80% of babies with Down Syndrome are born to mothers under

wrote in message
...
About 80% of babies with Down Syndrome are born to mothers under the age
of
35.

so they should quit trying to frighten us mothers over the age of 35!!


Yes, I was quite surprised when I joined the sorority of mothers of children
with Down syndrome to find that they weren't just a bunch of old ladies (I
was 35 when my child was born but 34 when the amnio would have been done).
I have to say, too, that it's the greatest group I never wanted to join.

Realistically, the reason that 80% of babies w/DS are born to mothers under
35 is because most aren't offered the testing that would detect it. The
AFP, often derided because it gives such a high level of false positives
also gives a pretty high level of false negatives as well (mine came back
without any indications of problems). The reason that 35 is the magic age
is that it's the age at which the risk of miscarriage from the amnio is less
than the risk of having a child with DS at that, or a higher, age.

Something like 95% of pregnancies with a prenatal diagnosis of the baby
having Down syndrome (definitively, using amnio) are terminated. I've never
been anti-abortion and I'm still not, but I'm very grateful that I never had
to make that decision (never an unwanted pregnancy and never knew my
daughter would have DS) because emotionally I know it would be very
difficult to deal with whatever the reason.

Leigh in raLeigh

wrote in message
...
About 80% of babies with Down Syndrome are born to mothers under the age
of
35.

so they should quit trying to frighten us mothers over the age of 35!!

But the reason that is so is that:

a) Significantly more babies are born to women under 35 than over it.
b) Amniocentesis and CVS, which can positively identify Down Syndrome, are
not typically offered to women 35 without some evidence of high risk (i.e.,
a "positive" AFP).
c) Since women 35 are more likely to get amniocentesis/CVS, more fetuses
with Down Syndrome are identified before birth, and the majority of those
pregnancies are subsequently terminated.

Any way you slice it, the per capita risk of carrying or giving birth to a
baby with Down Syndrome increases with maternal age. It increases slightly
every year through a woman's 20s and 30s and continues to do so until she
reaches menopause. The only reason 35 is "important" is that it is the point
at which the per capita risk of trisomy (including Downs) is slightly
greater than the per capita risk of miscarriage due to amniocentesis or CVS.
It's not that the risk is vastly greater at 35 than at 34; it's just that
it's enough greater that the risks of the procedure to diagnose it are
perceived to be outweighed by the benefits.
--
Be well, Barbara
(Julian [6], Aurora [4], and Vernon's [19mo] mom)

This week's special at the English Language Butcher Shop:
"Use repeatedly for severe damage." -- Directions on shampoo bottle

Daddy: You're up with the chickens this morning.
Aurora: No, I'm up with my dolls!

All opinions expressed in this post are well-reasoned and insightful.
Needless to say, they are not those of my Internet Service Provider, its
other subscribers or lackeys. Anyone who says otherwise is itchin' for a
fight. -- with apologies to Michael Feldman

wrote:

On Thu, 23 Oct 2003 02:27:49 GMT, "Leigh Menconi" misc.kids.pregnancy :


Realistically, the reason that 80% of babies w/DS are born to mothers under
35 is because most aren't offered the testing that would detect it. The
AFP, often derided because it gives such a high level of false positives
also gives a pretty high level of false negatives as well (mine came back
without any indications of problems). The reason that 35 is the magic age
is that it's the age at which the risk of miscarriage from the amnio is less
than the risk of having a child with DS at that, or a higher, age.



Yeah but I fail to see how that is comparable.. a dead baby VS a mildy retarded baby that can live
to be 49.. of course that's for trisomy 21 the others are a bit worse..


While I totally agree that the notion that risking
miscarriage is directly comparable to having a child with
DS, the reason for that is precisely *because* different
people see the situation differently. Not only that, but
there's no guarantee that DS will present as mildly as you
suggest either. It's a difficult spot for any parent to
be in, having to make that decision. Comments like yours
only make it more difficult, I think.

Best wishes,
Ericka

wrote in message
...
I do not believe that a dead baby and a down syndrome baby are comparable
at all
and I object to doctors who make it sound that way. I'd take a trisomy 21
baby over
a miscarriage any day of the week!

Then don't have an amnio to detect DS. No one's forcing you to do so; a
recommendation isn't a requirement.
--
Be well, Barbara
(Julian [6], Aurora [4], and Vernon's [19mo] mom)

This week's special at the English Language Butcher Shop:
"Use repeatedly for severe damage." -- Directions on shampoo bottle

Daddy: You're up with the chickens this morning.
Aurora: No, I'm up with my dolls!

All opinions expressed in this post are well-reasoned and insightful.
Needless to say, they are not those of my Internet Service Provider, its
other subscribers or lackeys. Anyone who says otherwise is itchin' for a
fight. -- with apologies to Michael Feldman

wrote in message
news
Never said I was being forced. I said I object to doctors saying the risk
of
misscarriage is something to be compared to the risk of having a baby with
trisomy 21.

You can object to it all you want. However, the majority of women who find
out their fetuses have trisomy 21 terminate their pregnancies. This suggests
that for many, if not all, people, the risk of miscarriage is comparable to
the risk of having a baby with Downs. YMMV.

Further more, doctors are *not* saying that the risk of miscarriage is the
same as the risk of having a baby with Downs. They are saying that when the
miscarriage risk rate equals the risk rate for a baby having Downs syndrome,
the *likelihood* of detecting a Downs fetus that the mother might choose to
terminate equals the risk of the procedure causing her to miscarriage either
a healthy or unhealthy fetus. It's not that miscarriage and having a baby
with Downs are alike in any way, shape, or form--just that the likelihood of
the test yielding a result with actionable information is as high or higher
than the risk of the procedure resulting in a miscarriage. Doctors don't
want to subject women to a risky test if that risk exceeds the likelihood of
the test providing results that can be acted upon.
--
Be well, Barbara
(Julian [6], Aurora [4], and Vernon's [19mo] mom)

This week's special at the English Language Butcher Shop:
"Use repeatedly for severe damage." -- Directions on shampoo bottle

Daddy: You're up with the chickens this morning.
Aurora: No, I'm up with my dolls!

All opinions expressed in this post are well-reasoned and insightful.
Needless to say, they are not those of my Internet Service Provider, its
other subscribers or lackeys. Anyone who says otherwise is itchin' for a
fight. -- with apologies to Michael Feldman

wrote:

Never said I was being forced. I said I object to doctors saying the risk of misscarriage is
something to be compared to the risk of having a baby with trisomy 21.



I've never heard a doctor say that. If they do, I agree with you,
because the perception of the severity of the risk differs from person
to person.

That is, all a doctor can tell you is the relative rate of something
occurring - i.e., the *rate* of miscarriage due to amnio, vs. the
*rate* of Downs Syndrome among the general population for people of
varying ages.

Personally, I would consider having a child with Downs to be a much
worse outcome than a miscarriage - so my perception will be different
from yours, and I make my decisions accordingly. My doctor had nothing
to do with it.

Clisby




On Thu, 23 Oct 2003 09:21:39 -0700, "Circe" misc.kids.pregnancy :


wrote in message
. ..

I do not believe that a dead baby and a down syndrome baby are comparable

at all

and I object to doctors who make it sound that way. I'd take a trisomy 21

baby over

a miscarriage any day of the week!


Then don't have an amnio to detect DS. No one's forcing you to do so; a
recommendation isn't a requirement.

In article ,
wrote:

About 80% of babies with Down Syndrome are born to mothers under the age of
35.

so they should quit trying to frighten us mothers over the age of 35!!


But about 90% of all babies are born to mothers under the age of 35. (a
quick web search gives me numbers of 10% to 15% of babies born to
mothers 35+ years old in the United States).

A quick example to demonstrate how what the statistics mean:

If the odds of a 35yo mother having a baby with Downs is 1 in 1000
(.001%),
and the odds of a 35+yo mother having a baby with Downs is 1 in 400
(.004%),
(the above is very simplified for purposes of this example)

Then,

of 4 million babies born in one year,
(multiply by .9) 3400000 of them will be born to 35yo mothers,
and (multiply by .001) 3600 of them will have Downs.

versus (multiply by .1) 600000 of them will be born to 35+yo mothers,
and (multiply by .004) 1600 of them will have Downs.

So, in this example, there were 5200 babies with Downs (3600 + 1600),
and about 70% of them (3600/5200) were born to mothers less than 35yo.

But the odds of a mother who is 35 or older having a baby with Downs is
still 4 times higher.

- Lynn

Clisby misc.kids.pregnancy:
Personally, I would consider having a child with Downs to be a much
worse outcome than a miscarriage - so my perception will be different
from yours, and I make my decisions accordingly. My doctor had nothing
to do with it.
wrote:
Wow, I did not realize that so many people felt that way.

They must, if there is that 95% terminiation rate of a positive amnio
for Downs Syndrome. My impression is that if a woman gives birth to a
Downs baby, she carries on and figures out what to do with the baby to
take care of him or her, but if a woman finds out at 18 weeks, most by
far choose not to carry the baby to term.

I have had now two false positive AFP screens (both boys, I must just
have odd hormone levels with boys). The first time I was not quite 30
and refused the amnio because though the risk was increased 10 fold,
they screwed up the gestational age and I didn't think the miscarriage
risk was worth it without a truly valid test. This time, almost 35,
with the same 10 fold increase, I was down to a 1/44 risk (they
screwed up gest. age again too). That seemed high enough to me to
risk an amnio. The reason it was higher risk is that my age had
increased. The large number of babies born to women under 35 is a
function of how the statistics are presented. MORE babies are born to
women under 35 so fundamentally even with a lower risk, that risk x
lots of babies results in most of the DS babies that are born. That
doesn't change that around and after 35 the *individual* risk is a lot
higher per baby.

I wanted to know, because I felt I probably would not continue a
pregnancy with a DS baby. I have to admit I was relieved not to have
to make that particular decision (the baby came has normal chromosomes
and XY too!). But by having the amnio done, I was saying that the
risk of miscarriage was acceptable if it meant I could have that
decision power if a problem was found and I knew what I would probably
decide if the results showed a problem.

The genetics counselor was excellent and went over issues about Down
Syndrome nowadays versus in the past, that a baby would have a longer
life span, things like that. I wanted more specific data on percent of
babies with mild vs severe problems and had to look that up myself
though. Also, that a lot of people were on lists waiting to adopt
babies with Downs Syndrome. I didn't know that. It didn't help
though.

It's so weird that so many people get tested and only talk about these
BIG (imho) issues only if there is a problem. I'm guilty of that for
sure, having done the AFP again without thinking about what I would do
if it came back a positive screen this time as well! At least I went
into the amnio fully informed, but being fully informed and
understanding what my decision meant to me was a lot harder.

Carolyn
due with #2: 2-16-2004





--
Carolyn Fairman
http://www.stanford.edu/~cfairman/

s writes:

On Thu, 23 Oct 2003 16:47:18 GMT, Clisby
misc.kids.pregnancy :
Personally, I would consider having a child with Downs to be a much
worse outcome than a miscarriage - so my perception will be different
from yours, and I make my decisions accordingly. My doctor had nothing
to do with it.

Wow, I did not realize that so many people felt that way.

Add me. A miscarriage caused by amnio would be terrible, but I'd have
coped, and probably gone on to have a healthy baby at some point in the
future. If my child has Down Syndrome, I will never have a healthy baby (we
intend to have one child, and I doubt that our first having DS would make
us *more* likely to have a second). The most likely comparison of outcomes
is the grief of m/c plus a healthy baby to bring up and love, versus the
grief of never having a healthy baby plus a DS baby to bring up and love.
Comparing the probabilities of these outcomes seems reasonable, though
there's nothing magical about the point where the two probabilities are
numerically equal. I'm sorry if that seems brutal to people, but that's how
I see it.

Having said that, on the basis of non-invasive testing, I decided not to
have amnio in this pregnancy, because given the info from the non-invasive
testing the chance of m/c from amnio seemed too high. If my child has DS, I
will be the best mother I possibly can to that child. I make no apologies,
though, for having wanted to decrease the chance of my having to accept
this challenge. I would prefer to be accepting the challenge of bringing up
a child without DS.

Sidheag
edd Oct 13th

wrote in message
...
On Thu, 23 Oct 2003 11:36:35 -0400, Ericka Kammerer
misc.kids.pregnancy :


I do not believe that a dead baby and a down syndrome baby are comparable
at all and I object to
doctors who make it sound that way. I'd take a trisomy 21 baby over a
miscarriage any day of the
week!

The life expectancy of DS children trisomy 21 has doubled recently. The
other more severe types of
trisomy can be detected on Ultrasound at 18 weeks due to the other
problems that come with the worse
trisomy's. Hey this is what my genetics counselor told me when I had my
level II ultrasound at 18
weeks. Now Trisomy 21 can be harder to detect unless you go the amnio
route. But I'd rather have a
kid with trisomy 21 than have a miscarriage..

That's my choice... others are free to make their own choices and without
criticism from me.


I'm not arguing with your point, in fact I'm living it out because the
choice to decline the amnio was one I made as well. It was my choice not to
have the amnio and I'm living with the consequences. FWIW, if you are
carrying a baby that has DS, the chance of miscarrying *after* 20 weeks is
about 43%. That statistic was posted by Dr Len Leshin on the Down syndrome
listserv today. So even if you choose not to have the amnio, if your fetus
has DS you still might have the miscarriage.

In my case, my daughter stopped growing at 35 weeks and they decided to
deliver. It was then that they discovered that she had DS. I have been
told that she probably would have been stillborn if she hadn't been
delivered when she was. Oh, and I had a fetal echocardiogram while I was
pregnant with her because I had had gestational diabetes in a previous
pregnancy and her report came back as showing no abnormalities. This past
summer (at age 4) she had open heart surgery to correct an ASD, a VSD and a
deformed valve.

Leigh in raLeigh