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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

755.0. "Amnio information wanted" by --UnknownUser-- () Thu Mar 07 1991 17:05

T.RTitleUserPersonal
Name
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755.1NOTIME::SACKSGerald Sacks ZKO2-3/N30 DTN:381-2085Thu Mar 07 1991 17:531
What will you do if you have an amnio and it's a boy?
755.2Must be medical reasonsHYSTER::DELISLEThu Mar 07 1991 18:034
    To my knowledge, it must be medically necessary, ordered by your doctor
    to be covered by insurance.  Is there a medical reason to have an
    amnio?  And what would you do if it were a boy?
    
755.3Is it worth it????STAR::MACKAYC'est la vie!Thu Mar 07 1991 18:109
    
    Does you doctor reccommend an amnio?
    The purpose of amnio is to detect birth defects (in older mothers)
    and the maturity of the baby lungs (in planned c section for
    pregnancies with complications).  
    There are risks including miscarriage. It is an invasive test.
    So, what if you have another boy?
    
    Eva.
755.4FDCV07::HSCOTTLynn Hanley-ScottThu Mar 07 1991 18:332
    Amnio will not get you a girl.
    
755.5PROSE::BLACHEKFri Mar 08 1991 00:5417
    I think some of you are being a little harsh here.  While I also think
    doing an amnio just to find out the sex is a bit much, if there are
    other reasons to get the amnio, then knowing the sex will be a side
    benefit.
    
    Of course, the amnio won't get her a daughter, and she probably won't
    do anything with the information except process it.  Some people like
    knowing the sex in advance so they can either get excited or get
    prepared for not getting excited.
    
    I hope the base noter will respond to this note, but I can understand
    her reluctance because of the responses.
    
    Also, to the base noter.  There are other notes in this file or an
    earlier version that describes amnio in detail.
    
    judy
755.6My amnio experienceASABET::MACGILLIVARYFri Mar 08 1991 11:4219
    I had an amnio because of advanced maternal age.  It was strongly
    recommended by my doctor. I don't beleive that the insurance company
    will pay unless your doctor deems it necessary.  I'll tell you my 
    experience with the amnio.  The test itself was not painful in the
    least, I rested for the remainder of the day and felt fine. When I
    woke up the next morning, I had a slight brownish discharge and since
    I had not had any such discharge previously, I was sure the amnio was
    causing a miscarriage.  I went to the hospital, luckily baby's
    heartbeat was fine and it was suggested that I stay in bed for the next
    3-5 days, which I did.  The discharge continued off and on for a couple
    of days and then disappeared. Well everything has turned out fine so
    far. But I have to say those few days were the most stressful and
    worry filled days I have ever spent.  Would I have another amnio, if
    i were to have another child?  It might be doubtful. Would I have
    another amnio unless if it wasn't strongly advised because of age or
    other factors?  Absolutely not!  It is not worth the even very slight 
    chance of complications.  Just my opinion.
    
    Janet
755.7See note 121POWDML::SATOWFri Mar 08 1991 11:561
755.8Yes 100% accurate!UCOUNT::STRASENBURGHFri Mar 08 1991 13:0914
    To answer one of your questions. Determing the sex is 100% from having
    amino done. The liquid the take from you grows in a culture and it will
    show whether you are having a girl or boy.
    
    I had amino done in December, and I wanted to know the sex, I already
    have a beautiful son and I really wanted a girl (knowing I was only
    going to have two children).  Well guess what, I'm having another boy!
    
    Oh yes, I had mine done beacuse of age. and My insurance paid for the
    whole thing.
    
    I hope you get your girl!  I'm happy now that I am having a boy. 
    
    Lynne
755.9To each, their ownULTRA::DONAHUEFri Mar 08 1991 15:1214
    re: 8  I beg to differ, but my cousing had an amnio done, they were all
    prepared to bring home a son and guess what? They named her Katherine.
    
    I must admit, they _did_ go over board, painted nursery blue, had an
    "All Blue" shower, etc.
    
    It would be nice to have an idea of what the "experts" say you will
    have, but the real answer comes out in the delivery room.
    
    We didn't want to know the sex of our baby, we just wanted a healthy
    one. We now have a wonderful little boy who will be all of 5 months old
    next Friday.
    
    Norma
755.10TIPTOE::STOLICNYFri Mar 08 1991 15:2710
    
    RE: .9   Incredible!   I would have to guess that the error was
    on the part of the lab technician (or whoever does the work) and,
    as such, 100% accurate isn't a good way to phrase it.   The
    sex information is 100% available, the accuracy is 100% minus
    "operator error".   That the physical evidence indicted that the
    baby was a boy and it turned out to be a girl, just doesn't make
    sense in absense of an error.
    
    Carol
755.11ATLEAD::PSS_MGRDoes Fred Flintstone do his own stunts?Fri Mar 08 1991 15:285
    .9
    
    Are you sure you're not confusing Ultrasound with Amnio ??
    
    
755.12what I was told..RTL::ROLLMANFri Mar 08 1991 16:2936

My husband and I went for genetic counseling last May at Brigham and Women's 
Hospital in Boston.  Here's what I was told about amniocentesis (and CVS).

Amniocentesis can be done from 12 weeks gestation until sometime in the last
trimester.  The risk of miscarriage and/or fetal damage is about 1 in 400.  
This statistic is directly related to the skill of the doctor 
performing the procedure.  The more experienced the doctor, the better the 
ratio.  (I've wondered ever since where they get the women for interns and 
residents to practise on - but that's a different subject.)  (BTW, as a 
comparison, the chance of a Downs syndrome baby for a 38 year old mother is 
about 1 in 175, according to their statistics.)

There is also CVS (chrionic villi sampling - sampling of the placental villi). 
There are two different test procedures and can be done as early as 8 
weeks.  The risk of miscarriage/damage is closer to 1 in 50 and the accuracy of 
determining genetic defects is less (I think it was closer to 85% accuracy, but 
I don't remember for sure).  The lesser accuracy is due to the difference in 
cell development between the placenta and the fetus and the possibility of 
malformation in only the fetus or only the placenta.  I believe the accuracy for
determining only the sex was better.

The genetic counselor told us the amnio results would be > 99% accurate.
Some reasons for error were contamination of the sample, errors in sampling
(some maternal cells also gathered during the procedure), and number of 
gestational weeks.  Fetuses start shedding skin cells into the amniotic
fluid at about the 12-13 week; it is these cells that are cultured for
the chromosomal sample.  Sometimes the cells just don't grow.  This problem 
decreases with every week of gestation.

The counselor also told us to seriously consider what we would do with the
information provided by the test and offered additional counseling, should we
choose to take the test and receive results that indicated genetic damage.  They
don't just test for sex, they test for everything they can determine from a
chromosomal smear.
755.13STAR::MACKAYC'est la vie!Fri Mar 08 1991 16:2910
    
    In any medical test, there is a margin of error (5% or so max).
    Human can make mistakes and so can machines. I think most of
    the errors are cockpit errors. 
    
    
    
    
    
    Eva.
755.14no, it happensCSSE32::RANDALLwaiting for springFri Mar 08 1991 16:329
    I know a mistaken amnio girl as well.  Fortunately the parents
    were less gender-bound and weren't as shocked . . . 
    
    Apparently there's a particular genetic abnormality (XXY instead
    of XX? I don't remember for sure -- does one of the biologists
    here know?) that will show up genetically as male even though the
    child develops as a normal female.  
    
    --bonnie
755.15AKOCOA::MUNSEYSun Mar 10 1991 13:3410
    Denise,
    
    I had an amnio due to my age.  I would not have one just to
    find out the sex of the child.  They can be risky, and if there is no
    reason to suspect an abnormality, why take the risk.  I also found it
    to be extremely painful, due to the way the doctor had to insert the 
    needle (placement of the baby and placenta made it difficult).  It is
    not an experience that I would not care to repeat.
    
    Penny
755.16CVS got a bum rapSLSTRN::RADWINMon Mar 11 1991 12:4648
>>                       <<< Note 755.12 by RTL::ROLLMAN >>>
>>                             -< what I was told.. >-

>>My husband and I went for genetic counseling last May at Brigham and Women's 
>>Hospital in Boston.  Here's what I was told about amniocentesis (and CVS).
    
.......
    
>>There is also CVS (chrionic villi sampling - sampling of the placental villi). 
>>There are two different test procedures and can be done as early as 8 
>>weeks.  The risk of miscarriage/damage is closer to 1 in 50 and the accuracy of 
>>determining genetic defects is less (I think it was closer to 85% accuracy, but 
>>I don't remember for sure).  The lesser accuracy is due to the difference in 
>>cell development between the placenta and the fetus and the possibility of 
>>malformation in only the fetus or only the placenta.  I believe the accuracy for
>>determining only the sex was better.
    
    I really wonderr about the accuracy of the information you were given
    in regard to the CVS procedure.  My wife went through a CVS last
    year.  Beforehannd, we reviewed the background info on it pretty carefully.
    The literature we read, based upon a sample of some 70,000 CVS's,
    indicated that the procedure was no more risky than an amnio.   
    
    Also, I don't understand how the procedure could provide less accurate
    genetic information than an amnio.  The placenta and the fetus both
    develop from the same fertilized egg.  The genetic composition of the
    placenta would be exactly the same as the fetus.  Perhaps, there are
    differences between an amnio and CVS in how the harvested cells are
    cultured and grown.  This might affect a lab's ability to "read" the
    genetic info.  
    
    I am struck by the fact that you got your info at Brigham & Womens. 
    When my wife had her CVS, her MD. wanted to have the procedure done at 
    Beth Israel [BI], but our HMO would only pay for it at Brigham and 
    Women's [BWH].  When we looked into the matter (my wife is a nurse with 
    many connections in Boston area hospitals), we learned that the BI Dr. was
    an expert in CVS and had performed, at the time, over 300 such
    procedures.  BWH, on the otherhand, specialized in early amnios, not in
    CVS's.  The two MDs who did CVS's had each done less than 30 of these.
    
    Needless to say, my wife had the CVS done at BI, and then we "fought"
    our HMO to pay for it. They ended up paying us 75% of the bill.  The
    amount was much as it would have cost them if we had gone to the other 
    hospital.
    
    Gene
    actually specialized 
    
755.17RTL::ROLLMANMon Mar 11 1991 14:5830

RE: -1

That *is* interesting.  Clearly, you know more about CVS than I do.  If I had
chosen to do a CVS test, maybe they would have sent us to Beth Israel?  Perhaps
they were providing statistics only for Brigham and Womens' ?  That would 
account for the differences in information.

Here's how the accuracy was explained to us.  At an early point 
in the development, the embryo cells split into two groups, one for the embryo
itself and the other for the placenta.  Then the cells of each group 
differentiate according to function.  

Suppose some cell in the placental group mutates.  Then, if the villi sample
is taken from that part of the placenta, the test results would indicate
damage, even tho the embryo is fine.

It could also happen in reverse, where the embryo has damage, but the placenta 
does not.  Then the test results would indicate no damage.

Amniocentesis tests the embryo, not the placenta, so this testing error cannot
happen.


It makes sense to me that the testing error is less likely, if not impossible,
in hereditary genetic encodings (like hemophoelia), than in environmental 
encodings (where genetic changes aren't the result of heredity - maybe caused
by excessive alcohol use, for example).

755.18Amnio or ultra sound??ULTRA::DONAHUEMon Mar 11 1991 15:119
    re: 11

    Yes, I'm quite sure it was the amnio that determined the sex. That is
    why they were so shocked when they had a little girl instead of a
    little boy!

    better them than me... :-)

    Norma
755.19My experienceICS::WAKYOnward, thru the Fog...Thu Mar 21 1991 14:546
I had an amnio in December, around the 18th week, recommended due to maternal
age.  It was not painful at all for me.  They did the sex test, but I chose not
to receive the results.  After the test, I was leaking some amniotic fluid and
had to stay in bed for 2 days, which was boring and very scarey, but everything
is fine; I guess the sack just seals itself back up if you let it rest...

755.20how long before amnio results available?LILAC::STHILAIREThu Apr 11 1991 18:519
     General amnio question.....
    
    How long did you have to wait before you heard back on the results
    (genetic type) of your amnio?  I've been told two to four weeks,
    depending on numerous things.   I'm trying to find our if MOST people
    hear closer to the 2 week mark or the 4 week mark.
    
    Thanks - Tricia
      
755.21Time depends on lab's workloadWORDY::STEINHARTPixillatedFri Apr 12 1991 12:0626
    I had my reply in 10 days, from Dartmouth-Hitchcock in Hanover, NH. 
    I've heard of longer periods of waiting from other places.  Our other
    choice was Brigham and Women's in Boston.
    
    I believe the wait period is due solely to how busy the lab is.  The
    lab processing for amnio is very labor intensive; a skilled person has
    to break up the chromosomes, count, and examine them, and document the
    results.   It takes a set amount of time to culture the fluid (I
    think).  The rest is waiting in the queue for a lab technician, and
    then the time for the technician to do analysis.  I don't think it
    would vary much depending on what they're looking for.  (If I
    misunderstand, maybe someone who's worked in a lab will correct me.)
    
    Before scheduling an amnio, I would certainly inquire about the current
    time people are waiting for results.  This is one test in which time is
    absolutely of the essence, since you are already in your fourth month.
    
    I had mine exactly a year ago, on Boston Marathon day! (coming up
    Monday)  We went to Hanover because traffic in Boston would've been a
    zoo.  And you have to make a second trip, for the counselor to give you
    the detailed results.  (She gave us a quick "all okay" over the phone. 
    I started crying with happiness and relief, pulled out the prayer book,
    and gave my deepest thanks to the Almighty.)
    
    Good luck!
    Laura
755.223 weeks and a dayULTRA::DONAHUEDaniel is 6 months old, already!Fri Apr 12 1991 14:518
    I went to Emerson Hospital for mine. It took three weeks and one day
    for the results to be known.
    
    After that, I started to _enjoy_ the pregnancy and the thought that I
    was actually carrying a child!!
    
    Best Wishes!
    Norma
755.23What are they checking for??BCSE::WEIERPatty, DTN 381-0877Fri Apr 12 1991 17:334
    I've had 3 amnios to check for lung development.  All 3 had the results
    in hand by the next day at the latest.
    
    Patty
755.24Genetic testingTAKEIT::STHILAIREFri Apr 12 1991 18:3120
    
    Patty,
    
    As mentioned in my request for info, we are awaiting results for
    genetic testing from the amnio.
    
    
    Laura, 
    
    I also had my testing done at Dartmouth-Hitchcock in Hanover.  Did
    you deal with Ilene Rawnsly (not quite sure of spelling)?   She
    explained that the length of time was determined by the quality of 
    cells contained in the sample, the number of cells in the sample and
    how quickly the cells themselves cultured?  I would assume these things
    combined with the status of the lab as you mentioned would determine 
    the length of waiting time.  We've only been waiting 10 days, but it
    seems like forever....
    
    Tricia
    
755.25SLSTRN::RADWINFri Apr 12 1991 18:3612
    As suggested in .23, there's a significant difference in the use of 
    amnios to check for lung development and for genetic problems.  
    In the former case, they're checking the fluid for the amount of a 
    particular chemical, sufactin (sp?).  This amount can be guaged pretty 
    quickly -- within an hour or two based on my wife's experience.   
    
    When it comes to using amnios to check for genetic problems, the process 
    involves growing cells, distilling out chromosones, and then examining 
    these.   And as others have noted this can take days, if not weeks.
    
    
    Gene
755.26What will we tell them when they're older?TNPUBS::STEINHARTPixillatedMon Aug 26 1991 16:0125
    Has anyone thought about telling their teenage children about their
    amnio?  I know this is a long way off, since amnios are a recent test
    (right?) and the children are all pretty young.  But I think about it
    sometimes, and was wondering if anyone else has.
    
    This all started when I discussed Ilona's baby book with my aunt.  I
    said the day I got the amnio results was the happiest day, rather than
    the day I knew I was pregnant.  She said I should write that down.  I
    said it didn't seem appropriate.  What if Ilona asked me, "If I had
    Downs, would you not have had me?"  What if she thinks my love for her
    is conditional?  
    
    My aunt said I should tell her that I was overjoyed, and that Ilona
    will be satisfied with that.
    
    There was a point in the TV show Life Goes On, when Corky, who has
    Downs, wonders whether his mother is sorry she had him.  
    
    Will our children who don't have Downs, and might have been rejected
    before birth because of it, wonder about our acceptance of them?
    
    Maybe I'm being overly analytical, and worrying about something that
    won't happen.  But what do you think?
    
    Laura
755.27]PROSE::BLACHEKTue Aug 27 1991 13:3610
    Laura,
    
    I think you could tell her that you wanted to be prepared for her, in
    case there was something wrong.  You don't need to get into the details
    about what you would have done with the information.
    
    I know people whose Mother's considered abortion.  They seem to view it
    as being happy to be here, and it hasn't affected their self-esteem.
    
    judy
755.28A little different, but the same....BCSE::WEIERPatty, DTN 381-0877Tue Aug 27 1991 14:3632
    Laura,
    
    I didn't have the exact same situation, but because of my diabetes,
    they were concerned about serious heart defects.  At 23 weeks preg.,
    they did an 'intense' ultrasound to examine the heart.  I never thought
    about telling Jason anything about this - not intentionally hidden,
    just a part of the pregnancy.
    
    I think that, when it comes up, I will just tell him what we felt. 
    Had the test come back positive (bad) that we probably wouldn't have
    had him because we wouldn't have wanted him to spend a life of
    suffering and pain.  That we weren't sure WE were strong enough to have
    been able to care for him, given the extent of the possible
    complications.  
    
    I don't know what I'd have done if the test was positive .... 23 weeks
    is pretty far along to have been able to terminate the pregnancy -- but
    the thought of INTENTIONALLY making someone's life(his) be complicated with
    all of the anguish that goes along with a birth defect, was more than I
    think we could've inflicted on him.  Some things were meant to be,
    others weren't.
    
    Also ... by the time your daughter is old enough to really understand,
    when she wants to get pregnant, she may be walking into a clinic or
    hospital somewhere and picking out exactly what she wants her baby to
    look like, girl/boy, and everything else .... to want to know if your
    baby is healthy or not is going to seem like a very normal thing to her
    by then.  To consider not finding out will probably seem very bizarre!
    
    Be at peace with yourself, and she too will accept it peacefully.
    
    
755.29ThanksTNPUBS::STEINHARTFri Sep 13 1991 11:529
    Although this is a bit belated, thanks to Judy and Patty for your
    responses.  Also, thanks for a good laugh!  You are right.  Twenty
    years from now, they'll probably be able to test for eye color and
    mathematical aptitude!  -;)  The ethical issues will continue to get
    even more complex.  (Though I do hope there are some acceptable ethical
    answers, too.)
    
    Take care,
    Laura