Conference moira::parenting

    All I can say is we twice chose amniocentesis over CVS, due to
    the higher risk of miscarriage.  If the probability for a bad
    result leading to an abortion were large, however, I'd go with
    the earlier result from CVS--with an anmio you don't get results
    until 18 to 20 weeks, which is pretty far along.  If the
    result is "ooops, we need to try again", then the second amnio
    won't give results until the third trimester, when abortion
    is far more stressful and legally and morally and medically
    more tricky.
    
    A lot depends on what you're going to do with the information
    when you get it.  We had _long_ discussions about that before
    we decided to get an anmio at all.
    
    		-John Bishop

    I just asked my doctor about this because I am scheduled for amnio in
    two weeks (my second time - worked fine with the first pregnancy).  I
    was curious about trying CVS this time.  My OB told me that it doesn't
    check for all defects, as the base noter said, and in some cases the
    person may still need an amnio later, which defeats the purpose.
    
    Here is CA, I would have to travel to San francisco to get the CVS
    test, as it isn't given everywhere, whereas the amnio is done by my own
    OB in her office.
    
    I agree that it would be better to get the test results earlier, but
    amnio still seems the preferred test for me.
    
    Mary
    

If CVS is the one I am thinking of, our doctor highly recommended against it
because he said that it had a higher risk of miscarriage/incorrect results 
than did the amnio.  He said the amnio has something like a .03% chance of 
miscarriage now, rather than the much higher risk it used to have.

I'm afraid I don't remember much about the conversation, mostly just that
when we heard what he had to say, we opted against the CVS.  Now it looks
like we probably won't need an amnio, either.

Good luck in your decision.

         Carol

    
    Like another noter said it may depend on the situation.
    
    When I came to that point CVS was not even brought up by
    my doctor but my girlfriend had 2 friends who had it and
    did miscarry. A man I work with wife had it with no problems.
    
    Amnio is less risky but as said the results come later.
    Good luck to you.

We talked with our regular Ob/Gyn recently about the various tests.
She, too, didn't recommend CVS.  She did offer to do AFP (alpha feta protein?)
and Shellie is thinking about it.  Shellie has decided not to do an amnio
because the risk of miscarriage from the amnio is higher than the risk
that they will find Downs.

      Carol

This note is being entered for another member of our community who wishes
to remain anonymous.

    Carol duBois, PARENTING co-moderator

************************************************************

I just went thru this decision and chose early amnio.

I wanted testing because I'm 40.  Chance of Down's at my age is 1 in 100, same 
as the miscarriage rate for CVS and early amnio.  (BTW, don't know what I will 
do with the results, still waiting.  Lots of thought, but no decisions. 
Perhaps I won't have to decide.  Nervous, but, if this were a lottery ticket
and I had a 1 in 100 chance, I wouldn't win.) 

Info follows from talking with the genetic counselors at Beth Israel and 
Brigham&Women's, both Boston hospitals.  (Note that Beth Israel has more 
experience at CVS and Brigham&Women's has more experience at early amnio. 
There is bias at both places, so if you call them, double check what they tell
you against their perception of the other hospital.  They were honest and fair
in their assessments of the other places when I spoke with them.  Phone numbers
at the end). 



The miscarriage rate is about the same for CVS as for early amniocentesis, 
quoted at 1%.

CVS is done in weeks 9-11.  Early amnio is done in weeks 13-16; it's considered 
"regular" amnio after that.  Beth Israel does CVS (9-11) and amnio in the 
15-16th weeks.  Brigham&Women's only does amnio (they stopped doing CVS last 
year), and they will do it in the 13th week, but prefer to wait until the 14th
week.  (An aside - Matthew Thornton in Nashua,NH will do amnio in the 16th
week, period). 

CVS used to be done earlier, as early as the 5th week, however they have found 
that 1 in 200 babies are born with jaw abnormalities when CVS is done before
the 9th week.  (Only babies with whom CVS was done were counted in the
statistic). This was reported by BI. B&W also mentioned some evidence of limb
defects, but didn't quote a statistic. 

Amnio can't be done before the 12th week, because it consists of taking
amniotic fluid and then culturing cells that the baby has shed into the fluid. 
The shedding doesn't begin until about the 12th week.  Sometimes a test must be
repeated because the cells don't grow. 

CVS test results were quoted to me as 8-10 days.  Early amnio results were 
quoted as 2-3 weeks.

CVS samples the villi of the forming placenta. I don't think the cells require 
culturing, must be they collect enough.  The cell nuclei are broke up and the 
chromosomes collected.  Then they are looked at under an electron microscope to 
find abnormalities.

There is a greater chance for error with CVS, because the sample is taken from 
the placenta, not (indirectly) from the baby itself.  If a genetic error 
happened in the group of cells that are going to form the baby or the group of 
cells that are going to form the placenta *after* the split occurred, the 
results would not reflect reality.  This was quoted to me as about a 1% error 
for mosaicism (when the baby has an extra sex chromosome).

In both tests, the more experience the doctor has, the less possibility of 
miscarriage.  BI reports the doctor has done over 500 CVS's.  B&W has multiple 
doctors doing amnio, so the statistic varies.  I would ask about the doctor's 
experience when setting up a test with B&W.

Amnio is done by inserting a needle thru the mother's belly into the amniotic 
sac.  One doctor runs the ultrasound and tells the other doctor where to go, 
etc.  Surprisingly, it doesn't hurt (personal experience - twice).  It *is* 
uncomfortable, but I would not describe the feeling as pain.  It took a couple 
minutes for the first (baby kept moving around), and less than a minute for the 
second (cooperative baby).

CVS can be done by passing a needle thru the mother's belly OR going thru the 
vagina. I can't report on how it feels or which BI does.

Amnio can test for neural tube defects, because the amniotic fluid contains the 
same protein (AFP) that they test for in blood.  Amnio is 95% accurate at
identifying neural tube defects, the blood test is 80% accurate.  Can't tell
you why. 

I chose amnio because the error rate and the defect rate.  Also, the midwife 
said she is not wild about CVS because there seem to be problems cropping up in 
the literature that have not yet been investigated enough.

Phone numbers of interest if you're in the Boston area:

Beth Israel Genetic Counseling:  (617) 278-7110
Brigham&Women's Genetic Counseling: (617) 732-7771 (press #2)

    I think I mentioned it in the previous PARENTING, but it is so
    important I'll say it again:
    
    If having the earliest possible results is important for you, inquire
    about the hospital's turn-around time on your amnio sample (or CVS I
    assume).  
    
    Not only do hospitals perform amnios in different weeks, but their
    speed in analyzing the sample (after it is cultured) vary widely.
    I assume this relates to the volume of samples and the size of the lab
    staff.
    

    I was 35 when I was pregnant with my son.  I had amnio at 16 weeks and
    received the results in a little less than 2 weeks.  Everything was
    fine.  I am now 37 and am expecting twins.  I had amnio at 16 weeks
    (2 needles because each baby is in their own sac).  I chose amnio over
    CVS because of the vast difference in miscarriage rate.  Also, if they
    suspect Downs with CVS, they usually recommend an amnio anyway. 
    Anyway, everything is fine again, and we got the results in 11 days!
    
    BTW I'm having 2 girls this time around.  

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

Carol Stolicny, PARENTING co-mod

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

        I'm currently  six  weeks  pregnant  and have a few questions for
        people who have had experience with an amnio.

        I'm wondering if the risk of miscarriage associated with an amnio
        is related to the risk  that  you  would  miscarry  normally (ie.
        previous miscarriages, family history)?  Can  you say that if you
        are at no normal risk, the amnio is more likely to go smoothly?

        I know that having an amnio is the  right  decision  for  me, but
        what do you do about the long wait and  the  fear  that the amnio
        could  abort  a healthy baby?  I'd be interested in  knowing  how
        others  felt  after making the decision to have an amnio and  how
        you dealt with anxieties that came with the decision.

        Thanks,
        Anon

RE: .9

I have no statistics for you, but our doctor did tell us that there
seems to be a correlation between post-amnio miscarriages and fetuses
that have genetic abnormalities.  In other words, you're more likely
to miscarry if there's something "wrong" with the pregnancy
to start with.  You might ask your doctor for the statistics.

Along the line of risks, Brigham and Women's wouldn't do the amnio for
me until week 16 because of my history of miscarriages.  Apparently
they feel the procedure is "safer" by week 16. I'm sure your doctor
could provide statistics for this, also.

RE: dealing with the fears.  We based our decision on my age, on the
emotional support we got from various sources, and the fact that we
knew we'd want the information if there were abnormalities.  I had
no clear decision of what I'd do if there were abnormalities.  I just
knew that I'd want the information. The person who really swayed me
in the direction of having the test was our Episcopal priest.  While
he didn't push us to have the test done, he listened to our worries 
and concerns, and made it clear that he'd be there to talk with and 
to provide emotional support in any decisions we had to make.
His concern helped me realize we surely wouldn't be in this alone.

We decided in advance to NOT tell our parents we were having the test.  
Both mothers are highly prone to worrying, which in turn usually 
increases our anxiety. I think not telling them was a wise decision.
Our test results were fine, and we did tell them the results once the
whole thing was over.

Hope this helps.

I've had amnio twice now.

I can't answer your first question about the miscarriage risk - it's a 
good question - ask the genetic counselor before you make the appointment.  My
guess is that there is a correlation, but that's just an ignorant opinion.

For the second question - first, you can reduce the risk of miscarriage by
making sure the doctor doing the procedure is experienced.  Most places have more
than one doctor who does amnio - when you make your appointment, tell them you
want the most experienced doctor, and be flexible so as to get that
person.  Ask them how many times he has done the procedure.  If they don't
know, ask them to find out or get the doctor's name and call his office directly.

Second, the miscarriage is most likely to occur during the first 48 hours after
the procedure.  You can decrease the risk by resting and reducing your activity 
for the 24 hours after the procedure. (I did not lift my 25 pound daughter for 
24 hours - and I took that day off from work, housework, etc).  It is normal to
feel sore and a bit of very light cramping.

You have to assess the risk of amnio against the risk of what you're testing
for.  The genetic counselor will help you figure it out. 

For example, at my age (40), the chance of the baby having Down's Syndrome 
is 1 in 100.  That is the same as the risk of miscarriage from the amnio. When I 
did it two years ago (at 38), the risk of Down's was 1 in 175. We chose to risk 
miscarriage to find out whether the baby had Down's Syndrome (she didn't, BTW, 
and neither does the one I'm now carrying), the only likely abnormality in our
case.  Others have assessed similar data and have chosen not to take the risk 
(one of the previous replies?).


The real anxiety comes while waiting for the results.  It helps a lot to have it
clear in your head what you will do with the information, if it turns out that
the baby has a genetic abnormality.  Some people consider abortion an option;
that's a very personal question and you need to discuss this in advance with your
partner. (You certainly don't need to find out you are on different sides of the
abortion issue when such a decision is possible).

As my husband pointed out when we were deciding whether to do amnio - 
whether we chose to terminate or not, at the minimum, we would know that we 
would be raising a "challenged" child and could become educated before the baby 
was born.  I also believe I would have been able to do most of my grieving in 
advance and be genuinely happy when she was born.  We were lucky enough not to 
have to face any of these issues.

Good luck.  The waiting is hard, but not as hard as parenting.

Pat

    I'm 36, and we decided to have an amnio too.  It was recommended
    because of my age, and the risk of having a Downs Syndrome baby was
    a little higher than the risk of miscarriage.
    
    I was very nervous (and I thought it was VERY uncomfortable!!) both
    during and after the procedure.  I got my results in 10 days, and
    everything is normal.  Dick and I never really talked at length about
    what we were going to do if something was wrong, so we were lucky not
    to have to face that.
    
    I think that if you know that you will abort if something is wrong,
    then go ahead and have the amnio (HCHP would not do the other test --
    it was too risky).  If you are going to have the baby anyway, then 
    don't do it.
    
    In some ways, I wish I hadn't.  I was so scared afterwards that
    something would happen. 
    
    Jen
    
    P.S.  I didn't find out the sex, although  I'm weakening!
    

Thought noters would be interested in a recent report on risks 
associated with Chorionoc villus sampling (CVS) from the Journal of NIH 
Research (July '92).

CVS is a procedure which many pregnant women, including my wife**, have used or 
may plan to use. A CVS yields information similar to that of an amniocentesis,
but a CVS can be done earlier in a pregnancy.  A CVS involves taking a small 
tissue sample -- and not a fluid sample as in amnio -- from the outermost part
of the placenta, the Chorion.

Two recent studies found that CVS's may -- emphasis on MAY -- be associated 
with fetal damage: shortened fingers/limbs, malformed/missing nails, cleft 
palate, and/or small chin/tongue.  Speculation is that in rare cases the CVS 
causes bleeding in the Chorion and that this bleeding disrupts blood flow to 
the placenta which, in turn, impacts fetal development.

It is not definite yet that the CVS is the cause of these problems.  In 
fact, the original studies of CVS safety did not identify such problems.  NIH 
is now trying to identify what studies it needs to conduct to determine if a 
CVS poses a risk and, if so, how much.  The recent studies suggest the 
risk is between 1 in 100 and 1 in 1000.

NIH is not now recommending that the CVS's be suspended; simply that women 
be informed of the conflicting results.  

--------------------------------------------------------------------
    **Our two year old does not evidence any problems from the CVS my wife 
      had.

    I have a beautiful, creative, energetic, intelligent 2-year old
    daughter and she has Down syndrome.
    
    I did not get any prenatal genetics testing done.  I was 28 when I
    became pregnant and was not considered at a high risk.  I do not know
    whether I would have had an abortion or not, had I known.
    
    But, I am so thankful that I did not terminate the pregnancy.  She is
    the very best thing that has ever happened to me.
    
    No, it was not easy.  I had to let go of a lot of ego-centered
    expectations for her.  
    
    I am personally pro-choice.  But, chosing based on ignorance is no
    choice at all.  If genetics tests come up positive for Down, you may
    want to consider attending a local Down syndrome association and
    meeting some of the children and adults with Down.
    
    My daughter is a complete, whole, worthwhile person.  I expect her to
    enjoy a wonderful and enriched life.
    
    I do not plan on having either CVS or amnio done when I have more
    children.  After Bridgitte, I know within my deepest self that it is
    safe to accept my children, in unconditional love, completely as they
    are.
    
    Ruth Fannin
    DTN: 592-4516

    I'm having the afp test soon - thanks .14 - your note will
    inspire me to not worry about the results.  I am having the
    test because if the results are unusual my doctor will then 
    recommend a very detailed ultrasound (not amnio, unless I
    want it...) in which most    
    		       - heart deformations
    		       - open spine
    can be seen.  then special preparations can be made like
    		       - give birth in a special hospital
    		       - plan a cesarean
                                        

    .14 
    
    What a wonderful note! Bridgitte is a lucky girl, and I for one
    got a lot out of your note.
    
    Lucy

    My wife and I are also pondering whether to have an amnio test.  Some
    statistics that our doctor offered:
    
    o About 65% of miscarriages are linked to a genetic condition.
    o The majority of the genetic conditions would have resulted in Downs
      Syndrome.

I was at my doctor's yesterday for my first pre-natal appointment.
She said that they are offering a new test for screen of possible
Down Syndrome and/or Neural Tube defects.

I'd like to include the text of the leaflet she gave me as a general
information for those of you who haven't heard of this yet. Please
remember that we live in Ottawa, so some of the testing available in
different areas may not be the same.

BTW: it does go into basics, so try not to get too turned off by
the very elementary tone of the message.

               ===================================

	MATERNAL SERUM SCREENING
 	------------------------


If you are pregnant or planning to get pregnant, this pamphlet answers
questions about Maternal Serum Screening (maternal means mother; serum
is part of our blood). This is a blood test available to all pregnant
women as part of prenatal care. It is your choice to have Maternal Serum 
Screening. If you decide not to have it, this decision will not affect
your medical care in any way.

Maternal Serum Screening is called screening because it is different from
a diagnostic test. Screening show who might have a higher or lower chance
of having a certain medical problem. Diagnostic tests show who actually
has the problem.

The developing baby is called a fetus. Maternal Serum Screening can tell
you if your fetus has a higher or lower chance of having either an
open neural tube defect or Down syndrome. These are explained on the next
page [*I have decided to omit the explanations - but will add them
if anybody wants them*]. Maternal Serum Screening cannot tell if the 
fetus actually has an open neural tube defect or Down syndrome. Only
further testing can show that.

Most babies are not born with Down syndrome or a neural tube defect. Since
these problems can cause serious disabilities, some women want to know
ahead of time what they are facing so they can learn about all their 
choices and what help is available. Some women don't want to know if 
their fetus has one of these problems until delivery. These women might
decide not to have Maternal Serum Screening.

For Maternal Serum Screening, a small sample of the pregnant woman's 
blood is taken. The amount of certain substances in the blood is measured.
The substances are called estriol, alpha-fetoprotein (AFP) and chorionic
gonadotropin (hCG). These are produced by every fetus, and are found in
every pregnant woman's blood. When the fetus has either Down syndrome or
an open neural tube defect, there can be an unusual amount of the
substances in the pregnant woman's blood. The purpose of Maternal Serum 
Screening is to find out which women have an unusual amount of these
substances in their blood.

A Negative Result:
The result is called negative when the blood contains the usual amount
of these substances. About 92 out of 100 pregnant women have a negative
result. This means that the chance of their fetus having Down syndrome
or an open neural tube defect is small. Most times no further testing is
needed.

A negative result is not a guarantee that the fetus is normal. Some cases
of Down syndrome and open neural tube defects are missed by Maternal 
Serum Screening. In addition Maternal Serum Screening is looking for 
only these two problems. Other problems which the fetus might have 
cannot be found through Maternal Serum Screening.

A Positive Result:
The result is called positive when the blood contains an unusual amounts 
of these substances. About 8 out of every 100 pregnant women have a 
positive result, most times the fetus does not have Down syndrome or an
open neural tube defect. The unusual amount is for unknown reasons. If you
have a positive result, it only tells you the chance is higher that
your fetus could be affected by one of these problems.

If the result is positive, most fetuses do not have a problem. Your doctor
or midwife will explain what your result means for you. In addition, you
can get a referral to your regional genetics centre where you can talk
about things further. Make sure all your questions are answered.

You will be given choices about further testing. Whatever you decide 
is up to you. Knowing what to do next can be difficult.

One of your choices is: Do you want further tests? If you do, these
tests can tell you if the fetus really has one of these problems. Each
woman will be given choices about different tests, depending on her
result. These choices include the following tests:
 	- ultrasound
	- amniocentesis
	- a second blood sample

The further tests usually show that the fetus has neither of these 
problems. The positive result of the Maternal Serum Screening was for 
some unknown reason.

Maternal Serum Screening will not be done unless you want it. If you 
decide to have screening, talk to your doctor or midwife. he or she
will arrange it for you.

The timing is very important. The best time for Maternal Serum Screening
is when you are 16 to 17 weeks pregnant. It should not be done before 
15 weeks or after 20 weeks.

[*sections omitted from the pamplet: What is an ultrasound; What is 
Amniocentesis; Down Syndrome; Open Neural Tube Defects; locations of
genetic centres in Ontario *]

          ================================================

In a frank discussion of this test with our Doc, she said the following:
    
- Its been available for only 3 months in her office

- only 40% of her clientele have elected to do the test and none were positive.

- This test is good for women who are members of families that have 
  had one or more babies with these problems.

- It is directed at women in their 20's since those in their 30's 
  (and those over 35 usually have amnio) have less babies. So, the 
  there are more childen with these problems born to mothers in their 
  20's.

- there seems to be a correlation between age and false positives - 
  since I will be 35 during this pregnant she does not recommend this 
  test for me.

- She said that a positive and the recommended amnio after does have its
  1 in 200 risk of miscarriage.

- In order to insure proper age of the fetus and extra ultrasound has 
  to be performed around 16 weeks (and then the next at 18 weeks because
  she said the 16 week one would be too young to yield the information
  they need at 18 weeks).

- She also mentioned that a positive, then a booking and taking of the 
  amnio and its results puts a positve result for Downs or open neural
  at past 20 weeks. This is NOT a good point to begin thinking about
  terminating the pregnancy.

All in all we've opted not to have this test, but I thought I'd let
everyone know that its out there.

Monica
    

Monica,

This sounds like the AFP test that has been available here in the 
states for quite a while - at least since my first pregnancy
4 years ago.

I wonder if this is the same test, or perhaps an improved
version of the AFP test?.

- Carol  

    
    This sounds like the Bart's test (see my note in the previous volume of
    Parenting) which is now more widely available in the UK.
    
    I had the Bart's test and it proved that the hospital's AFP test was 
    faulty. The test result proved that amnio was not needed.
    
                 Celia
    

There was a story on the 6:00 news last night about a new blood test that
can check for fetal abnormalities (genetic defects, I think) and has no
risk of miscarriage. They were comparing the risk of miscarriage to that
of an amnio, so I got the impression that it finds similar defects as an
amnio, but I didn't see the whole thing.  They talked about how fast this
test is (i.e. one woman had the test done and had the results back in 14 
hours), and how accurate it is. I caught the tail end when my husband yelled
upstairs that it was on. Turns out the doctor who was being interviewed was
Dr. Bianchi who was Brad's first neonatalogist, and who is the person we
credit with having him here today.  She's one sharp lady, and was doing 
research back when she had Brad, but is also part of the Joint Program for
Neonatalogy so did a rotation at Brigham which is how we got her as a 
doctor.

From the snippet I caught, it certainly sounded like a promising test.

Cathy

    What I heard is that there's some substance that can latch onto
    the 1 fetal blood cell in a million of the mother's blood cell. 
    ( I forget if the substance is a protein or an antibody). It may
    even be 10 million maternal blood cells. Anyway, the tagged cells
    can be separated out, and then tested.
    
    Sue
                                                               

The following is being posted for a member of the PARENTING notesfile
community who prefers to remain anonymous at this time.   If you wish
to contact the author by mail, please send your message to me and I will
forward it to the anonymous noter.    Your message will be forwarded with
your name attached  unless you request otherwise.

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

Earlier this week I had amnio done at 14 weeks.  I was told before the
appointment that the primary risk at this point would be the inability to
draw fluid due to the potential lack of fluid so early in the process.

The ultrasound indicated a large amount of fluid and plenty of room to
insert the needle.
The first time the doctor inserted the needle I was in excrusiating pain.
It felt like he stuck me with a chisle.  He was unable to draw fluid because
he couldn't pierce the membrane.  He tried again (inserted a different needle)
and the second time I felt a small pinch from the needle and nothing else.
Again he couldn't penetrate the sac.  At that point he said to wait until
week 15.

I asked him why the membrane couldn't be penetrated and he said he has never
seen anything like this.  I asked him of he could discuss it with his peers
to see if anyone else had this experience.
He had no explanation.

Later that day I had cramping and slight spotting which he said was normal.

Now, I am not sure what to do.  I had wanted the test early so I would have
time to react to the results if they were negative.

He called me last night to say he could try only one more time and there is
still the chance that the test may not be able to be performed successfully.

Has anyone else heard of anything like this?

Sign me 40 and worried.

    I had the same experience.  At the time, the doctor told me that
    sometimes the membrane is just too tough.
    
    I had the procedure done the second time and there were no problems.
    I was also a bit more relaxed the second time because I already
    knew what to expect.
    
    The first time I was 14 weeks, the second was 16 weeks.
    
    I'm not sure if the doctor's reason was correct or even scientific,
    but that is what he told me -- tough membrane.
    
    Good luck,
    Diana

    I had this happen to me also at week 14. The doctor tried 3 insertions
    and the last one was with a longer needle. The reason I was given was
    that the needle could not reach the uterus. I was told to come the next
    week. I questioned whether the uterus would grow enough in one week and
    the answer was yes...the uterus grows quite a bit each week. The area
    of my belly where the needle was inserted 3 times felt sore for about 2
    days, but there was no leakage or spotting. Of course everyone
    experiences different side effects. 
    
    Week 15 came and the ultrasound technician measured the depth from the
    belly to the uterus. (this was done the first time also) The doctor
    asked for a longer needle than what came in the amnio kit. This attempt
    was succesful with plenty of fluid drawn. I could feel & see the
    needle in the ultrasound. There was some cramping during the procedure
    but no pain per se. I just held onto my husbands hands real tight and
    thought about other things....There were no side effects this time. No
    soreness, no leakage, no showing.  
    
    The results came back exactly 2 weeks later. All testing came out
    normal. 
    
    Mrs �&� 

This may sound trivial to those of you who have already been
through it - but I am *petrified* of having somebody stick a 
large needle into my belly - especially so close to my baby.

Does anybody know what the cutoff is for when most doctors
recomend amnio?  For example, if I get pregnant at 34 but
the baby isn't due until after I turn 35, are they going
to try and stick that horrendous needle into my belly?

Also - how important is getting an amnio?  Couldn't 
one just have the AFP test - and then only have the
amnio if the AFP suggested a problem?

- chicken

    re .26
    
    I opted not to have an amnio or the AFP test, although I was past the
    cut off date with Atlehi, after a long talk with my first OB.  We
    discussed both the risks of the tests and of not getting the tests
    done, as well as my family history.  We have a long history of
    "late-life" pregnancies on both sides of my family with no problems. 
    This goes back four generations on mom's side and 3 on my dad's side,
    so to me this is normal.  The "OB from hell" that I wound up with due
    to an insurance change had a complete fit when I told her I had opted
    not to have these tests done, but it was too late for her to do
    anything more than complain.
    
    After a thourough discussion of odds, probability, and a long
    discussion with Frank, we decided to leave this in the hands of fate
    and opted not to have the test.  While the AFP test is fairly
    non-invasive, I also opted not to have it, as there is a high rate of
    false results, and I didn't want to go through a pregancy scared to
    death, if the test pointed toward potential problems.
    
    I guess it is up to you.  My OB said his risk cutoff point was 35 at
    conception as that is where the risk of miscarriage from the procedure,
    to the risk of chromosonal anomalies, if there is no previous history.  
    He also mentioned that they factor in the age of the father, as if he 
    is over 50 there is also an increased risk for anomolies.  
    
    Something he also noted, while the risk for down's syndrome is higher
    for women over 35, the majority of babies born with chromosonal
    anomolies are to mothers under this age.  One advantage to having an
    amnio done is that if there are anomolies of a non-fatal nature, you
    can prepare in advance, and if there are pediatric concerns, they can
    also be ready to handle them at birth.  
    
    It really is a personal choice.  I would go with your feelings, as you
    are the only person who can make this decision.  To me it would be like
    opening a present before solstice, but for others this information is
    more important.  My decision might be different if I had been much
    older, but I will cross that bridge if and when I come to it.
    
    Meg      

    
    You have the right to refuse *any* medical procedure, BTW.
    
    

    I certainly can relate to your hesitancy about the
    "needle_in_the_belly" aspect of this procedure.  Having experienced it,
    however, I can share some information that might help you a bit.
    First of all the needle isn't really all that LARGE and is very thin
    so as not to make much of a hole.  Second, they check out the baby's
    position via ultrasound prior to insertion to find the "best spot".
    They are also watching via ultrasound throughout the whole process.
    I know that everyone's experience is different, but it really wasn't
    as horrific an experience as I imagined.
    
    I am 37 now and could possibly be 38 when I deliver ( baby's due 2 days
    after my birthday ) so I'm not sure at what age doctor's begin to
    recommend amnio routinely for age reasons.  It is important that it
    is only a recommendation, and I never felt pressured by my doctor's
    in any way.  You need to weigh your desire for information about
    your baby's health against the risks and your feelings about the test.
    
    I would recommend asking for the AFP test first.  Some doctor's may
    say it is unnecessary since your age alone increases your risk factor.
    AFP results can indicate a higher risk than the normal age ratios,
    which gives you more information to base your decision on.  You can
    also request a more intensive ultrasound procedure (Level II ?) that
    can pick up indications of Down's Syndrome or Spina Bifida.  This again
    will give you more information to make your decision.  If either of
    these pick up increased probabilities for problems, your doctors will
    probably more strongly recommend amnio, so you should be prepared
    for that.
    
    I wish you luck, whatever your decision.  I know it is stressful trying
    to make these decisions.  Whichever one you make IS the right one for
    you.
    
    Sharon  

As mentioned so many times about these tests ... having the test really
depends on whether you feel you need the info, or what you are prepared to
do with the info when you have it.  And that is a personal choice between
you and your spouse.  The medical profession treats having the amnio as
routine for older mothersbut there is little need for it if you are happily
prepared to accept whatever comes!

Stuart

I did opt for the amnio - a decision I felt comfortable with for a variety of
reasons:    1.  The HMO I am with "makes it available" if your delivery
		date is after you are 35.
	    2.  There was no pressure by the mid-wife who did provide me
		with answers to my questions.
	    3.  The hospital that did the procedure did about ~900 a year
	 	and had an above average success ratio.  They also held a 
		2 hour "class" you were required to attend.  It discussed the
		test, what it would screen for, risks, etc..  

As for the procedure itself - I had white knuckles every time I thought
about it.  I HATE needles - refused to look at it when they did the
procedure.  I have to say after all my anticipation - it was no more
than getting a regular shot and was over very quick.  Part of the 
distraction was looking at the ultrasound while they did it.  You could
see the baby and needle.

My husband still says I jabbered all the way home on how it didn't
even hurt.  He said I was "giddy" with relief from it being over.

Good Luck with your decision.

    
    I probably would have passed out or barfed if I saw the needle
    on the ultrasound!
    
    Lynne

    
    Actually, seeing the needle on the ultrasound isn't as bad as it
    sounds.  It shows up as a long thin shadow.  The most remarkable thing
    about it to me, was that it could be in my belly, and that I couldn't
    feel it "inside".  
    
    I dislike needles, and have had 6 amnios.  I definitely suggest not
    looking at the needle, and bringing someone's hand to squeeze - more
    from the apprehension, that anything else.  A couple of them hurt, a
    couple didn't.  It depends on a lot of things.  Since I had 1 of them
    done because of an AFP, and the other 5 to determine if the baby was
    ready to deliver, it wasn't a real option.  If there was information
    to be gained that was necessary to make a decision about the future, I
    would not hesitate to have it done again.
    
    

    .30 >>The medical profession treats having the amnio as routine for 
    .30 >>older mothers but there is little need for it if you are happily
    .30 >>prepared to accept whatever comes!
    
    Stuart,
    
    I have to disagree a bit with you on this point.  I do agree that
    having or not having these tests is a personal choice, and you should
    not feel pressured by anyone (doctor's included) into having them.
    I disagree when you say that there is little need if you are happily
    prepared to accept whatever comes.
    
    My husband and I were both prepared to accept whatever came, and my
    results indicated Down's.  Since we learned the diagnosis on January
    26th I have been lucky to have been in contact with a great support
    network of doctor's, genetic counselor's and other parents.  We have
    both been able to examine and pre-process some of the emotional
    side of facing what our life will be like with a child with special
    needs.  It has been beneficial to our family and friends as well.
    They are preparing themselves as well.  In a selfish way, we are
    also trying to savor these last few months to do a few things for
    ourselves as well, knowing that the road ahead may have a bit more
    stress.  So I think the mere fact that you feel prepared to accept
    whatever comes should not solely determine your decision.  I'm
    extremely thankful for this extra time to prepare.  
    
    Sharon

>    I disagree when you say that there is little need if you are happily
>    prepared to accept whatever comes.

Sharon, please read the words I used before disagreeing ... I said "if you
are happily prepared ....." 

Now, If I felt I needed preparation time, then I was NOT happily prepared ...

In those circumstances there is little need.

IF however you are not comfortable with the idea of facing the trauma of
problems like this at birth, and you feel you need time to prepare, then 
there is justification for this procedure.

2 of our 3 pregnancies were considered strong candidates for amnio ... but
based on genetic screening, we opted against.  And for both the doctors
pushed strongly for an amno ... we felt the risk outweighed any benefit
as far as we were concerned.  It IS a personal decision, but don't simply
let Drs push you into it if you are reluctant.

Remember that there is more to this than just the amnio on which to base
a decision ... genetic history ... a less reliable, but non-invasive
test and so on.  

Stuart

    
    There is also a relatively new procedure that has been touted as an
    potential replcement - in many cases - for the amnio.
    
    I believe it's called a triple bioscreen. It's a blood sample - and
    surely you're used to those by now! :-)  and what they do is measure
    the relative levels of many things against each other. ie, it's not bad
    if measurement #1 is at the 90th percentile by itslef, but if it's at
    90% and 2-3 OTHER measurements are also high (or low), then certain
    outcomes can be deduced.  It's accompanied by a very high resolution
    ultrasound in which they measure - among other things - the length os
    the middle joint in the fetus' baby finger, the length of the femur,
    the relationship of renal cavity to other internal organs that can be
    seen through US.  from all this data, they can tell you your chance of 
    incurring genetic problems.
    
    If you can't find any info locally, pls respond to me by mail; I'll can
    my OB up and find out where it's at.  
    
    My explanation may be a little inaccurate - as I was concerned about
    other things at the time.  The results I am sure of. This was given to
    me as I was 34 when I concieved, and 35 when I delivered... about 20
    months ago.
    
    Jamd      
     

    
    re -1
    
    See my note 82.20 - this sounds like the Bart's test developed in
    Britain. 
    
    Worked fine for us :-)
    
              seals
    

    Actually, I'm not sure what the test is, but I know one of the doctors
    in the Boston area who had done extensive research on it and was 
    interviewed on one of the local news programs.  If you're in the
    Boston area, and want more info on that new test (like what it's
    called, who performs it etcs.), you might try calling Dr. Bianchi
    (I think her first name was Diana) through either Brigham and Women's
    or the Joint Program in Neonatology.  She was Brad's first doctor
    after he was delivered, and we credit her the most with saving him.
    Her specialty is research.
    
    Cathy