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Prenatal Testing > Amniocentesis
I am 29 years old and currently 19 weeks and 4 days pregnant.My
AFP showed probability of 1/160 which puts me at higher risk for
Downsyndrome then other women of my age (ratio for my age is
1/800).I got level 2 ultrasound done and everything looks normal
in that.I now have to decide whether to go for Amniocentesis or
not.Please advice based on your experience.Also if anybody know
how is Obstetrix,Sanjose to get the test done.
I'm a 36 year old who, in consultation with my husband, chose to have an
amniocentesis at SF Perinatal. Please know that data was released in December of
2006 to update risks of miscarriage during amnios - the rates are not 1/200, they
are 1/1600. This was very reassuring for me because the 1/200 data was over 10
We had an excellent experience with SF Perinatal and I would highly recommend
their services. After talking with a genetic counselor, we were given a 20 minute
detailed ultrasound (which was fascinating), and the doctor performed the amnio in
less than 2 minutes. It's much less stressful than ''the thought'' of the amnio
definitely felt pressure when he inserted the needle (very thin needle and not as
long as you imagine). It felt like a needle inserted into layers of fat, not
odd feeling, but not painful. To calm my nerves, I practiced deep breathing and
watched my husband's face during the procedure. After it was over, all I could
was, ''this was easier than my first trimester blood draw!''. We did have the
Friday so we could spend the weekend relaxing and focusing on positive results. I
would absolutely have an amnio with future pregnancies.
My best wishes to you, no matter your decision.
my feeling is that i wanted 100% of the available genetic information so i knew i
wanted to do amnio (i'm also over 35 so they recommended it anyhow). if i were
would come down to the choices you'd make if the amnio revealed problems you
weren't expecting. it wasn't pleasant but it was fast and with a miscarriage rate
of 1% wasn't too worried about that.
Please know that the test you had done is notorious for false
positives. If the ultra-sound was fine, I would not go for the
amniocentesis, personally. I'm 29, too, and I just had a baby 6
months ago. If I were 34 then I might consider it. But not at
I've know a woman who got a horrible infection, most likely for
the amniocentesis, resulting in the loss of her baby. While this
is anecdotal evidence, it still makes me sad--and the risk of
miscarriage is still like 1 in 200 after the procedure is
preformed (which is 'only slightly higher' than the 'normal rate.'
I guess the real question is, even if your baby has downsyndrome
(which is probably unlikely based on the ultrasound) would you do
anything differently in pregnancy?
hope this helps
AFP tests are crap! I had a very long genetic counseling
appointment when I was pregnant, and when I nailed the counselor
down on the statistics of it, with it's 30 percent probabilties
of false negatives or false positives...it's...well, crap.
nevertheless..if it's down syndrome you're worried about there is
a type of sonogram called a nuchal translucency..it's very
accurate. I couldn't have a needle draging my blood into the
amniotic fluid because I carry hepatitis C, and they could not
assure me this might not infect my son. After MUCH wrangling they
finally told me about the translucency. Downs syndrome was all I
was worried about. My AFP results put me at 1 in 16...the NT took
me to 1 in 800 or so. I took those odds, no problem. They look at
the size of a fold of fat on the back of the fetus's neck at a
certain number of weeks...like I said, it's apparently very
accurate and not as scary as the needle. hope this helps. Tresca
I can only speak from experience, but I too, was out of the range of normal for my
(38 at the time) and was advised to get the amnio. However, I'd had a miscarriage
about 6 months before (nothing to do w/ an amnio) and was so worried about this
so, after the level 2 ultra sound showed everything was okay, I tried to tune in
baby and felt, on a gut level, that she was fine and she certainly is (she's a
now, very happy and healthy). that's just how it turned out for me- it was so
the time and i know most amnios go really well... good luck!
Don't bother with the Amnio. Take a look at the previous posts about this issue.
all likelihood, you are probably having a girl, which is what has your AFP markers
showing an increased risk. This always happens, because one of the markers is an
increase in blood levels of one of the kinds of estrogens, which would be
if you're having a girl. Remember, 1/160 is LESS THAN ONE PERCENT CHANCE of
having a child with DS, which means you are more than 99% likely to have a
perfectly chromosomally normal child. Those test are created to throw a REALLY
WIDE NET, so they tend to get people all worried over nothing. My AFP came back
showing 1/120, a higher risk than yours (and still only about 0.85% risk of Downs)
skipped the test, and my OB said he thought that was totally appropriate.
No amnio, thank you.
This past advice may be helpful also. Check out:
I feel for you, because I remember what a difficult time this was
for me, in my own pregnancy. This is a decision only you can
make, but I'll share my own experience in case it helps. My AFP
came back with a 1 in 97 chance of Downs syndrome, and I decided
to do an amnio. This decision was based largely on two things.
First, I was convinced that I would not want to raise a Downs
syndrome child if I could avoid it. Second, having a rather
anxious personality type, I knew that I wouldn't enjoy a moment
of the pregnancy as long as I was in suspense about the
possibility of Downs syndrome. When I was considering the
alternatives I read, as perhaps you have, that amnios carry a 1
in 200 risk of causing a miscarriage. But I think that number is
actually outdated, and the current odds are much, much better --
somewhere closer to 1 in 1,000. I do think it's important to find
someone who has done a lot of amnios before, and if possible to
find out how many of those amnios had bad outcomes. I was very
reassured when my doctor told me he had done thousands and had
never had a miscarriage result. And indeed, everything went fine.
I was kind of nervous that it would hurt, but it wasn't bad at
all -- kind of like getting a shot, just a little longer. The
worst part was waiting for the results (which were good).
Good luck to you, and try to remember that a 1 in 160 chance of
Downs syndrome means that of 160 women in your situation, 159 of
them are going to get good news. You're probably one of them!
Try not to worry
I had my last US at Obstetrix, SJ. I had indicators for
Trisomy 18. the doctor at obstetrix was very patient,
thurough, knowledgeable, and appropriately compassionate when
discussing what the indicators meant. I chose not to get a
amnio as by the time the results would be back, I couldn't
imagine terminating the pregnancy. So I can't speak of their
amnio skills, but I did have a positive experience while
getting traumatic news.
done with babies
Hello. This same thing happened to me when I was pregnant and I
was younger than you are. Have you had a nuchal translucency
test? I ask, because that should be a more accurate assessment.
My risk through the AFP was rated as much higher than yours for
having a baby with Down's, so we decided to have the
amniocentesis, which we had at UCSF. I was glad we did, as it
was very reassuring and I was very stressed. It went smoothly
after some hitches, which the staff at UCSF handled very well. I
am not sure if I will do it again if this risk factor pops up
for us again, because I since learned that the AFP has a very
high rate of false positives, especially for female fetuses. I
can't tell you what to do, but I do know that having an amnio
was the right choice for us.
loving my healthy little girl
I am 40 years old and elected not to do any screening tests when
I got pregnant in January, but instead to go right to diagnostic,
which for me meant amnio. I didn't want the worry of false
positives. I was concerned about amnio risks, but I'm on Kaiser
in SF and they have a mandated class about all genetic testing
and answer all your questions before you choose anything. My
ob/gyn is one of the doctors who performs amnios and has also had
two herself at that facility, so overall I felt I got a lot of
information. The risks seemed extremely low at that center. The
amnio itself was uneventful and actually no big deal--they didn't
even put a band-aid on the tiny mark the needle left. The pain
was about comparable to having blood drawn from your arm. The
medical team that performed the amnio was very, very gentle and
kind and professional. I was really impressed with the quality of
care and how easy it was. We got our results in 10 business days
and everything was fine. Of course, your experience may vary, but
this was mine. Getting concrete results was worth it.
More children with Down syndrome are born to women under the age
of 35 because most younger women don't do an amnio. If you are
pretty sure you would not have the child because of Down
syndrome, I would have the amnio. It definately happens to
younger women, just less frequently. I have terminated a
pregnancy for Down syndrome after doing quite a bit of resarch
and speaking to parents with adult children with Down syndrome.
If you do the amnio, get FISH results - you get these in 48
You will get lots of feedback on this. I am sure you know that
the MSAFP test has a 90% false positive rate. I know a woman
who tested positive three times and has three healthy girls!
It's such an insurance scam to force more testing, charges, the
insurance companies, the doctor offices, the labs, ect. they
are all making their money and collecting their data and
placing fear in expected parents minds.
Of course, I knew the possibilities and tested a high
likelihood on the MSAFP test and went to the ''state required''
genetic counseling meeting with the intent to decline the
amnio, but they really scare you and after the sonogram, the
tech left the room and the dr came in telling us that we were
further along than originally thought which raised our chances
of downs even higher. Then they gave us, literally, two minutes
to decide. We decided to go for it, to know and be prepared-- I
didn't want to wonder the outcome for 20+ weeks. I have to say,
the amnio freaked me out. It was my first pregnancy and they
send you home with a list of things to watch for, one of which
is fluid leaking.... well, as you are aware, you get
quite ''juicy'' in pregnancy and it progresses as your pregnancy
does, I had know idea what was normal and had a worrisome
weekend. In short, all turned out fine and my son is healthy
and happy and smart, but we did find out that there is a
balanced translocation in my family and with women who carry a
balanced translocation, it gives a greater chance of
miscarriage, as well as the possibility of the the
translocation on the genes to be unbalanced which can create
developmental and physical problems.
In short, you are young and if you are healthy and have no
family history of issues, I might just let it go and chalk it
up to a false positive. If you are the type of person that will
frett over this throughout the remainder of your pregnancy, do
yourself a favor and ease your worried mind-- find a good
doctor and do the amnio and get the results and go from there.
Ultimately, it's your decision, and you have to do what feels
right for you.
I am a certified nurse midwife (and a mom) and I have to help
patients with this decision quite a bit. First, the AFP isn't a
great test. false positives and false negatives happen quite a
bit. I feel like the most important questions to ask yourself
is, ''If I had a baby with a genetic problem like downs syndrome
would I terminate the pregnancy?''. If the answer is yes then get
the amnio. If the answer is for sure no then don't get the
amnio. The risk of a spontaneous abortion from an amniocentesis
is about 1% but I feel like it's well worth the risk if you do
not want to have a baby with downs syndrome or another genetic
I'm sure the folks who did the sono said that a sonogram can
pick up soft signs of downs but can easily miss a baby with
I had a baby at 36 years old and knew I would terminate the
pregnancy for any genetic problems. I had an amnio, it barely
hurt, my baby was fine, and I had a healthy baby boy.
Good luck with your decision.
If I was in your shoes I'd get the amnio.
Congratulations on your pregnancy. My advice to you is to have
the amnio done. It will give you peace of mind. You don't want
to go through your pregnancy with the thought of your child
(probably) having Down's Syndrome.
I had an amnio at 39 years old simply because the risks are
higher for a child to be born with Down's Syndrome. Not sure
where your doctor is located, but I had mine done at Kaiser
Oakland. The doctor was so good, he was done in 5 minutes. It
was a very quick procedure. Nothing goes through the navel, but
he went very close to it and most importantly, he made sure my
baby was out of the way. When he was done, I said, ''Is that
it?'' I was expecting more drama. I was on pins and needles
waiting for the results and when they came back negative, the
weight of the world was lifted off my shoulders. The sex of my
child was predicted with 100% accuracy. My amnio happened in
1999 and my daughter was born in 2000. I am very glad I had the
With my first child, my tests came back with a push to get an
amnio and so of course I did, but I wish I hadn't. I was so
stressed before, during and after, and it was quite painful (they
had to poke me several times) and the waiting was awful. And it
was negative, of course. I never got one again. You have to be
really clear about what you would do if you received a positive
result. You are not old enough to really worry (I didn't even
get one with my last child at 38). Enjoy your pregnancy.
After scouring the boards, I'm not finding updated info on amnios, and really need some
recommendations. Considering recent news about a lowered risk of miscarriage in amniocentesis
(1/1600 vs. old data of 1/200), I'm curious to hear from women who used the following centers
for the procedure (I'm not interested in CVS): East Bay Perinatal; California Pacific Medical
Center; San Francisco Perinatal; UCSF Prenatal. Please tell me about your doctor, his/her
bedside manner, overcoming fears of the procedure, and why you would or would not have the
test performed again.
San Francisco Perinatal is considered out-of-network for my insurance plan, so unless they are
rated above and beyond the others, I would prefer to stay in-
network. I'm 36, adopted, and we've had one first trimester miscarriage, so prenatal testing
would ease our concerns. We're in our 8th week of pregnancy, and need to schedule this
procedure as soon as possible.
I had an amniocentecis in early January at
East Bay Perinatal
in Oakland. I don't
remember the docotor's name, however, she was Asian and was very nice and comforting
during the procedure. She explained the procedure and what it would feel like for me
(like drawing blood). Since it was my first anminocentesis, they provided genetic
counseling before the procedure where they ask you about your family's health history
and walk you through a few chromosome charts. It really made me understand the
importance of knowing yours and your partner's health history. Try to schedule your
appointment first thing in the morning to minimize your wait times as schedules back
up. Pregnant with second child
I had my amnio done at East Bay Perinatal
by Dr. Marinoff, I think? He was great. I
did not have any screening done beforehand; I knew that at age 37, I wanted the amnio
no matter what. It really depends on what you believe the risks are and how you feel
about having an unexpected outcome of your pregnancy. It's such a personal decision.
I asked my OB: ''What would you tell you daughter to do?'' He said he'd tell her to
get the amnio no matter how old she was. I was, however, very apprehensive about the
procedure, the pain, the needle, that I might do something afterward to cause a
miscarriage, etc. It turned out to be nothing. The pain, for me, was less than the
pain I feel when getting my blood drawn. The sensation of the amnio was definitely
strange and disconcerting. I did not ever look at the needle. I felt a little weird
afterward for a few hours. All in all, my main feeling was, ''Gosh, I wish I hadn't
wasted all that time worrying.'' If I ever got pregnant again, I would not hesitate
to get an amnio. The only thing I might consider would be CVS, in order to get the
results earlier. That way, if the news were really bad and I chose to terminate the
pregnancy, I wouldn't be so far along. Good luck with your decision!
Happy to have the amnio
I reccomend either amnio or CVS if you might terminate a pregnancy if a problem is
found. I say ''if'' because some people are not sure if they would terminate. We
ended two pregnancies for T21 - Down syndrome - when I was 37 (no family history). If
you do not want to raise a child with this issue, or some of the other more common
trisomies (T18, Y13), have the amnio.
California Pacific Medical Center
would be my choice for docs/experience.
I've visited three clinics in the Bay Area for prenatal testing, and researched a few
others, and ended up going to the Peninsula to have my Amnio done by Dr. Liner at
Peninsula Prenatal Diagnostics. See
attached http://www.obgynscan.com/about.htm I had to pay a higher PPO rate to go
there instead of East Bay Perinatal, but I'm really glad I did it. They have a very
low rate of complications, and I felt they were extremely careful and knowledgable.
It was also the only place my husband and I felt the geneticists really knew their
stuff, since we had some fairly complicated genetics questions. By comparison, at
UCSF, where we did nuchal translucency and considered doing CVS, the geneticist
seemed to know less than we did and couldn't give us accurate information on the
complication rate for procedures. I've done ultrasounds at East Bay Perinatal and
been less than impressed. Dr. Liner was great and the bedside manner at the whole
clinic was fabulous. They also offer the option of getting FISH analysis done so you
get the results in 2 days, which we elected to do. It all turned out fine and it was
worth the extra money to feel like we were being taken care of. an anxious mom
I had an amnio at East Bay Perinatal
in April 2005 (I think it was Dr. Weiss, but not
sure) and found the people I worked with (doctor, technicians and genetic counselor)
to be warm, caring and competent. Their manner and answers went a long way towards
relieving my anxiety about the procedure, but, honestly, the best thing was hearing
other people's stories of success. When I heard I had to have an amnio and freaked
out a little bit, I started talking to my girlfriends and almost every one of them
had a story about an uneventful amnio and subsequent healthy baby, and those that
didn't referred me to their friends who did. It was so reassuring and wonderful to
see how much people cared. One other thing that helped calm me was doing some
visualization of the procedure going well, my body healing, and the baby being
delivered healthy -- it sounds a little silly, but if nothing else it made me feel
like I was doing something to go through that mental exercise every day, since there
really isn't anything physical you can do to affect the procedure, and I'm the kind
of person who likes to feel like I'm doing something. I would do an amnio again
without hesitation, because of the peace of mind -- if I hadn't had the amnio, I
would have been worrying right up to delivery that maybe the baby had Downs, and it
really would have hampered my ability to enjoy the pregnancy and be excited about the
baby coming. Best of luck to you.
Healthy baby, no complications
i am 12 weeks pregnant and plan to have an amnio at 16 weeks. as best as i can tell, bay
area perinatal and cpmc have the most volume and the lowest miscarriage rates. are there
any doctors i should stay away from at either place? can anyone recommend another
office/hospital for prenatal testing? any advice as soon as possible would be greatly
Dr Paula Melone is supposed to have an excellent record for safe
I am looking for advice about having an amnio (and I need help
quickly!). I am 37 (36 at conception) and got pregnant the
first month we tried. My husband is 44. We got back our AFP
results and they were 1:10,000 for Down's and 1:10,000 Trisome
18 and 1:6,600 for neural tube defect. Are these the kind of
results that make women decide to skip an amnio? Or do people
go forward to absolutely sure. Also, I know many women who have
had amnio and no one who has lost a pregnancy with it. I am
very concerned about having a special needs child but have no
family history of it. I am also very concerned about possibly
losing a perfectly health pregnancy. My NT was ''perfect''
according to the tech.
Those risks seem pretty low to me. We had similar odds (I was also 37 at the time of
conception/birth) and opted to do the nuchal translucency instead. Find out what the risks
of complications from the amnio are and compare those to the risks of downs, etc. and see
where your comfort level is. I have friends who do an amnio no matter what the odds, and
others who won't do it no matter what. It's about living within your own comfort zone on
these kinds of parenting decisions--and that takes a little thought and research.
The decision to have an amnio was one of the hardest decisions I've ever made, so I
sympathize. I really had no reason to have one except for my age (just over 35 at the time).
I'm glad I did it. It was totally painless. I even did it for my second pregnancy. Both came
out just fine. The reason I chose to do it was just ''to know''. I don't know what actions I
would have taken had the amnio been 'positive' for anything. I was going to cross that
bridge if I got to it. If I were in your shoes I would go ahead with it. Just make sure you
rest for the following two days (no lifting, etc...really take it easy), because from what I
understand, loss of pregnancy after an amnio is usually caused, not by the amnio itself, but
by the mother overdoing it afterwards (don't quote me on that though). Good luck with your
I think if you're at all concerned about giving birth to a baby with any disability, it's
best to know so that you can prepare yourself for the future. Check the miscarriage rate
after amnio with your doctor's office - I'll bet it's very low with the number of older
women giving birth in the Bay Area. I've had two amnio's that cleared any fears and eased
my mind so much that I enjoyed the rest of each pregnancy so much more with the knowledge
that the amnios gave me..
-Best of luck to you.
If having news of a genetic defect would change the course of your pregnancy, then you
should have an amnio. And, by the way, I know of know one who has miscarried from amnio or
Best of luck to you
IMHO you are looking at the statistics with too flippant a tone. My sister and her
husband, both under 30, did not have an amnio and did not expect that their baby would be
born with DS and would have to spend most of the first year of his life in the hospital. If
you have spent significant time around a DS child, pref adolescent or adult when they are
still about 4 years old intellectually but with the size and frustrations of a teenager, and
still would love and live with your child with DS, then by all means go ahead. If not,
please heed advice from someone whose nephew will never even learn to speak.
I wouldn't do the amnio if it were me. With odds that you stated, the baby is probably
fine. I did an amnio with one of my pregnancies strictly due to my age (I was 38 at the
I delivered a still birth days after the procedure. I think the miscarriage rate post amnio
is far higher than reported Been There Before
I was in your shoes (pregnant at 36, due at 37) and did not want an amnio because of the
(however slight) risk of miscarriage.
I'd had two miscarriages and did not want to go through it again. I had a perfectly healthy
child 3 years before, have no family history of any kind of birth defects or conditions, and
did not see how just getting a bit older would suddenly put me at sufficient risk for a
problem. My husband too is older, but from what I understand the only birth condition linked
to dad's age is dwarfism, and the risk is not significant. So, I had the nuchal translucency
ultrasound, instead, which is the standard of care in Europe, but seems somewhat uncommon
here. Everyone at Kaiser encouraged me to have the amnio, seemed to expect that I'd have
it-even though I had no other risk factors. Long story short, the NT was normal, and my baby
was fine. I think your odds of a problem are smaller than your odds of a miscarriage with an
amnio. Good luck-chances are excellent that your baby is fine.
I had good NT results like you did and upon consulting with my doctor, did not have the
amnio done. I was 36 at the time. I am happy with my decision. Good luck!
No one but you can make the decision about whether to have an Amnio... but the odds you
quoted were of the order of 1 in 10,000 and 1 in 6600? With that and a perfect NT, what
additional reassurance do you need?
When I was making the same decision (with much worse odds) I tried applying the odds to
OTHER decisions... would you cross a street with those odds? Would you eat raw fish?
Undercooked hamburger? Buy a lottery ticket? Return a sweepstakes entry? The threshold for
me really was when the chance of miscarriage was less than the chance of any anomaly --- I
think the range was around 1:64 to 1:200 with my last child (I was 44). I had a CVS and
For the record, my youngest is ''perfect'' like his siblings, but he's really pretty
I am 38 and expecting my second child in the fall. I just had a
nuchal translucency test that showed a 1:900 risk for Down
Syndrome. Two years ago when I was pregnant with my first child
I had the same test and the ratio was 1:1800. My husband and I
opted not to get amnio at that time because we were very
comfortable with the results. The risk of miscarriage from
amnio at the place I would go to is 1:300. Although the risk of
miscarriage is 3 times higher than my personal risk of having a
baby with Down Syndrome, I feel like there is pressure from the
medical community (because of my age) to get amnio anyhow. I
would prefer not to, although I also know we would probably
terminate if we knew our baby would have Down Syndrome. I am
not the type to be anxious about it during my whole pregnancy,
but I would like to have a better understanding of the true
risk. Is there anyone who has had a similar experience with
this decision making process who can offer advice? Has anyone
had a decent nuchal result but then ended up having a baby with
Down Syndrome anyhow?
I am 40 years old and I just had my first baby 5 months ago. I, too, had
a nuceal translucency scan (my results came back 1 in 225), and
experienced pressure from some sources to do the amnio.
One practitioner even said something along the lines of ''you'll NEED to
get the amnio because of your age.'' I knew it was my choice, however,
and I knew I didn't want to risk it. My OB backed me up 100%. You need
to do what's right for you, but if my results came back 1 in 900 there
is NO WAY I would do an amnio. Just my humble opinion.
I had my first child at age 36 (only a couple of years younger than you
are now), was reasonably satisfied with my odds after the nucal
translucency test, & blew off the amnio because (as you pointed out) a
1:300 potential miscarriage ratio seemed awfully high. Also, I had heard
my daughter's heartbeat, had seen her sonogram (during which she lay on
her back, waved her tiny little vestigial fingers and toes like the baby
she would soon become and even appeared to be smiling as she gently
bounced up and down on my full bladder) & hence was already so in love
with her that I wanted her regardless of any potential defects. She
turned out to be perfectly normal (whatever ''normal'' means). Go with
your gut -- lots of moms are having kids later these days. Since we're
probably the healthiest generation in terms of the prenatal care,
nutrition, & pediatric care we received in addition to a fairly high
level of health consciousness throughout our lives (at least in places
like the Bay Area), who really knows when our eggs will be too old? Our
doctors rightfully want to err on the side of caution, but when push
comes to shove, I think mom knows best & that if the prospect of
amniocentesis gives you the heebie-jeebies, you shouldn't do it.
Personally, a 1:900 chance of Down's syndrome seems way more remote to
me than a 1:300 chance of miscarriage, even if the odds aren't as
favorable than when you had your first child. Congratulations on your
pregnancy & good luck.
Another ''mature'' mom
The real question is this: what will you do with the knowledge you gain
from the amnio? It's a very personal decision you have to make. I had my
first child at 37 and twins at 39. I also was also feeling pressured and
confused until I realized that regardless of the results, I would not
terminate my pregnancy. If the same is true for you, then its not really
worth the risk.
-Lucky mom of 3 healthy kids
It might be best for you to have a consultation with a geneticist now,
while you are deciding. Also, keep in mind that Down's Syndrome is only
one of the chromosomal amnormalities that a fetus can get. The others
can't be seen on ultrasound, so you might want to know the odds for them
First let me say as a mother of a beautiful and thriving daughter with
Ds, that Down Syndrome has a PR problem :-) People think that it's one
of the worst things in the world but it truly isn't. That's enough
about that but i had to say it.
That being said, I would say a large percentage of mom's i know with
kids with Ds are under 35 and passed all the SCREENINGS (nucheal fold is
a screening) with flying colors. Amnio and CVS are the only certain
tests. Though one mom in my group had a false negative CVS. Anyway good
luck with your decision. If you or anyone wants to know more about Ds
(many Doctor's give outdated info etc.), feel free to email me.
I had to respond to this. I was 39 when I had my son and during that
pregnancy I had the NT test with the double marker screen. My results
were 1:300 which were much lower than yours. We decided not to have
amnio because the results were still better than what they said was the
miscarriate rate for amnio.
I'm now 41 and pregnant with my second. This time, my doctor felt that
my age would skew the NT results even more (sounded weird to me but I
weighed the options). Because my results weren't that great the first
time, I went straight for amnio. My results were fine. Baby is a girl.
Due in July. And, had no problems whatsoever with the amnio.
With your results, even 1:800, I'd say, you're probably fine skipping
that's probably what I would have done in your shoes.
that said, the peace of mind after the amnio was nice. And, having amnio
was really no big deal. Upon further research, it seems the rate of
miscarriage with amnio is somehwat deceiving. Some say that the rate of
miscarriae in the control groups is roughly the same so I'm not
convinced that amnio in itself causes miscarriage. But, that's easier
for me to say now that I had good results and no complications from the
I think the odds are probably with you and while the NT test is not
diagnostic, I would think with those odds you are ok. I hear there are
more false positives than negatives.
Hi there. I am 39 and expecting my 2nd child and am scheduled for my
amnio in May. I know that there are a host of different statistics out
there, but I have done my own research (I have an M.S. and work in
healthcare) and this is what I found. At age 35, the risk of miscarriage
is lower than the risk of having a baby born with Down Syndrome or other
This is where you really need to do some soul searching and talk with
your husband and maybe even see a genetic counseler (a health
professional usually with a Master's or better trained to help you with
this very question.) At age 39, you have a 1 in about 200 chance of
having a baby born with Down Syndrome, but a
1 in about 140 chance of giving birth to a baby with any kind of
chromosome disorder. The risk of miscarriage is much, much lower than
this, especially if it is performed by someone who does amnios all the
time and is very experienced. I had an amnio last time and have a
healthy son, and it really was not a big deal, not really that painful,
nothing much to see where the needle had went in. But you have to decide
what is right for you. For me, my cousin has Down Syndrome, is 19 years
old and still wears diaper pads. I also have another cousin with spina
Bifida who is physically disabled. Although my family loves those
cousins dearly, I have seen first hand how difficult it is to raise a
child with disabilities. The one cousin burned the house down
accidentally, the other needs lots of outside assistance for daily
activities. While the friends of my aunt are now retired and taking
vacations, my aunt is still changing diapers and watching her son 24/7
because he is not safe alone. Her marriage was torn apart by this, and
her health is not good. I am always fighting for the rights of disabled
people, because of my cousins, but I would not knowingly bring a
disabled child into the world. For me, I had no question about the
amnio, because I am so certain that we would terminate the pregnancy if
there were genetic abnormalities. Good luck with your decision, it is
not an easy one.
need to know
I gave birth last year at age 37. My screenings showed a much higher
risk of Downs than yours (though still considered a ''slight'' risk) of
1 in 120. That equals to a less than ONE PERCENT chance of my baby
having Downs Syndrome. We opted not to have the amnio, and I recommend
that you forego it too, if you're not feeling inclined. Especially since
your risk of miscarriage is even higher. Ignore the pressure from the
medical community. Their model is to go ahead and test just to rule out
every tiniest possibility, it's totally unneccessary. In fact, my OB
fully supported my choice NOT to have an amnio, as he felt it was
unneccessary, too (like you, my nucal fold test came back just fine--
also, my 20 week US showed no soft-markers for Downs or anything else).
I don't think you need an amnio-- think about it, if 1 in 120 is only
0.85 percent risk of Downs, how tiny a percentage is 1 in 900? REALLY
SMALL!!! Your baby is fine, it's not worth the risk.
No Amnio For Me, Please!
We went through a similar situation recently.
We found the following report, available for $5.05 on the Inernet, to be
helpful in thinking about our options:
The Amniocentesis Report
A Decision Guide for Expectant Parents and Health Care Professionals
Authors: Dr. Asaf Ferber, M.D. (OB&GYN)
Dr. Nachum Sicherman, Ph.D: Professor of economics
My risk for Down syndrome with my first pregnancy was around 1 in 300 -
amnio confirmed Down syndrome & we terminated the pregnancy - I was 37.
This happened again, when I was nearly 38. What you need to ask
yourself is what the outcome would be if the amnio confirmed down
syndrome. Unfortunately, some women are the ''one'' in the equation.
I was confronted with almost exactly the same situation last year, and
opted to avoid the amnio. I was really on the fence and agitating over
the decision for a long time, and kept coming back to the relative
arbitrariness of the use of the age 35 as the ''magic number'' for
advising amnios. (I had my first child at 33). I finally asked my
genetic counselor, ''Given all of my test results, if I were 34 instead
of 37, would anyone even be mentioning amios to me?'' Her answer was no.
That, and my aversion to letting somebody stick a needle into the safe
space where my baby was growing were enough for me to feel like I was
willing to take the risk of not having every scrap of info that might be
available to me about my baby, who turned out to be just fine. So, I
guess my adice is to gather as much information as is available short of
invasive testing, follow your gut instincts, and then relax and enjoy
your pregnancy. Best of luck to you!
I would not have an amnio. I had a miscarriage with my first pregnancy &
I was 36 years old. Then I got pregnant again and my doctor told me that
an amnio can cause another miscarriage. So I decided not to have amnio &
instead my I did the blood test. I forgot what it's called, but there's
a blood test to take for down syndrome. My test came back fine. But
shortly after that I was scheduled my first ultrasound. With new
technology, with the ultrasound the doctor that reviews it can tell if
your baby will have down or not. They measure everything and you can
actually see your baby's features and spinal cord. So if you are not
sure, wait for the ultrasound, it will make you feel at ease.
First, congrats on your pregnancy. A 1 in 900 chance for the baby
having trisomy 21 (Down Syndrome) is EXCELLENT for a 38 year old mother.
The average statistical risk of Down Syndrome for somebody your age is
over seven times greater than your personal risk. That's really good
But yes, it is possible for a person to screen normal on the NT scan and
still have a baby with a chromosome error. Not common, but possible. So
whether the amnio is right for you comes down to how catastrophic you
feel a trisomy baby would be for your family. If you decide you do not
want a trisomy child under ANY circumstances, then the only way to
truly ensure that is to do an amnio (or CVS) and to terminate if you get
poor results. But if you come to decide your fear of hurting a normal
baby from the amnio is greatest, then skip the amnio and be confident
that the odds are still in your favor.
I know what you mean about doctors pushing you toward amnios if you are
over 35. It can feel annoying, especially if your NT results are good.
But, speaking as a woman who had a completely normal pregnancy and baby
followed by a chromasomally abnormal pregnancy, I can say that the
rammifications of having a trisomy baby (mine was trisomy 18) are
incredibly large for the child, the parents, and any other kids in the
That doesn't mean you should ultimately do an amnio. But I would
encourage anyone who is pregnant in their thirties to make sure they
give this a lot of thought and are at peace with your decision
afterwards. At least then, regardless of your eventual outcome, you
won't be haunted.
E in Oakland
A couple of things you should know. The ratio they give you for
likelihood of down's syndrome is a calculated number and your age is one
figure used in the calculation. So if nothing else has changed except
your age, the ratio will still be less favorable with each subsequent
Amnios are risky and the statistics do not reflect all the risk, unless
things have changed in the last few years. I have a friend who got an
infection from her amnio - she felt fine before, was having an
umcomplicated pregnancy and never felt right afterward. She delivered a
VERY premature infant 6 days after the anmio. Her experience is not
reflected in official stats for amnio complications because the delivery
did not happen within 48 hours of the procedure. how much does this skew
the results? I don't know.
Some potential problems will be apparent with the mid-pregnancy
ultrasound and may inform whether an amnio is needed. have you gotten
its not an easy decision to make.
Lots of responses to this one again!
It's an important decision. Just wanted to add that a friend of a
neighbor had an amnio and she aborted the fetus because of the amnio. I
also wonder how many abortions due to amnio are not called such, to
protect the practitioner. I received lots of pressure for amnio too at
35! It seemed crazy to me to pressure so much at such young age.
My second pregnancy I had an amnio; I didn't mind the needle going in, I
minded the disturbance to my precious baby secondary to the stress of
Doctors these days often will do amazing amounts of tests, and NOTHING
can guarantee you have a normal baby.
Maybe the increase in autism and ADD we see now is a result of more
interventions during preganancy and labor (in Times Magazine in an
article about Down's, it read that mothers of Down's babies have had
Ptosin during labor four to five times more, percentage wise, then the
mothers whose babies didn't end up with autism).
Lastly, the amnio will not tell you how severe the Down's will be.
Whether it will be very mild or severe severe will not be told on this
test at all; I really asked about this one too when I was pregnant.
Also, you are not supposed to lift anything more then 10 lbs. for three
days after; it meant I couln't lift my 2 yr. old up to my lap.
My last pregnancy, I opted for no tests at all (including that sugar
test where you have to drink this disgustingly sweet stuff; I really
asked my midwife, and it seems if you are diabetic there will be other
signs too, normally). All the waits after every test just stressed me
out too much.
Anyhow, a personal decision. Weigh all the factors.
I'm 40 and my due date is 12/5/05. My amnio is scheduled for
6/20. Does anyone have any advice about how to remain calm during
and how to take care of myself after the procedure? The baby's
father unfortunately cannot come to the appt. with me (he lives
out of state) but other good friends will be there.
Also, I did intense physical therapy for a slipped lumbar disk
(spodylolisthesis, stage 2) all last fall, and am concerned about
back pain during my next two trimesters and labor/delivery. My
orthopedist believes I can have a normal delivery and won't need
a c-section. Does anyone have any experience with this? I'd love
to hear your story.
Thanks so much.
I had an amniocentesis at 39 (5 years ago) and was very anxious like you because I didn't know what to expect. Mine was performed at Kaiser Oakland and the doctor was very good; he was in and out of the room in 5 minutes. All I was concerned with was ''the needle.'' Not sure if you know this, but nothing goes through the navel, even though that's what a lot of people think. He went very close to it, I'd say a couple of inches below, but not through it. The lights in the room were dim and the sonogram was on to make sure the baby was out of the way.
The nurse scrubbed my abdomen with Betadine. When the doctor came in, he made a dot pen mark where he wanted to insert the needle. He made sure that I didn't see it before the procedure and held it behind his back. When he was doing the amnio, I turned my head and I tensed up because I was scared and nervous. He kept telling me to relax which was difficult.
(It's not everyday I have a needle inserted into my abdomen.) He did what he had to do and was gone very quickly. All I could say was, ''was that it?'' I was expecting more drama, but it wasn't a big deal. I'm glad I had the procedure done.
Afterwards, I went home to bed to rest and stayed off my feet the remainder of the day. I wasn't sore and was able to go to work the next day.
Good luck to you.
First off, congrats on your pregnancy. Can't offer much in the way of the amnio. I turned 40 during my pregnancy, but opted out of the amnio.
The procedure is pretty routine these days and risk of complications low.
Good that you are going with a friend. If you are considering having a Doula for your birth this may be a good time to break her in!
As for the spondylo, best recomendation is to keep your deep abdominal muscles strong (transverse abdominus) and Hamstrings flexible. I'm sure that is what they worked on in your rehab as well. As your body changes you will need to continue to strengthen & stretch to accomodate to the changes. Also, right after the birth you will need to work on the abdominal strengthening (isometrics initially) as you may be at risk for injury do to weakened abdominal muscles that have been
overstretched from the pregnancy. Don't discount bracing during your
pregnancy as there are a number of supportive braces designed to decrease strain to the low back during pregnancy. A good combination is to find a pre-natal Yoga class as well as pre-natal pilates instructor (preferably one that has experience in back rehab, many Physical Therapists have their pilates certification these days). Best of luck, if you have any questions feel free to contact me.
Kelli Manring, PT, MSPT
Doula, Pilates Instructor, and mother of a beautiful 8 mo. baby girl!
Ideas for not getting nervous:
1) Don't watch. Look away.(I got this advice from a friend)
2) Ask for a local anesthetic. They really work great.After the little sting, you feel nothing. No sweat!
3) I had the nurse massage my feet- which was really nice.
The docs work fast so, once they find out where the baby is, expect it to all be done in 5 minutes.
Please have the Amnio with as little worry as possible. I had one for this baby I'm carrying and am so glad I did. The anticipation was the worst of it. Its over in seconds and doesn't hurt. I've had pap smears that were more uncomfortable. Plus getting the news that our daughter has no genetic problems enabled us to enjoy the pregnancy so much more.
I've had 2 amnios, and both times, it just wasn't nearly as bad as I thought it would be. Definitely take a friend if your husband can't come (he'll miss the really great ultrsound that they do at the same time). What I found helped me the most to stay calm (because I HATE needles, like most people, I suppose) was the controlled breathing that I learned through the yoga classes I take. Probably any kind of controlled breathing would work (you could try something simple like counting your breath and making the inhale the same length as the exhale, then try making the exhale twice as long as the inhale... that kind of thing). Good luck!
I had amnio last year. I was very very scared but it ended up being no big deal and it was really OK. I was so nervous that I brought my husband and mother-in-law for support. Turns out the needle that they use is thinner than the one they use for drawing blood out of your arm. One thing that helped me was that I covered my eyes and didn't look at the needle once (it is very long). I felt a little pinch and asked the doctor to tell me when he started drawing fluid and he told me he already was!
I barely felt the needle and it was so manageable that I began to relax on the spot during the procedure. Afterwards, my husband told me that the baby was moving around like crazy and so the doctor kept having to move the needle, but I never felt any of this!
After the procedure, I had mild cramping. I just took tylenol and I had a couple of chick flicks waiting for me at home so I just laid on the couch and watched movies. Someone told me that a small glass of wine will help relax any cramping too.
OOps, I just realized that your amnio already happened two days ago! Ah well, perhaps this advice will help others. Hope it went OK!
a few months ago i had this procedure. i'm 37. It was NOT BAD AT ALL. I have had worse (more painful/uncomfortable) pelvic exams and even dentist appointments. It simply wasn't as horrific as it sounds, in my experience. this has also been the experience of nearly all my mommy friends. the build-up and anxiety is worse than the actual procedure. that said, however, i would recommend, if at all possible, having someone go with you and drive you home since your partner cannot be there.
Hi Stinsonsmon --
Here is my experience so far. I am in my 28th week of pregnancy, due in mid September. I just turned 40, and had amino. It was relatively painless. Remember, you are not required to have amnio, but there are some compelling reasons to do so, especially at ''advanced maternal age'' -- it can help to alleviate general pregnancy and ''my baby'' anxiety, and/or provide a foundation to deal with future planning. As for relaxing during the procedure-- keep breathing. The only painful part is the initial insertion of the needle... ask if they use topical lidacane to deal with that. I did not find it necessary. If you have a needle phobia, hold someone's hand and just DO NOT LOOK. They will probably use a sonogram to guide the needle once it is inside, so ask for a mirror to see the sonogram screen -- you will be able to see the fetus, a cool experience, take that very wild opportunity to be distracted from the amnio procedure itself.
About the back -- I have had chronic back problems arising form a cluster of injuries when I was in my 20s -- compressed and degenerated discs in the 4th and 5th lumbar region, cervical disk compression and bone spurs, and a history of very acute muscle tension in both the ''bra'' (thoracic) and ''Girdle''
(pelvic) regions, both front and back. I have not ever slipped a disc, however, tho that is a danger. I delayed pregnancy because I was very fearful about my structural soundness, but got knocked up with out pre-planning a body-mechanic strategy.
During my pregnancy I have been amazed and delighted that my chronic and daily lower back and hip pains evaporated during the first and second trimesters. I think this is due to the flood of ligament loosening hormones, etc. that prepare you body for pregnancy and childbirth. I expect that after pregnancy and delivery thee lovely lubricating and stretching hormones will evaporate, and my lumbar spine will return to its former state of desiccation and disrepair. So I'm enjoying the benefits of hormone induced hip-pelvis-back relaxation.
Now that I am in the third trimester, and showing and carrying more weight, I am feeling tension in my mid back, but generally can deal with it by walking (sitting seems to set it off, I am inattentive to my sitting posture). I am also apprehensive about the next three months, and about delivery, particularly about the prospect of back labor. I don't think, however, that there is any correlation between history of back injury and the type of labor you will have. I have also heard that going into a pregnancy with a higher than general pain threshold can be ultimately beneficial in labor, because the early and mid stages of labor contractions are painful in ways that are ''familiar'' and you might already have internalized strategies for dealing with pain, and a more realistic sense of what your body can handle.
I have started birthing classes (Kaiser's generic type), and am an idiot about doing my homework. If you can take classes on breathing and relaxation techniques, this will probably be really helpful.
My final words of wisdom. Plan and prepare, but also know that an attitude of total surrender is the real ticket through this process. Have a wonderful ride. Keep breathing.
I had my amnio at 40 and I was on my own for the process. My husband couldn't come and I opted not to have a friend come in his place. The procedure is quicker than you think. The doctor and techs do this all day long so they know how to keep the atmosphere calm. I focused on the ceiling and my breathing and my cute baby on the monitor.
You will need someone to drive you home. It would be ideal to have someone stay with you too. Do you have any close friends that can pamper you for a few hours? That's what you need. After I got home I lounged on the sofa with a bunch of magazines, a good book and snacks. For some reason, the process can make you feel wiped out. Plan on relaxing for the rest of the day and you'll be fine.
Hi there - I know what you're going through with the amnio - I just had one a couple months ago after getting a questionable result on the AFP test (turns out everything's fine). I was much more worried about the risks of the amnio than about potential genetic disorders. What helped calm me immensely was hearing from all the people (including a lot of stuff on the BPN
site) who had uncomplicated amnios and perfectly healthy babies. Once you start reading people's stories and looking at the numbers, you realize the odds really are in your favor, especially if you go to a clinic that specializes in prenatal screening. The other thing that really helped was visualization - as soon as I found out I needed an amnio, I started picturing my body healing, telling myself my womb would heal up even stronger than before, and picturing the baby being born healthy and strong. It made me feel like I was doing something constructive. The best news is, the amnio itself was a breeze compared to all the stressing beforehand! I just went home and slept after and took it easy for a day or two. Waiting for the results is hard, but keep busy and it goes pretty fast.
Good luck and be strong!
I am 38, and also have an inherited blood disorder and was on blood thinners, so I was pretty nervous about the amnio and the risk involved to the fetus. And I also had gone through a miscarriage (at 10 weeks) prior to this pregnancy with a followup D&C. You know what, the amnio was no big deal. Don't psych yourself out about it. It really was less painful than some blood draws that I have had, and you could barely see the puncture mark on my belly. I felt fine afterward and it was actually a treat to be told to ''rest'' and have others wait on me for a little while as i was still working full time and doing lots of packing as we were getting ready to move. The worst part was the waiting for the results, and imagining all of the things that could go wrong. I can't describe the relief I felt when we heard that everything was ok. When I look back on it, it is just one of the scary things that you start having to deal with on the road to parenthood, to prepare you for the every!
day scary stuff that you just can'
Mom to a healthy toddler
I am 35 and had a nuchal translucency US which much to
my surprise has come back ''positive,'' that is my
age-related risk for Down's is 1/215 and the test results
(size of nuchal fold and blood test) show my individual risk
is 1/213 !! It is a ''positive'' test because it did not come
back as showing a decreased risk for Down's (ie 1/400 etc).
These results show I have a .5% chance of a Down's baby
and a 99.5% chance of a normal baby. The risk of
miscarriage with an amnio done at 16 weeks is .5%...I am
not a gambling woman, and playing out the odds is driving
me crazy. What to do? The other thing is that I am
unfortunately not the type of person who would be fine with
having a baby with Down's, but almost equally, I would be
devastated to lose this pregnancy to an amnio that wasn't
I am 36 years old and I had an amnio done about a year ago. I
had some hesitation about it. There seems to be a huge deal made
about the risks. There is a half hour ''counseling'' before you
acutally get the amnio. And, I must say in all honesty....once
the whole thing was over I just did not know what all the fuss
was about. The people that do the test do it all day long and
are totally professional. You see your baby for the entire half
hour on the ultrasound monitor. The needle does not hurt. And,
if you follow the directions and stay mellow for the next three
days everything should be fine. It is like a pin prick in a
balloon. If you don't make the hole bigger.....it will heal
itself! Good luck! I had a positive experience!
I had an amnio or CVS for both of my kids (I was over 35 for
both) and they both turned out well and I gave birth to two
healthy babies. I recommend you find a doctor who does many
amnios (statistics show that doctors who perform a procedure
often, say several times a week at a minimum, have fewer
complications) and go for it! It did wonders for my peace of
mind. I couldn't imagine going through an entire pregnancy
wondering if my child had a birth defect, especially given my
overactive and fearful imagination during pregnancy.
Good luck and congratulations on your pregnancy.
mother of two
I have had 2 amnios...one at 36 and one at 39 with no problems or
complications. I have many friends who have also had them with
no problems. The important thing is to go to someone who
specializes in this procedure. The first amnio I had was done by
a practice which had (I think) a 1/500 risk of miscarriage (the
average risk is 1/200...0.5% as you said). His name is Dr.
McCallum and he practices on the peninsula and the east bay
I feel for you. I too was not the kind of woman that would be
fine with a downs baby. we elected to have a CVS (with each
pregnancy) so that we could be assured early on that everything
was going to be o.k. I did a lot of research on who was the best
at CVS testing, and ound that Dr. James Goldberg at California
Pacific Med. Center (also affiliated with UCSF) was the best and
had a much lower rate of miscarriage. You might try his practice
to see if they do amnio - if that is not an option I would find
out what the odds of miscarriage are at the practice where you
would be having the procedure. It sounds like you are the kind
of person that should go ahead with the amnio, just make sure you
are inthe best possible hands. I know that amnios can cause
miscarriage, but I have never known anyone who has had an amnio
induced miscarriage - and almost all of my friends and I are 35+
moms - good luck.
In your circumstances I would skip the amnio. At 99.5% your
chance of having a child without Downs Syndrome is very
very good, and the chance of test-related miscarriage is
There are other non-invasive tests your doctor can do that
would help you get a feel for whether your baby has other
''soft markers'' for Downs. You may also want to do Internet
research, or contact a message board like those on Parents
Place.com or IVillage.com. (These are valuable resources
Good luck, I think you're still in the range of your stress is
more of a problem than the statistics.
sounds like you need an amnio if you know you don't want to
raise a Down Syndrome child. The 1/200 chance sounds scary, but
you'll feel much better once you do it. It's not that bad, and
I also understand that the risk here in the bay area tends to be
even lower, because the doctors are really good. And from what
you're saying, it sounds like you could more easily tolerate a
risk of losing the pregnancy than the risk of delivering a Downs
baby. Knowing how clearly I and my partner couldn't do that
made that decision easier for me.
You will probably get some pretty strong responses to your
email. I have ended pregnancies due to amnio results telling
us we were having a baby with down syndrome. I have also found
docs (CPMC in SF and at UCSF) where the risk of miscarriage is
1/400. Some of the post-amnio miscarriages that happen are
babies that have chromosonal issues (such as down syndrome)
that would have ended even if there had been no amnio. A 1/213
chance is not really a ''positive'' - I know women who have truly
come close to having a positive on nuchal screen (1/5) that
later was confirmed by amnio. If you are clear about not
wanting a baby with down syndrome or any other chromosonal
abnormality, I would reccomend an amnio.
I don't know if this will help you, but . . . when I was
pregnant (I was 36 then), I knew I wanted an amnio, but was
confused about whether to have the preliminary testing,
precisely because of the conundrum you are experiencing now. I
dealt with the amnio question by asking my doctor: ''If I were
your daughter, what would you tell me to do?'' He said, ''Skip
the preliminary testing and just get the amnio.'' Which is what
I did and what I will do for my next pregnancy (God willing
there is another), when I will be 38 or 39. My feeling was that
I needed the certainty of the amnio results. I wasn't at all
sure, either, that I would terminate a Down Syndrome baby or a
baby with spina bifida or whatever, but I felt that having the
knowledge before the birth was worth the minimal risk presented
by the amnio. (Of course, you can use the statistics to support
any argument that works for you and everyone will tell you that
they know someone who miscarried following an amnio.) On the
other hand, my best friend, who is pregnant with her second baby
at 41, has always refused the amnio and can live with the
results of her preliminary testing. Good luck with your
decision; it's not an easy one!
Happy with my amnio
I had an amnio when I was pregnant with my first baby at 35 (and
a CVS with the second when I was 38). I had no complications
with either procedure and gave birth to big, healthy babies. We
decided to go ahead witht he amnio because I strongly felt the
need to be prepared if there was something 'wrong'.
Statistically, there was more of a chance of there being
something wrong with the pregnancy than of the amnio causing a
miscarriage. I also think that the stats you get regarding
anmio risks are national stats -- that if you go to a reputable
clinic with loads of experience, your chances are much better.
So, if you decide to move ahead with the procedure, make sure
you're going to a really 'good' place (and fight with your
insurance if they won't cover you going somewhere your OB
recommends). Ask how many procedures they do a year, how
experience the doctor is who will be doing the procedure, etc.
I had my amnio at AltaBates imaging, and the CVS at UCSF.
Good luck to you!
I was in a similar situation last fall. I don't remember the
exact details but my age alone gave me a .5% chance of
Down's Syndrom, however my NT test came back with better
odds than those for my age (36 at the time). Given that the
chance of miscarriage from Amnio was .5%, the NT had
improved my age-based genetic outlook, and my husband
and I did not have clear cut feelings about whether or not we
would terminate if the Amnio revealed that I was carrying a
baby w/Down's Syndrom, we decided not to have the
Amnio. I think it all comes down to what action you would
take if the Amnio were positive for Down's Syndrom. It
sounds like you would terminate. Also, remember that the
.5% chance of miscarriage from the Amnio is a national
average (or something like that, I believe) and the statistics
are better than that at UCSF or CPMC. I didn't ''know'' that I
would terminate, so I didn't have the test. I never regretted
that decision for a second.
Go with your gut on this.
At 35 I too struggled over whether to have an amnio, and was
terrified of having it induce a miscarriage because I had had 2
miscarriages already. After our in-depth discussion with the
genetics counselor, it was clear that the risk of something
being ''wrong'' was higher than the risk of miscarriage.
Therefore, the amnio made sense. Where did you get the
information that 1 in 200 amnios results in miscarriage? At
least at Alta Bates Perintal center, the rate is I think 1 in
400. So I would find out what the rates are at the center where
you might have the amnio. If it were me, I would have the
amnio. Also, it is overwhelmingly likely that everything will
be fine with your baby and then you can be relieved.
I had an amnio (by choice-I had just turned 40) recently and it
is really no big deal. I had mine at the same point in my
pregnancy too. The hardest part is waiting to hear the results.
In my case, I heard the results after 10 days and everything was
fine.The odds are in your favor that nothing will happen. Try to
relax and have faith. You will have access to more information
about your baby and this may give you even greater peace of mind.
I am sorry that you have have to make this tough decision. It's
not easy. I had to make this decision, too. But, I had taken
the AFP test which came back with a 1/180 risk (or .05%) of my
child having Trisomy 21. I decided to do the Amnio (even if the
risk of miscarriage was also 0.05%. I know it seems like such a
low risk (only .05%), but my amnio came back positive for
21, too. Though the AFP has a lot of ''false positives,'' it
pick up actual positives for even the lowest risks.
Ultimately, it's your decision. I would consider amnio record
of the hosptial at which you plan to deliver. Often times, the
hospital's record is lower than the average risk of miscarriage
caused by an amnio.
Be gentle with yourself and do what you need to do.
- another woman who understands
Well, this is a huge decision. I had my daughter at 40 and did
decide to do the amnio, however, it was one of the most
traumatic parts of my pregnancy. Ranking up there with my c-
section, even. I felt really nervous about the risk of
miscarraige as well, and it was truly scary for me to have the
needle in my uterus. All of that aside, it was truly relieving
to know that she was ok for the diseases that the amnio tests
for. My advice is to do it because you said that you do not
want to have a baby with downs and because you came up positive
on the nuchal fold test. That is what I would do.The other
thing is to get it done by a dr. who has done like 10 million
amnio's. That helped my stress to know that he had done tons.
Good luck and I'm sure that it will be fine, but I won't lie
cause it scared me silly,
I had an amniocentesis with my son, at the age of 37. I don't
think the results would have affected my decision about the
pregnancy, whether to continue it or not, but the knowledge that
everything was OK genetically was reassuring. When my son was
born, he had a facial birthmark (port wine stain)that enlisted
the services of a pediatric neurologist, pediatric opthamologist
and pediatric dermatolgist. So even having the amnio, other
things could go on with your child that can't be foreseen. If it
would be reassuring to you, I would recommend the amniocentesis.
I had a similar experience with my pregnancy last year. I was 34
at the time. I had the nuchal trans., but my ob said that my
risk of having a Down's baby was the same as my risk of having a
miscarriage w/amnio..this was based on the blood work. I chose
to have the amnio. The procedure went fine, and I got the
results quickly. I was thrilled to know that my baby was fine. I
am a worrier, so I would have spent the rest of my pregnancy in
total anxiety had I not known. Having a Down's baby would be too
much for us as my husband is older than I am, and we would have
no one to look after the child when we got older and passed
away. I have 2 friends (38 & 41) who each had amnios w/their
pregnancies. They are fine, and so are their babies.
Good luck to you.
needed to know
I also got pregnant at 35 and also had a NT that came back with
increased odds for a genetic problem. My OB's response was
that the NT test makes more people panic and get amnios than
need to, but my mom's sister had downs and I consequently had
very strong feelings about it. Even though I was worried about
the risks, I felt that it would be worth it.
I had my amnio at the CPMC genetic clinic in SF (the doctors
there are VERY good at what they do and their success rate is
higher than the national average). The results showed that our
little guy had another kind of genetic problem; he had an extra
X. We then had to make the hardest decision of our lives
(luckily the Bay Area has a great support network).
So....my recommendation is first, know that the odds are still
in your favor for everything to be OK. Then, if knowing that
your fetus has a genetic problem would change your future
actions (i.e. terminate or not, get special treatment or not),
I definitely recommend getting an amnio. If knowing would NOT
change your future actions, then it's probably not worth the
risk of an amnio.
*We did get pregnant again soon after and went straight for the
CVS instead of the NT & amnio route (and plan to do the CVS
again for our next pregnancy) and now have a happy little one.*
Of course no one can tell you what choice to make, but I did
notice from your post that you say that you would be almost or
nearly as bothered by losing the baby to miscarriage as by
having a DS baby. To me that was somewhat telling. And I
don't mean that in any kind of judgmental way. I would have
the amnio myself because I would want to know if the baby had
DS. Also, .5% is a very small risk. I have lots of friend who
have had amnios with no problem whatsoever. Anyway, I think
you should follow your heart, which YOU know best, but the way
I read your post, you seem to be leaning toward the amnio for
peace of mind. Good luck with your decision and hope you have
a healthy baby in there!
I had a 1:61 for Down Syndrome on the AFP (different from my
1:300 age-related risk). THere were also 2 soft markers on the
19 week u/s. After much hard debate, we decided on the amnio
(even though I wouldn't terminate based on the results- also a
tough decision- AND we were terrified of losing the baby- lost
one at 15 weeks last year). Our miscarriage risk was 1:400 or so
for my gestational age and the Dr. performing the amnio.
Well, the results came back totally normal today!. Am I happy I
had the amnio? Sort of. It's great not to worry about it anymore-
but I feel silly because the risk of having a baby with a
problem was so slim amyway.
Personally, with a 1:over 200 risk of Downs and that or more for
miscarriage, I wouldn't do it. But that's me.
It's such a hard choice. You have the answer inside.
i don't know if my long, convoluted story got posted, but i just
recently went through what you did, with my risk being at 1% -
twice the normal for my age (1/190). i'm kind of irritated i
took it, but in short, i think it did offer peace of mind for my
husband. philosophically, i don't know if i did the right thing
by taking a chance on losing my baby. it's such a hard decision.
find out how often the center you'll be going to does amnios.
this can dramatically decrease the risks of complications.
with your risks given, they are so low, and essentially equal to
the population, i fully support you not taking the amnio. i
think my husband played a large role in my decision - i think he
was a little more anxious than me.
feel free to e-mail me.
In this case I think the risk factor of miscarage is secondary.
I think that your position on not being comfortable with having
a Down's Syndrom child dictates that you MUST have the amnio
early since I'm assuming that you would then want to terminate
the pregnancy if it's positive. The longer you wait the harder
it is to do that, both medically and spiritually. For our first
child we didn't have the amnio since we decided that we would
accept a Down's syndrom child is that's what happened. But for
our second child we did do the amnio early so we could take
action early since we had our first child to consider as well as
I thought a lot myself about these questions (I was also 35);
The basic issue is your tolerance for risk. You have to weigh
the risk of losing a fetus due to the amnio (which is low)
versus the risk of carrying a fetus to term that might have
Downs or another chromosomal problem that could be detected
ahead of time. The decision also depends on how difficult it
was for you to get pregnant, and an unknown risk of the grief
of a pregnancy loss. HOWEVER, you have to weigh these possible
negative outcomes, which are TEMPORARY (for the most part),
compared to the risk for you of having to care for a child with
Downs for the rest of your life. You mentioned that you didn't
think you could handle this. Of course we end up handling
whatever we are handed, but the risks of miscarriage/amnio,
etc., are short-term, and the ''risk'' of having a child with
significant impairments has a much longer-term impact.
I think you're brave to acknowledge your own comfort level, and
I think if the possibility of having a child with downs (even
though it is STILL low at 1:213) is causing you significant
stress, then the amnio may really be worth it for your peace of
mind. This is particularly true if you didn't have much
trouble getting pregnant in the first place.
What a difficult decision you have on your hands. If you would
not be fine with a child that has Down's Syndrome, the amnio
then becomes a necessary procedure to give yourself peace of
mind. The one thing you don't want to do is to worry throughout
your pregnancy as to whether your child will have downs
syndrome. Don't put yourself through that agony. Talk to your
doctor and your genetic counselor to get their advice also.
I had an amnio because of my pregnancy age, 39. The previous
year, I had a miscarriage. I could've had a child born with
Down's syndrome also. I was afraid of a miscarriage with the
amnio, but like you, I didn't want a child with Down's Syndrome,
so I had the amnio. The procedure was entirely my decision. I
had it done. When the results came back normal, I was so
relieved, I cried tears of joy.
Good luck with your decision.
I understand how painful a decision this is for you but for what
it's worth I think you should have the amnio. At CPMC (in SF)
the rate of miscarriage from amnio is lower than 5% and I had an
amnio once (age 38) and at age 42 a CVS (even riskier) without
any trouble. The doctors there are really 1st rate! Since you
don't feel you'd be able to care for a Down's baby, what choice
do you really have? I think you should also factor in how easy
or difficult it was to get pregnant this time. At your age you
do still have time to have a healthy pregnancy. I'm sorry you
have to go through this and I know it would be devastating to
terminate/loose the pregnancy as well as to have a baby you feel
you can't handle!
I think you ultimately have to decide what would be worse for
you, to have a child with downs (or another detectable disorder)
or to have a miscarriage.
In my case, I rather lose a pregnancy than have a Downs child, so
I would have the amnio.
My sympathies! I recently went through some very similar
handwringing, in a very similar situation, though in my case the
nuchal scan came back with a very low risk of Down syndrome (1
in 3000-something) and the AFP with a *very* high risk (1 in 30-
something). In the end, I decided against the amnio, and a few
weeks ago I had a healthy, normal baby girl.
There is no ''right'' answer in your situation, only the answer
that is right for you. Most of my friends said they would have
chosen to have the amnio because ultimately, not *knowing* would
be the worst part for them -- and because they would do the
necessary research to find a doctor whose stats on complications
from amnio were considerably better than the overall average.
(For that matter, I have one friend who *did* choose to have an
amnio after a high-risk AFP result. The doctor she found to do
it had performed over 6,000 of the procedures and had never had
a complication. I can't recommend the doctor because he's in
New York, but I expect we have people with similar records here
in the Bay Area.) But for me, the risk that the amnio would
*cause* a miscarriage or other problem for a fetus that would
otherwise have turned out to be normal, even though it was a
very small chance, was not a risk I was willing to take; I just
didn't think I could live with myself if it happened. On the
other hand, the risk of having a baby with Down syndrome, while
not a prospect I relished to say the least, was something I
could imagine coping with if I had to. And for whatever reason,
decision having been made, I'm the type of person who would not
worry and stress out for the rest of my pregnancy over ''not
knowing.'' I was also fortunate enough, of course, to have had
the two different test results -- I chose to believe the good
result and disbelieve the bad one, a choice that was reasonable
given what limited data exists comparing them.
It was a difficult decision, though. The above is a very
condensed version of my thought process and the conversations I
had with everyone I knew who was or had been pregnant in the
last few years, as well as with Mickye Adams at East Bay
Perinatal, who was very helpful and supportive. My heart goes
out to you, and you have my best wishes for making the right
choice for you and for a happy and healthy pregnancy!
I too had the NT screen with the double marker blood tests.
Luckily, my results for my age (39 at the birth of my son) ended
up being less than that for my age (screen negative). I also had
the other screen test at a later date and that one came out
positive. My doctor felt the NT test was 90% effective while the
other test (forgot what that one is called) was about 75%. So,
we agonized over having amnio or not but decided to not do it
and play the odds. Our baby was absolutely fine.
If I had gotten your results (same risk with downs or with
miscarriage), I would probably have gone through with the amnio.
But, then again, I'm not sure. I remember feeling anxious about
our decision to not have amnio the entire time up until I laid
eyes on my son. It took us about 2 years to get pregnant so a
miscarriage would have been devastating.
I still believe that the odds are with you and everything will
most probably be fine but if you aren't willing to gamble, you
really need to have the amnio for peace of mind. But, remember
too, there are other defects and problems that could arise that
amnio will not guarantee...for instance, the risk of autism is
much higher percentage wise than your risk of downs. And, there
is no test for that. You have no idea what you'll have to deal
with down the road. It's just the risk you have to take if you
decide to have a baby. It is scary, but remember, that despite
how much they guilt and scare women 35 and over, the odds are
still with you that everything will be fine.
Incidentally, I ended up with preeclampsia post partum. My odds
for this were much higher (something like 5 percent of
pregnancies can get preeclampsia) than downs. Yet, I was never
warned about this. It was never discussed. The books I read gave
it only a few short paragraphs. And, even though my blood
pressure was up starting at week 36, the doctor still discharged
me after the baby was born and my post c-section hospital time
was up even though I was beginning to swell, I complained that
my heart wasn't pumping, and I had fluid in my lungs.
I went back to the hospital for another 3 days where they pumped
me with lassex and I peed all the fluid (and, all my baby
weight) in 24 hours. But, while it was happening, I really
thought I was going to die and leave my son with no mother, my
husband a widower.
In the end, we were all fine.
Good luck to you.
for an AMNIO ALTERNATIVE, see East Bay Perinatal Medical
Associates website: http://www.ebpma.com/NT_Screening.htm
Here's an excerpt: NT (nuchal translucency) screening is a new
procedure designed to detect certain birth defects during the
1st trimester, almost 2 months before previously possible. It
is a painless ultrasound examination that visualizes the area
behind the developing fetus' neck, which can accumulate
excessive fluid in fetuses that have Down Syndrome and certain
other birth defects. Although the presence of this finding does
not mean the fetus has a problem, the test will pick up
approximately 80% of all Down Syndrome fetuses when performed by
practitioners certified in this procedure. When combined with
blood testing for two pregnancy-derived biochemicals, free beta-
human chorionic gonadotropin (free-BetaÂ) and pregnancy-
associated plasma protein A (PAPP-A), the detection rate for
Down Syndrome approaches 90%, approximately 30-40% more cases
than with traditional blood screening utilized today
Best of luck
This weekend (Sunday, June 20) there was a cover story in the
New York Times about Pre-natal testing - the pros, cons, larger
medical and social implications. It was really interesting,
and the current discussion about whether or not to have an
Amnio made me think to post this. (That and my personal
experience recently with getting ''ambiguous'' results from a CVS
test, requiring me to wait for 2 months for a confirmation
amnio, which was agonizing. [All was fine in the end, BTW!])
Worth a read - I'm sure the article will be retrievable online.
For what it's worth - the actual amnio process is not a big
deal, the rates of related miscarriage are very low around the
Bay Area. (It is HARD, by the way, to really connect a
miscarriage directly to the amnio, unless it happens in like
the next day or 2... a miscarriage later on could be a result
of any number of things.) I would still make a point of going
to one of the top practices - Goldberg and Otto at CPMG are the
best, and I hear UCSF is good too. Alta Bates Prenatal does
FAR fewer CVS's and I would NOT go there for that test, but I
don't know their amnio practice rate. I'm sure it's pretty
high - it's such a common procedure these days. I wouldn't
sweat the amnio if you're really sweating the possibility of a
special needs baby.
Good luck and try not to worry.
It sounds like the odds of a Down baby based on the nuchal
lucency test are just a bout the same as for your age anyway,
so, although it is not exactly 'negative', it doesn't seem too
I've had three children; with my first one, prgnant at age 35,
the obg still really INSISTED on an amnio, even though my risk
of abortion from the test would be highter then the risk of Down
at my age!! I refused. My second, pregnant at 37, my blood
test was positive and my (highly alarming type of midwife, as I
later found out) really insisted on an amnio, which I did; it
was negative, as I already knew in my gut. I absolutely
detested the test; I hated to invade so into the baby's sacred
space; my baby son foetus moved an extreme amount for the couple
days following it; plus, I was not allowed to lift anything over
ten pounds for a couple days, which meant for me I had to hire
babysitter just to help me with my then two year old for 8 to 10
hours a day; a little fact they never mentioned to me until
after the amnio. With my third, pregnant at 40, I just had an
intensive Ultrasound done, they looked at nuchal ligament
thickness and heart chambers pretty closely (I think these are
areas often abnormal in a Down's baby) and it looked fine. I am
SOOOOOO glad I didn't have an amnio done on her. She's a
beautiful normal child too. In short, in my experience, the
medical professionals way overstress having amnios; it's like a
mandate, so society won't have the expense of caring for a Down
person. One thing the amnio won't tell you either, is if this
baby will have severe or very mild Down's.
I am not too familiar with the nuchal lucency test, I think they
came out with it just after I had my last baby. I know a friend
though, in a very similar situation, who was also pressed to
have amnio after a ''positive'' nuchal lucency. Her daughter is
fine too, and the mother was quite young at the time too (I
think 35 or 36 - so young to be considering all these tests at
all, in my mind).
I would really ask a lot of questions: at what point, what
number, do they consider this test negative? How accurate is an
in depth late in preganancy ultrasound to rule out Down's (ie at
a point where you can still terminate pregnancy if you want), va
amnio etc. Really ask them for numbers, because they're really
have a pro amnio bias anyway, so you really have to interpret
the facts for yourself. I think they way overdo it on these
tests, and really cause a lot of maternal and familial stress:
instead of enjoying your pregnancy, you end up running from test
to test, at least that's how I felt. I also deleted that awful
sugar loading test in my last pregnancy: I said, hey, if I'm
diabetic, sugar would show up in that pee test with the stick
you do at every visit anyway. Anyhow, good luck. E-mail me if
you want. Leia
I faced this decision last year and decided not to have the
amnio. Although the risk of amnio induced miscarriage in my case
was about half of the risk of Downs, somehow the miscarriage risk
*felt* high and the Downs risk *felt* low to me. My decision in
the end was based on emotions rather than numbers: 1- it just
felt wrong to violate the womb by sticking a needle in it, and 2-
I came to realize that what I wanted to know wasn't ''does the
baby have Downs?'' but ''is the baby fine?'' and there is no test
that can tell you ''is the baby fine?''. Not to make you worry
more, but so many things can happen during pregnancy, delivery,
infanthood, childhood and on that I decided knowing the baby did
or did not have Downs wouldn't solve the bigger question and I'd
just have to make peace with the basic element of risk that is
always present. Which I have.
- good luck with this hard choice
I just finished spending the weekend with my sister and brother-
inlaws, and their two children. Their older son (almost 3) has
Down's syndrome, and a host of other related health problems.
He's had several surgeries, been near death several times, and
is still on an oxygen line at night, a feeding line, and has to
have his trachea suctioned out frequently. He also is very
withdrawn (may be autistic, or at least deeply depressed), and
is not interested in interacting with relatives or other
people. I say this to remind people that not all Down's
syndrome kids are happy positive kids who are a joy to be
around. He has nearly ruined their marriage, and their younger
daughter gets very little attention.
They did not do amnio the first time because my sil was 35 and
they thought it would all turn out fine. They DID get amnio
the second time, because they knew they could not handle
another kid with birth defects. I also have another
acquaintance who recently had amnio and make the difficult
decision to have an abortion. I did the nuchal translucency
and blood screen when I was pregnant (I was 33), and the
results were negative. If we get pregnant again, I have no
doubt that I will have either CVS or amnio.
A mom who knows her limits
After all the discussion I had to chime in. At age 37 I found
out our baby had Down Syndrome. I would have been 37 at
delivery. Second pregnancy, 38 at delivery, Down Syndrome
again. I hate to tell you, but it does happen. Most people
don't talk about negative amnio & cvs results - many wome! n tell
friends and family they had a miscarriage. One other thing -
until you are given negative results from an amnio or cvs,
parents really do not know what they will do. This is not to
scare you but to let you know it does happen.
the other side
My first child I had when I was 34, so I had an ultra-sound and
AFP test but no amnio. My second child I was 37
with no indications of any problems, but my ob was pushing for
the amnio. Also many of my friends had also had aminos, and
thought it was no problem as well as thought I was crazy for
even questioning it. I was still on the fence about the whole
thing when I went in for a scheduled appointment for a amino.
They do an ultra sound first. My tech was fantastic.
Everything she looked at and measured she told me what it was
and why she was measuring it. She looked for a cleft ! palete,
heart problems, and many downs markers. I can't remember them
all, but the amount of information was much more than it was for
my first child. I'm certain she wasn't suppose tell me all that
she did, but I was so happy and relieved she did. When she was
finished, I told her I really didn't feel good about having an
amnio. I asked her if she saw any reason that I should be
concerned and have an amnio. She said the only 100% is to have
an amnio, but she saw nothing to indicate that I needed one.
The nurse and doctor then entered, and I told them I was going
to skip the amnio, and they seemed a little miffed at me. After
knowing all they can see in the ultra-sound, it kind of felt
like amnio's were a cost center that made the imaging center a
good profit. I really don't know, but I was surprised no one
consulted me on the ultra-sound results before trying to give me
the amnio (well ! the tech did. I think she even said she wasn't
suppose to tell me all the info, but I don't remember exactly)
My child turned out fine, and is currently trying to turn off my
computer because he wants me to read him a book. Just thought
I'd share my experience.
I missed the original posting and I know there have been tons of
replies, but I couldn't resist adding one because I just went
through this decision yesterday and found it very stressful. I
had a nuchal translucency test that came out ``negative'' (i.e.
a lower risk for Down's than for my age group, 1/670 or
something like that), and then last week had an AFP test that
came out ``positive'' with a 1/120 risk of Down's. I already had
a 20-week ultrasound scheduled, so my midwife advised me to add
genetic counseling and possibly an amnio. I am 34, but will turn
35 three months before the baby is due. We had previously
decided based on the nuchal results that an amnio was not worth
the risk (1/200 to 1/300 for miscarriage). Even so, I'm kind of
a worrywart, and I worried throughout my whole first pregnancy
(which resulted in an extremely healthy son, now! 2).
I found the genetic counseling to be very unhelpful in making a
decision - the genetic counselor either couldn't or wouldn't
answer my main question, which was: Should we put more
confidence in the NT which supposedly is 90% accurate, or the
AFP, which is only 60-70% accurate? And logically, doesn't it
make sense that my risk would actually be much lower than 1/120
since an earlier test put it at 1/670? She kept saying I was
comparing apples to oranges, since the tests were screening for
differenct hormones. Still unable to reach a decision (my
husband was against amnio, I was leaning towards it), we decided
to go in for the detailed ultrasound and make the decision on
the spot, based on whether the baby seemed ok. Then doctor came
in and answered my main question right away. He said it's always
better to look to the most accurate test, and said having the
normal ultrasound wihout any ``soft markers'' lowered my risk by
another 40 percent. So an amnio would probably be more risky. We
chose to believe him rather than the genetic counselor (who had
also encouraged us to get other testing that seemed excessive),
Since the baby looked so peaceful on the screen, I couldn't go
through with the amnio and I feel ok with it.
An interesting thing the doctor told me is that the AFP test is
not designed for women who have already had the nuchal test.
They are both screening tests, but AFP is a much older test, and
nuchal is new. So there isn't yet a meaningful way to compare
them, and if you get contradictory results it can be very
stressful. There just isn't real data to compare them. I now
wish I hadn't even had the AFP, since it just added a lot of
There is still a part of me that would like to get the peace of
mind from the amnio, which chances are would not have caused a
miscarriage. It's a really personal decision, and ! of course one
has to come face to face with the gut-wrenching question of
whether you would want to terminate a pregancy because the baby
had a non-life-threatening problem. This can be even harder to
face if you already have another child, who would inevitably
lose out on some attention. Hopefully, one day soon, there will
be some better options forprenatal testing that are more
accurate, less invasive, and don't cause us all such confusion
Sorry to drag this topic out even further, but I missed the
original posting and felt compelled to chime in. I was 37
when I was pregnant the first time. I was always fairly certain
about having the amnio--my mom had them with my
youngest sisters, and I had always been one to ignore
minor risks (like a loss from the amnio) and focus on the
major ones. Two weeks after the amnio, I learned that I was
having a healthy baby girl. Two weeks after that, I was in the
hospital to have labor induced because my amniotic fluid
had leaked following the amnio and my baby had ultimately
died. No one at Kaiser had caught the leak despite
numerous visits to my doctor and the emergency room, and
no one there had told me what to do in the event of a leak
(bedrest, supercareful about infection, etc.). So, not to scare
all! of you, but you CAN come out on the wrong side of those
statistics--and the statistics only count losses that occur
within 2 weeks of the amnio, even when they are clearly
caused by the procedure. With my second pregnancy I had
nuchal translucency screening; had it come back high, I
might have considered the amnio, but with a low risk result,
I chose not to have one. My advice is twofold: First,
ABSOLUTELY have nuchal translucency screening to help
you come up with more information to decide about invasive
testing (and if your plan doesn't cover it, like mine doesn't,
pay for it yourself--it's worth it). And second, consider
whether you would terminate if a chromosomal defect was
found. If you would not, there's no point having the
procedure and incurring the risk. If you would, it may well be
worth the risk.
My husband and I went in for a 16-week ultrasound/amnio. We
were told the brightness of the fetus' bowel (''echogenic
bowel'') is a soft marker for cystic fibrosis, down syndrome, or
a fetal viral infection such as cytomegalovirus or
toxoplasmosis. Extra fluid was taken for CF and viral tests
and my blood was taken, too, to check to see if I have an
active virus infection or if I am a CF carrier. Although we
were told it was likely that none of these were wrong, it was
very late on a Friday afternoon, everyone was in a hurry, and
my husband and I were rather dumbstruck and frightened. What
research I could do on the internet over the weekend while
counselors were not available should be somewhat reassuring to
us (the newest numbers seem to suggest an 85% chance that
nothing is actually wrong) but we are very depressed and
worried. Does anyone have any experience with this? What were
the negative or positive outcomes? Any advice would be very
helpful, both while we wait (and wait) for the results and how
to handle the news if it is bad.
I feel for you. We had the same thing happen to us at an 18
week ultrasound, the day after Christmas when nobody seemed
particularly interested or available. My friend, who used to
be a midwife and still works in the child and maternal health
field, had it right when she said ''oh, that one, it happens all
the time, don't worry about it.'' Our case was a little
different since we already had a CVS done (so no Downs) and had
been tested for Cystic Fibrosis so we knew it wasn't either one
of those things. So, having said all that -- I hope you'll
have the same outcome as we did -- a beautiful almost 2 year
old daughter with no problems. You'll have a difficult few
weeks ahead waiting for your amnio results but the chances are
good (though never 100%) that you'll g! et the outcome you want.
Wishing you the very best in the meantime.
We had one of those findings too and it turned out to be a false
alarm. Like you, we had days of worry waiting to find out
more. My only advice is that the odds are with you on this.
I was told my baby has an echogenic cardiac focus at my 20 week
scan. All the other tests showed I had a low risk of any
abnormality and I was advised not to worry about it. Of
course, I am worried but I found this website comforting. It is
a babycenter chat board with parents going through similar
worries. I hope it helps.
During our 16 week ultrasound, my first son showed an echogenic
intra-cardiac spot -- bright spot on his heart. (They told us
it was either something like a freckle, or an indication that
our son had down syndrome.)
We were, like you, terrified. The supposedly reassuring numbers
did nothing to calm my terror. After a few days of trying to
think positively, we scheduled an amniocentisis (sp) to
conclusively determine the cause of the spot. (All that stress
could not be good for the fetus... I wanted to know and relax
or know and prepare for the worst.)
The great news is that all was and is, perfectly fine. The bad
news is that I was scared untill I got the results of the
amnio. I wish you all the best!
I had the same thing happen at my 18-week ultrasound. My husband
and I attended genetic counseling, where we learned that CF was
unlikely and that my AFP screening test was normal. I left feeling
amnio was unnecessary, whereas my husband left the counseling
feeling the exact opposite. After debating for a couple of days on
to do, I consulted with my OB/GYN who informed me that she elected to
have amnios with both of her children (even though she was under 35)
just to make sure everything was ok. Hearing that made me feel like
amnio was not that big of a deal, and so we went on to have one.
Anyway, the amnio results were normal, and we were able ! to relax for
the remainder of the pregnancy. I went for a follow-up ultrasound a
weeks later, and they found no presence of echogenecity. Good luck to
you, I know what an agonizing time this can be.
mom of a healthy baby
We had the same thing happen to us. They too were very hurried
and vague with us, however, my OBGYN was great. He said to not
worry about it, these ultrasounds actually see too much.
Everything was fine (we were especially worried as I am a CF
carrier and for some reason the clinic would not test the fetus
this time when we had CVS as they had with my previous pregnancy)
There was really nothing we could do except have several
ultrasounds between 17 weeks and 38 weeks when I delivered. Is
spent WAY TOO MUCH time on the internet freaking myself out and
stressing. We had a perfect baby who is now a perfect 2 year
old. ! Best of luch and try not too worry. I'm sure it's nothing.
My heart goes out to you since we went through the exact same thing. I
very worried about the online info I found but when I went in for the
echogenic bowel was seen during an ultrasound) the doctor said that
machines can also produce this over brightness. The weeks of waiting
amnio results were agonizing. It helped me to have a semi-mindless
do ( I organized my son's soccer team) also talking to a few close
helped. I think I posted a similar query to yours here. Also we went a
down the path of what we would do should the news
be bad ie we decided we would continue a down syndrome pregnancy and I
some research on raising ds kids but then I realized that in my heart I
the baby was fine and h! ealthy and I decided to focus on that feeling as
possible. Happily that turned out to be correct and we have a sweet
now. Here's hoping you have a good outcome and that the wait passes
I am scheduled for an amniocentesis at Alta Bates Perinatal
Center; my second child, but my first amnio. I am not typically an
anxious person, but I am a little nervous about this process. I
wondered if anyone had advice/experiences to share both positive
and negative about their own amnio' Also, any specific experience
with Alta Bates Perinatal Center' Which doctors have good track
records, which should I avoid' Anything I should/shouldn't do
before or after the procedure that increases or decreases the risk
of infection' Thank you for your feedback!
Last April I had an amnio at Alta Bates Perinatal. Their record
is outstanding, as was the care I received (except for the
exceptionally long wait to see the genetics counselor). To my
surprise, the procedure was virtually painless. The doctor who
performed the amnio, ironically, was named Dr. Downs. Great
bedside manner and when we experienced a small problem (my
daughter turned toward and came close to the needle after it was
inserted), he and the nurse handled it very well. An amnio is
naturally anxiety-provoking, but I think you are in very good
I was terrified when I got my amnio. I knew someone who knew
someone who had a miscarriage from her amnio and I was so
scared. I knew I would never be able to live with myself if I
lost the baby and felt like it was my fault. I had it anyway
because it was important to me and it was fine. It was a very
simple, mildly painful procedure. The nurse massaged my feet to
try to help me relax. I couldn't relax until 24 hours had passed
and I was sure my baby was fine. I went home after the amnio and
stayed in bed for the rest of the day.
Just a couple of things to note about amniocentesis:
1) Alta Bates Perinatal Center, and the doctors there, have a huge
amount of experience with this procedure, and so the usual ''1 in
100 have problems'' is actually an overestimate for this particular
center; your risk is less there.
2) This from my personal experience: although you hear very often
that the procedure is just a little pinprick, it can in fact hurt
quite noticeably, especially if you get a uterine cramp as the
needle goes in. If this happens (it happened to me), don't panic.
It doesn't mean any sort of complications are happening (I had no
trouble at all and now have a healthy son).
I can understand your being nervous about your amnio. The
thought of a needle being inserted into your abdomen can cause
sleepless nights. I never had an experience with Alta Bates. I
had an amnio done at Kaiser Oakland and I must admit it was done
very professionally. I was 39 when I got pregnant which put me
in the category to get an amnio. Before the procedure I was
assigned to a genetic counselor who explained genetic disorders
and the entire amnio procedure. When the day arrived I was a
bundle of nerves. At Kaiser Oakland, only a few doctors perform
the procedure so they can become proficient. When I went in the
room and was prepped by the nurse (swabed abdomen with
betadine), the sonogram machine was on and the room was dim. My
baby was no where near where the needle was to be inserted.
When the doctor came in, he washed his hands, looked at the
sonogram machine to make sure the baby was out of the way, took
an ink pen and and marked on my abdomen where he wanted to
insert the needle, inserted the needle into my abdomen, withdrew
the amniotic fluid and was gone. While he was inserting the
needle, he stood in such a way so I couldn't see the needle, but
I was told it was very long. I tensed up and he kept telling me
to relax. The procedure took less than 5 minutes. The doctor
was in and out of the room so fast I said, ''Was that it?'' I
must say that nothing goes through the navel, despite what a lot
of people think which is probably why some people don't get an
amnio. I was glad I had the procedure done because my previous
pregnancy ended in miscarriage so the amnio gave peace of mind
that everything was going to be ok with my pregnancy. I think
that waiting for the results is the hardest because you have no
idea what's going on. After the procedure, I went home and
rested. If you want to know the sex of your baby, this is the
way to find out with accuracy. My results came back in 5 working
days and I had a healthy baby girl who is 2 years old now. It's
easy for me to say, but try to relax and just think about your
healthy bundle of joy that's on the way. Good luck to you.
The fear I had about the amnio was worse than the procedure
itself. For me, the needle going in (and being in) felt like a
pinch that lasted no more than about 10 seconds (one-one
hundred, two-one hundred, etc.) Breathing helped, like the 1st
stage Lamaze breathing. I had my amnio May 2001 at Alta Bates
Perinatal. I don't remember the dr.'s name, it was a woman with
short hair. Before we started, I asked her about her
background, and she told me how many of these procedures she's
done--it was reassuring. The other thing that really relaxed me
was the detailed ultrasound that was done before the amnio. We
learned that we were having a girl, and got to see her beautfiul
head and body, and to watch her move around--she even waved at
us! It was a very moving, emotional experience. So I was in an
amazingly calm, happy place right before the amnio. This was in
marked contrast to the fear/anxiety/dread thing that I went
through in the terrible weeks before my appt. It all turned
out fine, we have a healthy daughter.
I just had an amnio about a month ago at the Perinatel Center on
Telegraph which has recently merged with another one and is now
called East Bay Perinatel (instead of Alta Bates Perinatel). I,
too, was incredibly anxious about the procedure and would offer
this advice. I did the genetic counseling part a few weeks
before I had the procedure (rather than just before)and that
gave me a chance to ask a lot of questions in advance. Also,
while there, I asked the genetic counselor which doctor she
would want to perform the procedure on her sister or best friend
which provided me with a little insight (reading between the
lines)although she remained pretty diplomatic in her answer.
If you cannot schedule the counseling in advance and get your
questions answered, call the center up and ask for
information/statistics about the doctor who is scheduled to do
your procedure. You can also get the website address which
contains the background of each of the doctors.
I tried to get Dr. Marinoff for my amnio, but he was not
performing them during the timeframe that I need to get mine
done. I was assigned to Dr. DePalma and learning that he had
more than 10 years experience and seeing his credentials on the
website provided me with some comfort.
Regarding the procedure itself. I tried to focus on the fact
that it would be really exciting to see the baby for so long
during the extended ultrasound and to think of the procedure
itself as just a small piece of it. Based on a friend's advice,
I had my husband gently rub my feet during the procedure and
tried to focus all my energy on my feet during the needle part.
I did not watch the monitor for the needle part. The procedure
itself was slightly uncomfortable, but not nearly as painful as
I had imagined it would be. I've had shots in the arm that hurt
10 times more. Also, Dr. DePalma told me I would feel a pin
prick and then slight cramping right before I felt them and that
is all I felt. The amnio itself only took about 30 seconds and
the cramping feeling stayed level and never got worse. I had
some mild cramping the rest of that day and stayed in bed the
entire rest of the day, which I would recommend. I did go to
work the next day, but tried to take it easy by moving slower
and not lifting anything more than a few pounds. I did not have
any spotting or fluid leakage at all. By the second day after
the procedure I resumed all normal activity and all has been
The techinician who did the ultrasound and Dr. DePalma both were
kind of on the cold-side, but for me this was okay because more
than anything I wanted competence and total concentration on
what they were doing and was not so concerned with their bedside
manner. And they did answer all of my questions in a nice way.
They just weren't warm and fuzzy at all.
Another thing to note is that when we were leaving the
office,the technician said the result would be available in only
about a week. When a week passed and I did not get my results, I
started getting very anxious and began calling every few days.
When almost two weeks passed and I did not have a result, I
started imagining the worst and thinking it must be a bad result
and they are rerunning it to confirm it and all other kinds of
negative thoughts. Anyway, my results came out 14 days after the
procedure and everything was fine. So don't worry if your
results take that long too.
On a bureacratic note, before you go in for the amnio, make sure
you have the authorization number for the procedure from your
OB's office. My OB's office said there have been some
communication problems since the merger and sure enough when I
checked in for the procedure they did not have the authorization
number and it was helpful that I had it.
Good luck. I hope this helps. You can contact me below if you
want any more info. Whitney
My amnio results came back with a suggestion that the baby
could be Downs Sysndrome. My husband and I have talked about
this a lot and have decided that we will not terminate the
pregnancy. But I am worried about what is involved
in rasing a child with Downs. Does anyone have experience
here' s a link to an excellent resource in the form of a
message board. These women have (between them)
been through everything and can answer questions w/o
making ''judgements''. They helped me in your situation
and were happy for me when I got back trouble free
Hi, my daughter asked if I would respond to you -- I used
to work in the field of advocacy for children with
disabilities -- There is a network of family resource
centers (frcs) whose sole purpose is to offer support to
families of children with disabilities. While you aren't
sure yet that your child will have down syndrome, the frcs
have an amazing network of parent to parent support groups
and parent mentors who are extraordinarily helpful to
families -- A call to any of them will get you hooked into
an extensive array of parents who are raising children with
disabilities -- There is also a down syndrome group that
has a chapter here in the Bay area that the frc people can
get in touch with. Here are the phone numbers of the
family resource centers
Marin - Matrix Parent Network and Resource Center -
www.matrixparents.org 415-884-3535 Ask for Catherine
CARE (Contra Costa)925-313-0999 - Ask for Betsy Katz
FRN/Oakland - 510-547-7322 (they are in the same space as
Any one of them will be glad to talk with you and link you
up with parents who can give you lots of great information.
They are all very careful about keeping information
confidential and protect your privacy. Most of the staff
of the centers are also parents of children with
disabilities - Catherine McQuilkin at Matrix has a son with
Woodbine House has a book called, simply enough, ''babies
with down syndrome'' that might also be helpful to you.
Best of luck
My sister has a son with downs syndrome, who is now almost
10 years old. She was 32 when she had him, and had no
indications that he might be anything but normal. The
shock was severe, and it will always be something she feels
incredibly sad about. Her son is a very happy and loving
boy, with a sense of humor and a large appetite, but in
many ways he still behaves like a toddler. She can't see
when he will achieve compentency or independence in any of
the activities we take for granted in a typical child, or
when she can look forward to a decreased level of diligence
in his care. She has an older son who excels in
everything, and a wonderful supportive husband, and day to
day life is pretty good. But there is no doubt that she
carries extra sadness for this child, who doesn't have any
real friends, who hates changes in his routine, who lives
in a dream world of his own much of the time, and whose
greatest delight is meal time. That said, the child gets
and receives a tremendous amount of love from his family,
his teachers, his brother's friends. I think it would have
been easier if she knew while she was pregnant, and had the
chance to make a choice.
A concerned sister
I have a degree in Special Education and taught school for a
number of years. The kids with Down's that I taught were
almost all so loving and wonderful. They usually brought joy
to anyone associated with them. While they were behind
academically, they were generally happy with life and a
pleasure to be with. I got a lot of hugs!
Several of the parents said that in some ways they considered
it a blessing that they had their kids. It gave them a whole
new joy and a new perspective about the important things in
life. I should mention that the kids I worked with were
considered ''mildly to moderately'' mentally retarded. There
is also the ''severely'' retarded category which is obviously a
more difficult scenario.
That being said, having any child is difficult sometimes and
having a child with a disability can be much more difficult.
If you end up getting your amnio results back and you have a
decision to make, decide what you and your husband want to do
in your hearts and then go with that. You should not feel
pressured or influenced by anyone else, it is your decision.
I would also recommend that any parent of a child with Down's
Syndrome contact school officials at a very early age. Be
aggressive to get the extra healthcare and schooling that you
will need. Early intervention has been shown to be
tremendously helpful (i.e. a preschool class set up to deal
with kids with disabilities, early speech therapy). I did my
student teaching in a
preschool disabled class and it was a nurturing, happy
environment that the kids and the parents loved.
You may also have a ''normal'' baby. Either way you will be
Our eight year old son has Downs syndrome, and he is a
wonderful part of our family. I think the Bay area is a
terrific place to raise a child with any special needs
because of the great variety of resources available. Our
son is in second grade at our neighborhood school and doing
very well. He has to work harder than his little brother
to learn things, but he is reading, writing, full of energy
and stories just like any other little boy. I wouldn't
trade the experience of raising him for anything in the
world. I have learned so much from sharing my life with
him. I think there are much harder disabilities to live
with in this world than Downs, it just happens to be
something we can test for before a child is born. After
being with my son, I would never consider giving up a child
because they had Downs, but many of the doctors I spoke
with (although they had no personal experience) were very
discouraging about the syndrome. I urge you to contact me,
or an agency like the Family Resource Network, Downs
Syndrome League, etc to meet parents and children with
Downs Syndrome and learn more.
I totally applaud your decision to continue the
pregnancy in the case of a down syndrome baby. My
husband and I decided not to do any testing during our
pregnancy even though my cousin (my father's sister's
child) has down syndrome. You will have a beautiful
baby and a beautiful child and - I promise you - will feel
blessed by your decision. Not easy work at all, but so
rewarding if you embrace the challenge. If you want to
read a fabulous account of having a down syndrome
child, I really encourage you to read the biography,
''Expecting Adam,'' by Martha Beck. I recommend this
book to just about everyone I know anyway, because it
is such a page-turner and so beautifully told. Good
luck to you.
First- Don't panic! I (and my next-door neighbor) had
supposed ''markers'' for Down's and both amnios came up
normal- We have both given birth to a normal, healthy boys.
I have heard from many sources that these tests have a lot
of false positives, and that the VAST majority come up
negative in the amnio. It is admirable that you're planning
and thinking of caring for a special child, but the odds are
that you don't need to worry about this just yet.
I am a concerned first time pregnant woman. I would like to ask if anyone had experience or heard about the following doctors who do Amniocentesis. I am especially interested in knowing how experienced these doctors are and what is their rates of complication. However, any information you have about them or other excellent prenatal specialists will be greatly appreciated. Thanks!
From Alta Bates Perinatal Center Dr. Janet Goldman, Dr. David Marinoff and Dr. Eric Spitzberg
From Perinatal Diagnosis Center in SF and Marin Dr. Denise Main.
From Bay Area Perinatal Center Dr. Paula Melone
Alta Bates Perinatal (Berkeley)
Bay Area Perinatal Center (WC)
Perinatal Diagnosis Center (SF)
I just got my results from an AFP test, and they came in borderline
low. My OB says I have a 1 in 150 chance of having a baby with Down
Syndrome. I'm considering having an amnio. Has anyone had an abnormal
result on the AFP for one child and not with others? I know my dates
are correct, and my previous two children both had negative AFPs. I'm
trying to figure out if this sometimes happens with later children and
if the baby could still be fine.
Get the amnio. I've been there, and it's better to know than not know.
I am in my second pregnancy and had a normal AFP the first time and a the situation you
describe the second time. As I am over 35, it was explained to me by both my doctor and the
folks who did the amnio (my husband and I had agreed ahead of time that if the result was
higher than normal we'd do the amnio) that false positives are common in the AFP once
you're over 35 (I was exactly 35 the first pregnancy). Anyhow, we went ahead with the
amnio just to assure ourselves that everything was okay. The numbers on my test showed a
higher possibility of Down than yours and everything came back okay. In retrospect I
realize that my needle-phobia and general distaste for invasive procedures made this
process more stressful than it would have been if I'd just done the amnio right away, but it
wasn't that bad. The odds of your baby having Down are pretty low, if you look at it
from the 1 in 150 perspective (as I'm sure you have).
I had a similar experience with my healthy boy, as did my sister with her
third child (a healthy girl). The AFP is notorious for false positives. We both had the amnio
which was a HUGE relief for us, as I am sure it would be for you.
I was 35 y.o. when I had my first child and had declined an amnio because I figured I had
led a relatively healthy lifestyle. Then I received a low AFP result. It was my
understanding that there were a number of false positives on the low side. Although the
test is designed for spinal abnormalities, researchers had noticed a higher incidence of
Downs syndrome among women who had low AFP results. So, the test is not really designed
to test for Downs syndrome. Anyway, I decided to proceed with the amnio because I wanted
to be psychologically prepared in case my child had Downs syndrome (which she didn't), but
it provided me with some peace of mind regarding expectations. If you want the amnio
though, you should speak up right away, because if I recall correctly, I was barely able to
schedule it within the appropriate window of time after I received my AFP results.
This is such a personal issue, and it depends on how you feel about having a DS child in
your family. But if I were in your shoes I would want the information. The amnio is a fairly
simple and safe test, (I have had one with both my pregnancies) and the results are
accurate. At the least, you will feel relieved upon hearing the results. The other end of the
spectrum will allow you to have some choices. Make some decisions or make the necessary
preparations. Good luck, my best wishes are with you.
The AFP test is very flawed -- it has an extremely high false positive rate! With my first
child (6 yrs ago), I had a low AFP result. My insensitive doctor referred me to a high risk
doctor for an amnio, wouldn't comment on the false positive rate (which I did not know at
the time), and basically scared me that my child could have down syndrome. I had the
ultrasound and amnio the next day, and all was fine. The amnio was a bit scary and I don't
know that I would have chosen it again if I had more information about what a lousy test
the AFP is!!! My second child's AFP test was within "normal" ranges. Good luck
I had borderline AFP results with my third child: They were high indicating a risk for
neural tube defects. I had a sonogram and my (self reported) dates were off significantly.
They can check for most NTD via sonogram, so we had a fairly clear rule-out, so it's not
quite the same deal.
The thing to remember about the AFP is that it's almost entirely based on statistics, and
the stats change with age. The 1/150 chance you have for a Down Syndrome child with the
exact same AFP results if you are 35 goes
down to something like 1/500 if you are 25. It's well worth looking at your actual numbers
and working from there.
I did a fair amount of research on this topic, so if you're interested in looking at some of the
stuff I looked at, you can get in touch with me. Be warned though that a lot of it was very
technical and I needed help from a statistitian to interpret it intelligently.
To answer your question, since the AFP is based on your age, and that, presumably is older
than when you had your first child, it is absolutely possible that it could be different enough
to cause a low result.
You should also talk to a genetics counsellor if that sort of person doesn't irritate you... I
think they are covered by the California Department of Public Health's Expanded AFP
program. The one I saw was affiliated with East Bay Perinatal at the Alta Bates Center on
Telegraph in Berkeley. They will take a genetic history and have access to the
numbers. They often want to do an amnio at the same time, which after they did the
sonogram on me I declined.
The good news: I had a perfect baby last August.
AFP tells you only the probability of the baby's abnormality. While it is quite possible for
your baby to be totally healthy with that level of AFP, you might want to consider doing an
amnio if you really want to be sure.
AFPs often show false positives. Each pregnancy is individual so having had a "clean" test
doesn't mean that you won't have a false positive in a
subsequent pregnancy. Chances are everything is fine and the amnio will
reassure you. If, however, the positive turns out to be real, then there
are many resources for you here in the Bay Area. Should you choose to
terminate and would like information on support groups, therapists, etc.,
please don't hesitate to email me.
I had a very similar AFP result (indicating a 1 in 110 chance of Down
Syndrome), and our baby was born without Downs. (I don't actually want to
say she was "just fine," as if there is something not fine about Downs
children.) We decided not to get an amnio since we knew we would have the
baby no matter what, and there is a chance of miscarriage from the
procedure. We did get a Level II ultrasound, which is a long, detailed
view that, as I understand it, is getting very reliable at detecting Downs.
In my experience, it was important to think carefully about what I'd do
with the information if I had it. I had originally decided when I got
pregnant that I wasn't going to do an amnio or other genetic testing and
then for some reason got the AFP, which seemed more innocuous to me. When
I got the result I felt very strongly that I wished I hadn't gotten the
test -- I worried much more about the pregnancy after that, and I felt as
if the testing created a strange, contingent quality to my pregnancy.
In any case, the AFP is a screen test, resulting in a huge number of "false positives." When
I asked our genetic counselor how many of the women tested showed some "abnormal" AFP
result, she said about a third. I think it's also worth noting that statistics can be very
misleading. In my case, the test results were presented as if a 1 in 110 statistical likelihood
of Downs was a high incidence, while the 1 in 100 chance of miscarriage resulting from
amniocentesis is presented as a very low risk. In your case, 1 in 150 translates to a 99.33%
likelihood for no Downs.
I think it's important to correct some misinformation about testing. The
risk of miscarriage from amnio is NOT 1 in 100. It is anywhere from 1 in
200 to 1 in 300 depending on where you have the tests done. CPMC and UCSF
both have very good, very expert facilities. Furthermore, the AFP is not a "bad test." It
is simply a screen. As such, there are necessarily more
false positives. As someone who terminated a pregnancy due to a genetic
abnormality once, I myself no longer do either the AFP or the amnio. I go
directly to CVS, a test I find personally more acceptable as it is done at
approximately 10 weeks. Again, both CPMC and UCSF have wonderful facilities and
expert physicians and I would never go anywhere else to have that test done.
I second the endorsement for a CVS if you think you're at higher risk
for genetic abnormalities or if you don't want to wait for an
amnio. The CVS is becoming much more common, and if done at a
reputable center with experienced physicians, the risk can be no
greater than that of an amnio. As an older first time mother, I had
one at 11 weeks with no complications at all, and far less discomfort,
so I'm told, than one has with an amnio (a CVS is usually done
vaginally--no horse needles). However, I think it's important to
point out that the AFP is still recommended for women who've had a
CVS, since, unlike the amnio, it can't test for non-genetic
abnormalities such as spina bifida and other neural tube defects (as
my genetic counselor put it, for "holes in the baby"). My
understanding is that if the AFP comes back marginal or worse, then an
amnio is still recommended to check for neural tube defects etc.
Friend's Anxiety awaiting amnio results
A friend of mine is pregant with her first child at age 36 awaiting
amnio results. She just heard bad news of another (younger) friend's
recent birth of a second child. Without opening a huge discussion,
what was the best advice and/or words of comfort you received
regarding anxiety over a child's health? Sometimes hard facts and
science works best, other times it's more spiritual. I find for me
it's a bit of both. I'm really curious to know what helps
others. Thank you.
When my amnio results came back with my worst fears confirmed (and I
chose an abortion), what I really wanted to hear from people were
words that confirmed my sorrow, my loss of a family member, loss of
certain dreams and projections of my future. What I did not want to
hear were words affirming the importance of a woman's right to choose
(sure I felt it, just didn't want to hear it), words affirming the
difficulty of the choice process, etc. The very worst words I heard
were from my best friend: "I'll bet you don't feel pregnant anymore."
(I forgave her; she's never been a mother.)
I had my first child when I was 38 and my 2nd at 42. I found my best comfort
was education. I knew what the odds were for abnormalities, but I believed my
babies would be normal. Though I don't really remember too well, I don't
think I worried about results. I think having a positive attitude and
whatever prayer works for your friend is probably her best bet. What is, is.
It's the waiting that's difficult....the worry and anxiety is not going to
change the result, so it's a lot healthier for mom and baby to try to be
patient and positive as the time passes. I decided that if there were
problems I'd deal with them at that time. I've known many women having babies
between 35 to 45, and though this doesn't say anything specifically about
your friend, of all the women I've known of only 1 person in 9 years has had
an abnormal amnio. I hope ;your friend can relax and try not to worry. Good
luck to her. June K
Not helpful for me: comments like "they can do so much with hearts these
days", "you will really have to work on your relationship because, you know,
families that deal with these sorts of things are more likely to break up"--a
true quote, from my MIDWIFE no less, and "well, she won''t be a soccer
player, but she'll probabably do just fine".
My advice regarding this topic is if you don't know the family well, say
nothing. Allow them to bring it up, then ask if there's anything you can do
to help them. I received messages from people I hardly knew regarding my
daughter's condition, and often they came just when I had myself together &
then I'd fall apart all over again. As the family becomes more comfortable
with their child's condition, they will open up more...but for now, unless
they are super familiar, I wouldn't say anything.
You didn't specify whether the problem your friend's child had was permanent
or correctable, so the focus of what you may wish to express may be somewhat
different. In a case like ours, where my child's condition is rare and scary,
but likely to be treatable, it was helpful for me to hear--after
awhile--what a good mother I am, good family, happy child, etc., and how
strong she is. I didn't want people to treat my child as "different" or
"special" because I don't want that stigma projected onto her. The greatest
comments I hear now are how wonderfully she's doing (which, thankfully, she
is...), and comments on things other than her health. People dealing with
these types of things are often struggling to create a sense of normalcy for
themselves. Their children aren't only ill, they're growing up and changing,
and bringing joy to their families, too. Try to notice these things and
comment on them.
I felt a lot of guilt around my baby's heart condition, and one thing it
helped me to consider is that we all have our own destiny--even our tiny ones
get their own path. This helped me to alleviate the guilt that somehow I had
"caused" her problem--which most mothers feel when something like this
happens, even if it is not true.
One more thing--remember that no matter how tactful, respectful & supportive
you may be, the family may not take your words in the way you mean them. Try
to be understanding if they freak out on you (which I did several times,
despite the fact that people were genuine and well-intentioned). They are
going through the most difficult thing, and should be given a world of
latitude when it comes to their responses to just about everything.
Good luck to you, and to them.
My own experience as a first-time mom at 42, and second time at 45, was
great. Both kids are terrific, healthy, and doing fine.
Definitely go for early amnio (available at UC Davis) or CVS (at UCSF) to
allay your fears.
Then remember that our bodies were meant to have healthy babies, and the
odds are greatly, greatly in favor of that occurring.
My advice, having a-waited CVS results twice, is to help her not
think about it, and just wait for the results. There are many more
cases where the fetus is fine than there are cases where the fetus is
not. But, one always thinks that they will be the unlucky one. When
the results are known, you will either have to do some serious
talking, or the worries will evaporate. Just help her keep busy this
I gave birth to my first child at 36 (last year in fact). I didn't really
get any specific advice that made the waiting easier, but my friends and
family gave me the impression that they were sure everything would be fine,
so I followed suit. Of course I wondered what we would do if something was
wrong, but that was never at the forefront of my mind-I was too excited
about being pregnant to worry.
I also heard horror stories about friends of friends having babies later in
life, but there were at least 5 success stories for every one bad one. In
fact my 43-year old cousin in law recently gave birth to her second child-a
healthy baby boy.
36 may have been "old" to have a baby a decade ago, but I don't believe
women who have taken good care of their bodies and have gotten continuous
prenatal care are not at as much risk as the statistics and doctors seem to
say. I think alot of our popular culture revolves around perpetuating fear
(via 20/20-esque TV shows, newspaper stories, etc) because that's what
sells. If your friend can ignore the media and other people's unfortunate
circumstances and listen to her body, she might feel better about things.
I think the best thing you can do for her is to be supportive, optimistic
and excited for her!
Amnio for high-risk pregnancy?
I want to discuss my very important problem:
Who has passed through amnio, please, share the experience or who
has decided not to do it, share the advice. My doctor is very concerned
about doing it because of being in high risk pregnancy. But I am also
concerned that being older than 38 may be it's better to do it. Thank you.
I just went through the amnio dilemma, and finally decided to do it. First
pregnancy, age 33, no worries. Second pregnancy, following a miscarriage,
age 37, all of a sudden they talk "high risk." Remember that the "risk
factor" is a statistical rate of all pregnancies, yours is unique, you need
to decide what's best for you. I was very afraid of miscarriage related to
the procedure. Some other things I thought about: if there is something
wrong with the baby, would I abort? At what level of wrong? At 17 weeks
gestation that's a significant decision. I know quite a few people age
37-40 who decided not to do it because they it wouldn't change their minds
about keeping the child. I thought about the quality of my older
daughter's life if a significantly impaired sibling came into the picture.
Also, the income/career factor. And bonding; it was a lot easier to feel
close to the little thing after seeing detailed pictures via ultrasound and
finding out that, genetically speaking at least, things seem ok. Side
benefits (at least for us): found out that it is a girl, (and my daughter
promptly named her) and we could start planning for the future more easily.
The physical experience: not pleasant, not horrible. The scariest thing
was seeing the needle on the ultrasound and watching the baby's little head
bob closer to take a look. If you decide to do it, please remember to take
very good care of yourself for at least 3 days. Good luck!
1. my wife had one b/c of her age at pregnancy. The procedure proved
quite unpleasant and invasive, something made worse by the calousness of the
MD performing it, and by having had to sign liabilty release forms in
case accidental delivery, and the loss of the baby were to occur. We
decided that, even though she is yet older, we would forgoe the procedure
were she to become pregnant again. To a large extent, I think that we were
pressured into it by Kaiser for some reason (are they afraid of having
to provide care for babies born with abnormalities?)
2. I read somewhere that a new procedure has been discovered that is
far less risky and invasive and that fills the same purpose as an
amnioscentesis. I am sorry I can't remember more, but check around.
I was 37 when I became pregnant and was therefore advised to have an
amnio or CVS (i think it stands for chronovilli sampling or something
vaguely like that). The latter procedure can be done earlier in the
pregnancy, but sounded more invasive to me (entry route is not belly but
vagina) and also (I think) carries a slightly higher miscarriage risk.
Someone also told me that there is a greater risk of false "positive"
results for birth defects. So I opted for amnio. I requested Dr. Chueh at
Alta Bates Perinatal. She was great! The worst part of it was the gallons
of water I had to drink for the ultrasound - having to pee so badly made me
very cranky. (You are permitted to pee before they actually draw the amnio
fluid THANK GOD). (I also learned from a friend who is Dutch that in Europe
they DON'T want you to drink water before ultrasounds- this is a U.S. thing.
Another way to torture women, I guess...) The amnio procedure was not
uncomfortable at all - about like getting a flu shot. The other very
difficult part was waiting for the results. Being very pro-choice and rather
pragmatic, I assumed I would of course abort if there was a serious problem
with the fetus. After seeing my baby happily boing-ing up and and down in
utero, I would have had a much more difficult decision to make had there
been any problem (there wasn't). I think, though, that it is really better
to know one way or the other. If there is a problem, you can prepare as much
as possible. It is a very personal decision, though. Also try not to let
the genetic counseling scare you too much. Yes, there are lots of
possibilities of things that can go wrong... both before and after your baby
is born. Focusing on them can make you seriously crazy.
I have a few opinions to share regarding amniocentesis. It seems that
every woman l know who is having a baby after age 35 just assumes that she
must have amniocentesis. My OB encouraged me to have one when I was
pregnant with my daughter in 1994. I was 35 then, and I have an aunt who has
Down's Syndrome. (My grandmother gave birth to her after age 40.) My husband
and I decided that we did not want amniocentesis for a couple of reasons. It
is an invasive procedure; there are risks, and we did not want to take
those risks; and since we would not abort if a defect was found in the
fetus, we decided we did not need the test. My family has a gene that causes
missing joints in the fingers and toes. This is a minor "defect," but having
it gives me a different perspective. What if I was a person who wanted to
make sure that my fetus was so perfect that I just had to test for this
gene? That is, of course, if there were a test for this gene. How far would
I want genetic testing to go?
I went ahead with the AFP test (Alpha-feto protein) because they just
tested the mother's blood. My OB called and said that my result was in
the range that ruled out neural tube defects but could indicate Down's
Syndrome. She recommended a dating ultrasound and an appointment for
amniocentesis. I burst into tears, thinking something was wrong with
my baby. I went to the ultrasound with great anxiety and I was in tears
while I was on the table. I was afraid to look at the screen. When I did,
the technician was scanning the head. I say a two perfectly symmetrical
hemispheres of the brain, and a message came to my mind, "Everything
is okay." I told the technician that we did not want to know the gender.
She said everything looked just fine. Afterwards, we discussed amnio again
and decided it was time to jump off of the pre-natal testing conveyer
belt. We did not do it. We did some looking into AFP, and found some
information that stated that many female fetuses can give the AFP test result
that we received. That is interesting, since I did give birth to a very
healthy girl in May 1995.
Since this experience, I have developed a stronger conviction that the
womb is a scared place when a baby is growing in it. I am not afraid of
needles, but the thought of sticking a needle into this sacred place just
does not feel right to me. In addition, I realized that there are no
guarantees when you have child. There are no tests that determine whether
your child will be healthy his or her entire life. There are no crystal
balls that show you the accident the child might have in kindergarten that
leaves them with a permanent disability, and there is no way to predict that
your child might be a really awful person to raise. A woman I worked with
said it well, "It my day, you got what you got."
There is a procedure called chorionic villus sampling (CVS) that is
performed earlier than amnio, at about 10-12 weeks that takes a sample
from the chorionic villus (of fetal origin attached to the placenta? I
don't know the specifics) and has a fetal loss rate similar to
amniocentesis. There were studies that implicated limb defects when this
was performed earlier than 10 weeks, but the occurrence is about 1 in 3000.
Advantages are: early diagnosis before extensive bonding, earlier peace
I had amnio with my first child. I turned 36 a few months before his
birth, and my "advanced maternal age" was the only real indicator of
"high risk", and therefore the reason that we had the test. It was
slightly uncomfortable, physically, but mostly emotionally - what
would we do if... Even as "high risk" (+35 for first pregnancy)
statistics were still on our side, and everything was fine. We were
advised to use an MD who specialized in these procedures - many OBs
can do it, but if it's basically all they do, they are more
experienced. We used a perinatologist, but this was not in
California, so I can't recommend anyone. He used a lab that got us
results in just one week, which was great, but I don't know how much
choice you have with that.
For my second pregnancy, (age 40) I had "CVS" (chorionic villi
sampling - not sure of the exact spelling) in which they take a bit
of the placenta rather than the amniotic fluid. It gives you the
same genetic information and can be done weeks earlier than amnio.
(I forget the exact time, but something like 8-10 or 12 weeks rather
than 14 or so.) We used the same physician. It was a great relief
to us to be able to do this test so much earlier - able to really
celebrate being pregnant, no longer walking around not wanting to
talk about it just in case... The procedure seemed slightly more
uncomfortable than the amnio, but I mean slightly. I know other
women who had both and thought that the amnio hurt more, so who
knows. In either case it takes literally seconds. It was like a
little pinch. Personally I would advise against watching the screen
as the needle goes in, but I'm pretty squeamish. My husband watched.
My husband drove and I laid low for the rest of the day both times
(as much as you can with a three year old running around) and didn't
experience any ill side effects. Maybe slight cramping, but nothing
that I would have noticed, if I hadn't been looking for it. At the
end of the day, neither procedure was physically uncomfortable enough
to not want to do it, and the peace of mind it brought us was great.
These are both invasive tests, but I have no history, or family
history of miscarriage, so no one was advising I not do it for any
reason. I also know several people who didn't have either test, even
post 35 years. It was not clear from your letter, but it sounds like
your doctor is advising you not to do it, because he/she's worried
about complications - I believe it carries some risk of miscarriage.
I would ask your doctor more details as to why you should or
shouldn't do it, given your high risk status, and if you feel he/she
can't be objective, get a second opinion from another medical person.
Mine was a very high risk pregnancy, due to many factors. I
was 38. It was my first pregnancy. I had some specific health
complications, among them, endomitriosis. An amnio was being considered,
but my doctor was wary of it for the same reasons I am sure your physician
is pondering. What was decided was to do a rather new procedure (then),
which is called a Chorionic Villus Biopsy. You get the same information, but
but the procedure is done sooner (I think 8-11 weeks.) What we wanted
to avoid was going the full 21 weeks to find out about the results of an
amnio. The reasoning was that if the results indicated that the pregnancy
had to be aborted, to have to go through that and then another, subsequent
pregnancy would be life threatening to me. (It sounded a bit alarming
at the time it was intoned, but as the pregnancy wore on (and on and
on and on) it began to ring true). The Chorionic Villus Biopsy,
evidently, is thought to be less risky in some cases.
AND THEN: It turned out to be twins. What we wound up doing was
flying to Philadelphia to the only place where the CVB was performed
on multiple pregnancies (in 1986). Everything went swimmingly. Our
twins are 12 years old now, and I'm worrying about Junior High Schools
instead of Chromosome configuration. Much ado about a procedure.
But why not talk to your ob-gyn about the CVB. Maybe it would be adviseable.
It was fairly painless, considering. The sample is taken vaginally rather
than through the abdomen. All the genetic information you get from an
amnio can be gotten from the CVB. Ask
your ob-gyn. This brings out the cynic in me, this does. I wonder if
ob-gyns are pressured not to mention the Chorionic Villus Biopsy because
it's newer (not experimental, just newer) and not as widely practised,
requiring specialists. (Rats. I hate HMOs.) Good luck. and
I underwent a similar procedure, CVS, which is slightly more invasive
and thus more risky than amnio. I did it because I was urged to undergo
amnio by my doctor since I was an older mom (38 going on 39). Her concern
seemed to be the possibility of genetic defects, and Down's syndrome was
mentioned most frequently. In retrospect, I wish I had not gone with the
CVS (I chose that procedure because I was leaving the country for a month
and would had to do something that would produce results more quickly than
amnio). I don't think I should have undergone amnio, either. I think
one needs to consider carefully a few essential questions: could there be
genetic defects detectable through amnio that would lead you to choose
an abortion? Under what circumstances would you choose to terminate your
pregnancy? I know that I would not have chosen to terminate my
pregnancy if I had found out that I had a Down's syndrome baby, so why did I
choose CVS? My doctor persuaded me that "forewarned is forearmed," but I
could have simply informed myself of the possible genetic dangers in my late
pregnancy and warned myself in that un-invasive way. There may be
others on the list who can add insights here, but my feeling is that if a
woman is quite certain that she would not want an abortion except under
extraordinary circumstances, she should not expose herself to the
risks and (especially in a case like yours, where the doctor is hesitant)
the guilt she might feel if something did go wrong in a pregnancy that might
otherwise have been viable. Good luck to you.
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