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Conference moira::parenting_v3

Title:Parenting
Notice:READ 1.27 BEFORE WRITING
Moderator:CSC32::DUBOIS
Created:Wed May 30 1990
Last Modified:Tue May 27 1997
Last Successful Update:Fri Jun 06 1997
Number of topics:1364
Total number of notes:23848

382.0. "AFP: Alpha Fetoprotein Test" by GENRAL::M_BANKS () Mon Oct 01 1990 14:38

I'm now 14 weeks pregnant and have the make the "to do or not to do"
decision about an AFP test.

I didn't have one with my first son--I didn't like the odds, and I
figured the stress of a false positive too great a risk.  But toward the
end, I wondered...

So here I am again.  I'm leaning toward it, but still don't really want it.
My husband would say yes, but is going with my decision on this one--it's
not something he definitely feels the need to know.  I've read the V2
discussion on it, but am wondering how many would (or did), and did anyone
regret doing it?


Marty
T.RTitleUserPersonal
Name
DateLines
382.1I did itCSC32::WILCOXBack in the High Life, AgainMon Oct 01 1990 14:542
Marty, I had one with both.  Didn't bother me.  I would have opted for
amnio if the level was out of the "normal" range.
382.2I did it too!LEZAH::MINERMom...I'm as happy as a shark.Mon Oct 01 1990 15:2017
    I had one with my first and had amnios with my next 2 kids, so it
    was all inclusive.  But I have stories of both ways.  My brother and
    his wife, both doctors, opted not to have the AFP with their baby be-
    cause of the false readings, saying it would just create unnecessary
    anxiety.  My other sister-in-law did the AFP, got an low reading and
    went ahead and had an amnio.  Baby was perfectly normal, the AFP was
    incorrect. 
    
    My doctor gave me an interesting piece of advice - he said he doesn't
    do amnios for people who would not take measures utilizing the
    information from the amnio.  If you won't take the next step, i.e.
    get an amnio if the results aren't "normal", then you probably
    shouldn't take the AFP test.
    
    Just my $.02
    
    
382.3AKOV13::MUNSEYMon Oct 01 1990 15:578
    I had the AFP with my first, but was prepared to have an amnio (and
    prepared to make the decisions that come with an amnio) if it
    was out of the normal range.  I am pregnant with #2 and 36 years old, 
    so this time we are going right to the amnio.  
    
    Being prego can be tough!  Good luck with your decision.
    
    Penny
382.4another "yes"TIPTOE::STOLICNYMon Oct 01 1990 16:008
    
    I took the AFP test also and had no regrets.   My results were
    "normal".   I took the test based on my willingness to consider
    the alternatives had the results been "positive" (I think
    Positive=negative in medical terms).
    
    Good luck,
    Carol  
382.5Decide how you will use the informationSCAACT::COXKristen Cox - Dallas ACT Sys MgrMon Oct 01 1990 17:2110
What will you do with the information?  If you will use it to make a decision
about the future of your pregnancy, then that should weigh strongly toward
taking the AFP.  However, if you would not change anything at all after getting
the AFP (or even going on to the amnio) then why do it, and take the (high)
chance of false positive, creating tension for the next several months?

My $.02 (didn't take it with either of mine)

Kristen
382.6CRONIC::ORTHMon Oct 01 1990 17:4015
    I agree with Kristen.....decide based on how the information would
    affect your course of action. My wife has not had one with any of our
    children (actually, don't think it was available with our eldest....at
    least we never heard about it), because it would have had not effect on
    our action. Owing to our strong pro-life stand, we would not terminate
    a pregnancy regardless, so didn't think we'd want to know if there was
    anything wrong beforehand.
    Some people who would not terminate a pregnancy, still might want to
    know, in order to have time to prepare themselves to the idea of a baby
    born with a problem. For them, it helps. For us, I don't think it would
    have.
    Decide how you would react to either a "good" or "bad" result....play
    the whole scenario through in your head. And then make an informed
    decision based on that.
    --dave--
382.7We Don't Get The ChoicePEKING::LYNGATue Oct 02 1990 15:1515
    
    What do you mean by 'AFP' - is it Alpha Fetal Protein test?  And is it
    the test they take from a blood sample?
    
    If so, here in the UK, we don't seem to get offered the choice as to
    whether to have the test or not.  The midwife simply went ahead and
    took the blood and said it was "Just for testing for alpha fetal
    protein" related to, I can't quite remember, but I think spina bifida.
    
    Is this right?  I hadn't even realised there was any controversy over
    the test!  Another example of the different ways things are done either
    side of the Atlantic.
    
    Alison
    
382.8another yesASABET::TRUMPOLTLiz - ML05-3/T92 - 223-6321Tue Oct 02 1990 18:1012
    Yes Alison (.7) it is the Alpha Fetal Proten test, and is done with a
    blood test.
    
    I had mine done with Alex and wasn't nervous about what the results
    would be.  I was prepared for the worst, sicne I had already had a
    miscarrage a few months earler.  I was just glad that I could still
    have a baby no matter if it had a problem or not.
    
    
    Good luck.
    
    Liz
382.9KAOFS::S_BROOKOriginality = Undetected PlagiarismTue Oct 02 1990 19:0813
>    If so, here in the UK, we don't seem to get offered the choice as to
>    whether to have the test or not.  The midwife simply went ahead and
>    took the blood and said it was "Just for testing for alpha fetal
>    protein" related to, I can't quite remember, but I think spina bifida.
    
Well, that's a typical example of UK medicine where the medical profession
are gods and patients are there to keep them that way.  They do the procedure
and then tell you a little bit about it.

It makes my blood boil.

Stuart (who has a lot of family still in England)

382.10MAJORS::RUMBELOWTake the money or open the boxWed Oct 03 1990 09:0225
    A response from a British noter re the previous reply.  Stuart, I'm
    sorry that the British medical service makes you so upset.  However, I
    would just like to put in one alternative opinion.  In my and my
    family's limited experience, the "mortals" in the British Health
    Service definately outnumber the "gods".  I realise that my opinion and
    my (very small!) family's opinion doesn't constitute a representative
    survey - perhaps other UK noters would like to add comments  I would be 
    interested to see if I am the only one who has anything positive to say, 
    or whether I have just been lucky in the doctors I have come into contact 
    with.
    
    Now, I don't think that the National Health Service is entirely
    wonderful, and I'm not saying that all British doctors are wonderful,
    I'm just saying that as a person on the receiving end of treatment by
    British doctors, I have had not any truely bad experiences of British
    doctors, most of the doctors I have come into contact with have had
    not behaved like gods and I have had some very good experinences.  (The
    consultant obstetrician I saw during my pregnancy discussed my medical
    problems with me, explained exactly why he thought my baby needed to be
    delivered early, and asked me whether I would prefer to be induced, or
    to have a cesaerian).  
    
    Just one alternatice opinion FWIW.
    
    - Janet          
382.11"Risks of AFP Testing"MOIRA::FAIMANlight upon the figured leafWed Oct 03 1990 12:3640
Issue 56 (July/August/September 1990) of _Mothering_ magazine had a brief
article by Helen Klein Ross entitled "The Hazards of AFP Prenatal Testing".  

	"Recent literature points out that the predictive value of AFP
	testing is appallingly low.  On the first screening, about 5 percent
	of all women tested receive abnormally high readings.  However, only
	1 or 2 percent of them actually carry babies with neural tube defects.
	This means that of every 2000 women tested, 100 will have an abnormal
	reading, but *only 1 or 2* will be carrying a fetus with this
	congenital defect.  For many women with low AFP readings, *the risk
	of having a baby with Down Syndrome (about 1 in 378 for 35-year-olds,
	and dramatically lower for younger women) is lower than the risk of
	losing a healthy baby through amniocentesis (about 1 in 200).

	"The question is, why is a test with such a high false-positive rate
	routinely offered to pregnant women? [...]

	"What's more, the high incidence of false alarms is only part of the
	problem.  According to statistics, the AFP test misses about 40 percent
	of spina bifida cases, 10 percent of anencephaly cases, and 80 percent
	of fetuses with Down Syndrome.  All of which make a *negative* result
	by no means reassuring.

	"... it seems that the only group to substantially benefit from AFP
	screening are those who make their living in the field of prenatal
	testing.  Unquestionably, "failed" AFP tests result in many more
	candidates for ultrasound and amniocentesis than would otherwise
	consent to these procedures, in light of their risks and their costs.
	In the New York City area, each AFP test costs about $60, ultrasound 
	runs around $500, and amniocentesis can amount to a setback of over 
	$1000."

Ross points out (as many women in this file have observed) that even when the
positive result on an AFP test is false, the woman is condemned to several
weeks of potentially severe emotional suffering while waiting to learn the
bad news.  Given that 5% of screened women will be needlessly subjected to
that anxiety, how does one trade off the costs and benefits of such a 
procedure?

	-Neil
382.12KAOFS::S_BROOKOriginality = Undetected PlagiarismWed Oct 03 1990 13:4226
re Janet's reply ...

Just so you know where I am coming from, I spent 16 years in the UK and have
had more than my fair share of God doctors, but even the mortals still tend
to be very uninformative ... you have to work to get information from them.
They'll order tests or treatments and not discuss with you what they want to
do and why, not giving you the patient any opportunity to ask if there are
alternatives or  the like.  Now some do it because they are gods, and some
do it because it's just the way its always been, only tell the patient what
s/he must know, and others do it because they think that either patients
don't want to know or don't have the background knowledge to use any information
they give them.

Yes, things are improving ... I've been to Drs in England who were very good.
I've been to others who were terrible.

Generally speaking, we've had a better track record with the Doctors we've had
here in Canada, but there are some Doctors here I wouldn't want to see again ..
and strangely a couple of them are specialists who emigrated here from England.
:-)

Don't think that I'm UK knocking ... my family has certainly had their fair
share of help from the NHS ... I just hate some of the attitudes of the medical
profession.

Stuart
382.13CSC32::WILCOXBack in the High Life, AgainThu Oct 04 1990 00:471
BTW, I believe it's "feto", not "fetal".
382.14not only UKTLE::RANDALLliving on another planetWed Oct 10 1990 12:4913
    Not only wasn't I given a choice about the AFP test, I didn't even
    know I'd had it until I went back in for the next checkup and they
    told me the result was normal.  I thought they were taking blood
    to check my hemoglobin, which is something I always have a problem
    with.  They did that too, plus a whole bunch of other tests I
    don't have any idea what were.  And this from a US doctor who is
    generally quite good about explaining things and so on.  I was
    fairly annoyed.
    
    He didn't insist on the amniocentisis, however, especially after I
    told him it wouldn't make any difference to what I did.  
    
    --bonnie
382.15GENRAL::M_BANKSThu Oct 25 1990 21:0812
I'm the basenoter.

I took the test and it was normal, so I can't say I regret it.  BUT, I
still don't feel very comfortable with it given the statistics (i.e., .11),
and can't honestly say I would consent to it again.

I think it's one of those things that make you wonder if medical science is
going too fast for itself.  Until a test like this is more conclusive and
dependable, I almost wish it weren't available at all.


Marty
382.16Borderline ResultsMFGMEM::HELENICFri Nov 30 1990 19:4829
    
    I just got my results back from the AFP - borderline.  I'm scheduled
    for a retest on Monday.  The nurse tried to assure me that the border-
    line reading doesn't mean there's a problem, and the retest will just
    check the accuracy of the first test and I shouldn't worry.
    So how do I feel at this moment?  Bummed.  Worried.  Annoyed.  This is 
    my first pregnancy and I'm in my 17th week.  Since the beginning, I've 
    tried to keep from letting worries and fears spin in my brain - mostly 
    by educating myself - reading books, articles, PARENTING (extremely 
    helpful), and talking with people.  I was apprehensive about this test, 
    based on the information I've read.  And now I must educate myself on
    my options if the test comes back with a more positive reading and
    think about what we may want to do.  I can't put it out of my mind
    until the results come in because I don't want to be sitting in the
    doctor's office and being put on the spot to make a decision.   
    
    I do hope they develop a more accurate test in the near future.  I would
    prefer to know now if there is a _real_ problem, rather than finding
    out at birth.  If I had the opportunity to make this decision again,
    being where I am right now - I still would probably do it.  I will
    survive the emotional stress.  Most likely there isn't a problem.  I
    guess I'd rather know than not know and am willing to do all the
    tests to find out.  Maybe I wouldn't feel the same if this were my
    second child.
    
    Audrey
      
      
    
382.17Alpha fetoprotein testEPOCH::NELSONMon Mar 11 1991 17:2421
Hi,

I am about 9 weeks pregnant.  At my first pre-natal exam, I was told
about the alpha fetoprotein (sp?) test that could be done around the
14th week to test for signs of spina bifida or retardation.  They also
gave me a pamphlet explaining the test, which I have read.

I talked to my husband about it and we agreed that I would not have the
test.  Since then, I've learned that a few of my friends did have the
test.  One showed high protein levels leading them to believe that the
baby was older than they thought (she was born healthy); the other friend
showed low protein levels and has gone for amnio to check for downs
syndrome (they're still waiting for the test results).

I was wondering if this is a test that most people have.  The doctor told
me that it is not very accurate and can come back with false positives or
false negatives.  If it is that inaccurate, what are the advantages to 
having it done and the disadvantages of not?

Thanks,
Dawn
382.18FDCV06::HSCOTTLynn Hanley-ScottMon Mar 11 1991 17:347
    It's not that the test itself is inaccurate - it's a question of having
    it done at the time when the levels of fetal protein are sufficiently
    readable. Also, in and of itself, the test diagnoses nothing - it can
    simply be a meter for the OB to consider having other tests done.
    
    In both my pregnancies, I've opted to have it done.
    
382.19Another pointerNOVA::WASSERMANDeb Wasserman, DTN 264-1863Mon Mar 11 1991 17:432
    And note 2090 in the V2 file.
    
382.20STAR::MACKAYC'est la vie!Mon Mar 11 1991 19:1216
    
    My OB felt very strongly to have the AFP test done. I talked to
    my sister who works in a research lab in California and she told
    me that AFP is now a routine blood test on the west coast. The
    margin of error is pretty much the same for other blood tests.
    The benefit is very high. It is not an invasive test like the amnio.
    If the fetus is abnormal and if the information is known before birth,
    the baby has a higher rate of survival, since corrective surgery
    can be preformed at birth or even before birth. My sister knows 
    of one case that the baby's stomach was outside the body cavity - 
    the baby was delivered thru c-section, the pediatric surgical team was 
    there to patch things up. Before, a baby like that wouldn't have 
    that much chance to survive.
    
    
    Eva.
382.21I felt it was better safe than sorryULTRA::DONAHUETue Mar 12 1991 15:1715
    
    When I was carrying Daniel, I told the doctor that I would want ANY
    test done that he felt should be performed. I was 36 at the time,
    pregnant for the first time.

    I wanted the medical team to know everything they could about the
    baby's condition so that they could act accordingly. With so much
    technology available today, I couldn't refuse a single test. All went
    well and Daniel is a healthy little 5 month old today.

    The way I feel is, "why wonder if". I had the tests done to put MY mind
    at ease and give the doctor the data he needed to do EVERY thing he
    possibly could do.

    Norma
382.22RTL::ROLLMANTue Mar 12 1991 18:2914

I didn't do the AFP.  I had amniocentesis for other reasons, and so got the
AFP results too.

The midwives told me the blood test is 80% accurate at diagnosing spina bifida,
etc.  Personally, I want more accuracy than that and would not have done the
test, even if I hadn't had amniocentesis.  I decided early in pregnancy what 
was accurate enough and how much was too much technology for me.  A 1 in 5
possibility of error was too large for me to accept.

The funny thing is when the midwife gave me the amnio AFP results, she told me 
the supervising doctor's office insisted she offer me the blood test option, 
even tho it was superfluous.
382.23What's to lose?CLOUD9::WEIERPatty, DTN 381-0877Thu Mar 14 1991 14:077
    I had it done for both of mine ... a simple blood test, Why not??  Both
    of my OBs STRONGLY recommended it - the biggest concern being that the
    test was done at exactly the right week of pregnancy.  
    
    Why Not do it?
    
    Patty
382.24I didn't botherMEMIT::GIUNTAThu Mar 14 1991 14:106
    Well, I opted not to have it done, and my OB was quite pleased.  He
    said he doesn't like doing them because of the chance of getting a
    false high reading.  In my case, that would almost be guaranteed to
    occur since I'm having twins, so I didn't see the point to do it.  But
    then, his reaction might have been typical with his patients having
    twins.
382.25For the benefit of the baby...ERLANG::MAHONEYTue Jul 16 1991 18:1516
    My husband and I couldn't decide if we were going to have it done as we
    would not terminate the pregnancy no matter what and we didn't want to
    get a false reading and have to worry for 4 1/2 months.
    
    We decided, for the babies benefit, to have it done.  Reason being,
    that if there is a problem we will know in advance and will be able to
    deliver at a hospital that will be equipped to handle the problem
    immediately, i.e. Brigham & Womens.  We are having our baby at Emerson
    and if there was a problem the baby would have to be transported and
    that could waste precious time.
    
    Well I had the test done a week ago in my 18th week of pregnancy.  They
    do not call unless there is a problem.  I don't know how soon the
    results come back but I haven't heard anything so I am keeping my
    fingers crossed.  This is our first baby after 2 years of trying and
    fertility testing.
382.26FDCV06::HSCOTTLynn Hanley-ScottTue Jul 16 1991 18:497
    re .25
    Understand that the AFP test is not necessarily an indicator of
    something being wrong - it can "simply" be an indicator that the
    fetal protein levels are askew, and that further testing is required.
    
    best of luck,
    
382.27USAT02::HERNDONKTue Jul 16 1991 18:5512
    
    My OB suggested I have it done too...I'm trying to remember
    the odds and am just not going to worry about it.  If it
    comes out bad, I will get an amnio...I agree with
    earlier notes, there is nothing wrong with having a little
    knowledge about the condition of your baby whether you
    choose to continue with your pregnancy or not.
    
    BTW - the doc said it takes 10 days for results (usually).
    
    This is my first and I hope everything goes perfect! 
    
382.28Low AFPCASDEV::P_SULLIVANMon Aug 26 1991 14:4122
	I had the AFP test done last week.  My midwife called me on
	Friday and told me that I have a low AFP.  She told me that
	the screening test indicated that I have a higher chance
	of having a downs baby (1:265) than a 35 year old woman (1:375).

	The nurse midwife was very reassuring.  She told me that her
	own personal AFP test was also low, and indicated a 1:191 chance
	of her baby having Downs Syndrome.  She also told me that in
	the 300-ish cases such as mine (and hers) that she has been involved
	in, she has never seen an actual case of downs syndrome in the baby.

	She put me in touch with a genetic counselor, and I have an
	appointment with them to discuss the results, and decide if I
	want to do further testing with an amnio.  My question is:
	Has anyone out there received low (or high) AFP results, and NOT
	had any further testing done??  How did you come to your decision?

	Thanks,

	Patty
    
382.29More criticism of AFP testingMOIRA::FAIMANlight upon the figured leafTue Aug 27 1991 11:5232
This brief item is from the Spring 1991 issue of _Mothering_.  See also
my .11, which summarized the article "The Risks of AFP Testing" from the
same source.

------------------------------------------------------------------------

Amniocentesis is routinely recommended to women with high levels of alpha-
fetoprotein (AFP) in pregnancy.  The risks associated with the procedure
include respiratory distress ysndrome, pneumonia, infection of the amniotic
sac, amniotic fluid leakage, abdominal bleeding, vaginal bleeding, and
needle injury to the baby.  Fetal loss, claimed to be "not statistically
significant," ranges from 0.5% to 1.5%, while a Danish study shows that 
compared with pregnant women who do not undergo amniocentesis, those who 
do are 2.3 times more likely to spontaneously abort their babies.  
(Robin J. R. Blatt, _Prenatal Tests_, pp 88-90)

A new statistic places this miscarriage rate in perspective.  Physician-
researchers at Boston's Brigham and Women's Hospital, after studying 
87,584 pregnancies, report that an elevated AFP level in conjunction
with a normal ultrasound scan implies less than a 0.1% chance that the
baby will have one of the four most common birth defects.  In light of 
the finding that amniocentesis itself carries, at the lower range, a 0.5%
chance of terminating a pregnancy, the authors conclude that "many ... 
women may choose not to have an amniocentesis when informed that the risk
of pregnancy loss may be substantially greater [by a factor of five] than
the likelihood of finding an anomaly."

... [The findings add] "little support to a strategy of routine amnio-
centesis in women with elevated levels of maternal serum alpha-fetoprotein."

Reference:  _The New England Journal of Medicine 323_, no. 9, 30 Aug 1990,
pp 557-561.
382.30I just had it doneBSLOPE::BOURQUARDDebTue Feb 11 1992 16:4215
My doctor gave me a 4-page description which included some of the medical
text I've seen quoted in this note string.  They're doing a combined AFP-HCG
rather than just an AFP.  My motivation for having the test performed is
that a baby with a neural defect has an easier time if delivered C-section.
If the AFP is high indicating a potential neural tube defect, my doctor will 
recommend an ultrasound with Dr. Benacerraf in Boston (who is reportedly one of 
the best ultrasonographers in the country).  The literature I was given stated
that a highly talented ultrasonographer can achieve results equivalent to amnio
when it comes to detecting neural tube defects.

If the AFP is low, I believe I will choose not to undergo amnio.  I prefer
to avoid the risk of miscarriage.

Since the outcome of this test (or series of tests if I need the ultrasound)
could make a difference in delivery decisions, I chose to have it performed.
382.31Scan and Bart's test as back-upMARVIN::MARSHThe dolphins have the answerWed Feb 12 1992 07:1055