I'll have to admit this was the case during my brief pregnancy.  When it
came up to talking about amnio, etc.  I ended up looking the doc in the eye
and letting them know that I know people with Down syndrome and wouldn't
think of terminating a pregnancy for that reason.

Beth t.

-----Original Message-----
From: St. John's University Cerebral Palsy List
[mailto:[log in to unmask]] On Behalf Of Kendall David Corbett
Sent: Tuesday, May 31, 2005 5:17 PM
To: [log in to unmask]
Subject: More info on how pre-natal diagnosis of disability could be
handled.

Measure Would Require Doctors To Provide Updated Information To New And
Would-Be Parents Of Children With Down Syndrome By Dave Reynolds, Inclusion
Daily Express May 23, 2005

WASHINGTON, DC--Under a bipartisan measure introduced in the U.S.
Senate, doctors would need to give expectant parents up-to-date information
on Down syndrome and other congenital disabilities before asking whether
they want to terminate their pregnancies.=20

A recent survey of nearly 3,000 parents of children with Down syndrome
revealed that in a majority of cases doctors who diagnosed their fetuses
with the condition focused on the negative aspects of raising such a child
and presented out-dated stereotypes, while ignoring the positive aspects.
This is believed to be a primary reason why 80 percent of women who learn of
such a diagnosis choose an abortion.=20

"In many cases the doctors were insensitive or just plain rude," said the
study's author, Brian Skotko, whose 24-year-old sister has Down syndrome.=20

Senator Sam Brownback, (R-Kansas) and Edward Kennedy (D-Massachusetts)
introduced the "Brownback-Kennedy Prenatally Diagnosed Condition Awareness
Act" in mid-March. The bill would allocate $25 million to provide would-be
parents with more up-to-date, scientific information about such things as
life expectancy, along with how to contact support groups and current
parents of children with Down syndrome, spina bifida, cystic fibrosis, and
other congenital conditions.=20

The legislation outlined below speaks specifically to Down syndrome, as it
is one of the more commonly detected genetic disabilities, but there are
many other disabilities that are detectable before birth that could be
included.  CP isn't often one of these disabilities, but if a more positive
approach were taken with disabilities like Down syndrome, new parents might
be less terrified to find out their child had CP.  I was born with
hydrocephalus, which caused my CP, and my parents were given the option of
not treating my hydrocephalus, and "letting nature take its course," which
would have resulted in either profound cognitive disabilities or death.  Now
that hydrocephalus is frequently diagnosed in utero, and one of the more
common outcomes is CP, parents should be told that neither condition is an
automatic death sentence, or will invariably lead to cognitive deficits.

Kendall Corbett

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An unreasonable man (but my wife says that's redundant!)

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The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all progress
depends on the unreasonable man.

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-George Bernard Shaw 1856-1950

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"One of the dangers of the expansion of prenatal genetic testing
technologies is that expecting parents will experience pressures to
terminate their pregnancies from medical professionals and insurers,"
Andrew Imparato, president of the American Association of People With
Disabilities, told a congressional committee last fall. "Doctors may want to
avoid a complicated delivery, and insurers may want to avoid expenses
associated with the child's disability."

[Editor's note: The Lawrence Journal-World notes that Senator Edward Kennedy
"has a sister with Down syndrome". Rose Marie Kennedy, who died in January
at age 86, was believed to have had mild mental retardation before
undergoing a prefrontal lobotomy in 1941. By all public accounts of which I
am aware, she did not have Down syndrome.]

Related:
"Down syndrome counseling prompts bill calling for more positive support"
(Lawrence Journal-World)
http://www2.ljworld.com/news/2005/may/16/down_syndrome_counseling
<http://www2.ljworld.com/news/2005/may/16/down_syndrome_counseling/>=20
"Parents cite callousness in diagnoses for Down" (Washington Post via Fort
Wayne Journal Gazette)
http://www.fortwayne.com/mld/journalgazette/living/11653954.htm
"Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies
evaluate their health care providers" (American Journal of Obstetrics and
Gynecology) http://media.ljworld.com/pdf/2005/05/16/prenatal1.pdf
S. 609 Brownback-Kennedy Prenatally Diagnosed Conditions Awareness Act
http://media.ljworld.com/pdf/2005/05/16/prenatal2.pdf

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