In an age when we value informed consent and patient
centered care, it’s a travesty that often the worst informed patient is the
mother of a unborn baby with special needs. Everyone she meets in her medical
office seems to be telling her what she should do. In what is often a lonely
and frightening time, she needs the truth about her options for testing and
about the future of her baby and seldom hears it.
A frequently heard comment from such mothers is, “I
felt pressured to test by my doctor.” Some women even report having prenatal
blood tests done without their consent. If a test shows an increased risk for a
pre-natal diagnosis, they often feel coerced by their doctors to abort. Some
expectant mothers have even changed obstetricians late in pregnancy to preserve
their peace of mind and good medical practice. Defenders of this practice
credit defensive medicine for this, since obstetricians fear so-called
“wrongful birth” lawsuits where an obstetrician is sued for failure to give the
mother a prenatal diagnosis and the chance to abort her baby. An Oregon couple
won a $3million suit for wrongful birth in 2012.
Regardless of lawsuits, women deserve the dignity of
informed consent. They need to know the risks of prenatal tests and what can be
done if their child is found to have a disability. At this time, the answer is often nothing
more than, ‘help prepare you emotionally.’ Too many doctors consider the birth
of a child with a disability like Down syndrome a failure of their patients,
due to outmoded stereotypes of life with Down syndrome. Mothers hear such unmedical predictions as,
“Your child will never tie his shoes, read, marry, go to college or be happy.” There
is a wide range of ability among those with Down syndrome, however none of
these predictions can be definitively tied to a prenatal diagnosis, and people
with Down syndrome are breaking these barriers every day thanks to advances in
inclusion and education.
Then there is the question of happiness. Some
women are given the mother guilt trip in
reverse; “you can’t do this to your other children.” There is the fear of
raising a child with Down syndrome alone in the dire warning, “your marriage
will break up.” Neither of these predictions are substantiated by research. Dr
Brian Skotko’s 2011 study in the Journal of American Medical Genetics showed
that 99% of parents who have a child with Down syndrome report being happy with
them and those with Down syndrome are no less happy. http://www.brianskotko.com/images/stories/Files/ajmg%20parent%20final%20paper.pdf
A study shows that marriages with a child with Down
syndrome actually have slightly increased longevity.
A
2008 study at Vanderbuilt
University analyzed data from the Tennessee Department of Health's birth,
hospital discharge and divorce database records from 1990 to 2002. Down
syndrome actually gave families what they termed, the “Down syndrome
advantage.”
Rates of divorce:
- Down syndrome – 7.6 percent
- No disability – 10.8 percent
- Other disabilities – 11.2 percent
http://www.sheknows.com/parenting/articles/991053/divorce-does-the-down-syndrome-advantage-exist
Mothers are seldom told of the 1% risk of
miscarriage from CVS and amnio-centesis. They are not given a realistic picture
of what raising a child with Down syndrome is really like, and sometimes it’s
hard to believe that this is not intentional. An abysmal ignorance exists in
society about day to day life with people with Down syndrome, due to a high
abortion rate of such babies diagnosed
with Down syndrome before birth (between
75-92%)
This is where an array of parents of children with
Down syndrome, have, from their computers, made an enormous difference in
educating the public by sharing their day to day lives, publishing research and
protesting negative stereotypes. These parents are making a difference in how
both Down syndrome and prenatal testing
are viewed. Even the Journal of the American Medical Association is suggesting
that women be given better counseling about prenatal testing. A study which showed
that the number of expectant moms who chose to undergo invasive testing was
halved when they had a short explanation of what testing was and what it could
show them about their baby at their stage of pregnancy.
The conclusion was that the research, “adds support to the contention that women
may not be receiving adequate counseling about their options. This underscores the
need for clinicians to be clear that prenatal testing is not appropriate for
everyone, and to present foregoing testing as a reasonable choice.”
Well done, moms, keep it up, they are listening!
