible decision for my friend and tore us apart for
    a few years, I was pregnant at the same time.
    
    So, my thoughts and prayers are with you.  
    
    I would recomend the testing, it's only a blood test!
    
    God bless!
    
    Peggy
    

    After just receiving my AFP results and reading this string of notes
    I am now confused.  My results were 1 in 3500.   I am 30 years old 
    and my doctor said those are normal results.  I was very happy but
    what is considered a high reading and a low reading for Downs and
    Spinal cord disorders?  I guess I didn't understand as much as I
    thought.  But I'm not worried since my doctor said I am (we are)
    fine.  Just confused......
    
    Susan
    (due 9/7/95)
    

    It sounds as though they are giving you a prediction instead of an 
    absolute test score. When I received the results for my second child,
    they told me that the chances were 1 in a 100 that he had Downs. 
    For my age at the time (34) it should have been more like 1 in 400 or
    better. (We went on to have an amnio where they said everything was
    fine. He's now a healthy and happy 2 1/2 year old!)
    Sue
    

    re: .33
    The way I understand it, the AFP test is used as a screen only.  In and
    of itself the reading doesn't actually tell you anything for certain.
    I don't know what the actual numbers are, but I do know that they 
    use the amount of Alpha Fetal Protein in you blood to predict the
    probability factor of your baby having Spina Bifida ( higher
    concentration of AFP increases probability ) or Downs Syndrome ( lower
    concentration of AFP increases probability ).  They then look at the
    average probability for people in your age group ( or with family
    history ) and decide if they will recommend further more definitive
    testing.  Whatever AFP level you tested at put you in the normal
    probability range, so no further testing is indicated in your case.
    I hope I've helped a little, or maybe I've confused you more.  
    
    Sharon