Dating sites are very popular these days. You fill
out a profile and find your ideal mate for life. Naturally, most profiles are a
bit flattering, “energetic, attractive man who loves candlelit dinners and
walks on the beach. . . .” Imagine a profile with no photo and the following
description: I have mental delays and physical challenges including; heart
defects, low muscle tone, hearing loss, visual impairment, spinal instability,
increased tendency towards obesity and leukemia, shorter lifespan and limited
prospects for happiness.
Most people would avoid this poor individual like
the plague. Yet that is precisely the description given to women expecting a
baby with Down syndrome. Nothing positive, only a laundry list of possible defects.
The perfect baby she has been dreaming of has been reduced to a nightmare of
neediness. No wonder from 75 to 92% of pregnant women receiving a pre-natal
diagnosis of Down syndrome chose to abort their baby. In one fourth of doctors’
offices, it is the doctor who holds up this list as an attorney citing evidence
stating “This life is not worth living.”
The mother of the unborn baby with Down syndrome is
often under relentless pressure from her spouse, relatives and even her own conscience as it is suggested “Think of
your other children, what would having a baby like that do to them?” Who is speaking for the silent child at this
point? As prenatal screening is performed earlier than ever, before the mother
has developed a relationship with the baby in the womb, she has no idea how to
counter the onslaught of bad news and, too often, has little knowledge of the
positive aspects of raising a child with Down syndrome.
That’s where advocacy groups are filling the gap. From
diagnosis to adulthood, those who are blessed to know people with Down syndrome
are flooding the media with joyful images of fulfilling lives lived with an
extra chromosome. My group, KIDS Keep Infants with Down Syndrome, has marched
in the March for Life since 2009 to call attention to the joy of life with
someone with Down syndrome. When we started, we were considered a novelty, but now
I am happy to say, Down syndrome is quickly becoming cool. Target, and Nordstrom’s feature ads with
models with Down syndrome and a Spanish bathing suit designer chose an adorable
baby with Down syndrome as her model. Award winning films like “Produce” about
a man with Down syndrome whose work has become an inspiration, are available on
the Internet. A TV reality show based on Tim’s Place, an Albuquerque restaurant
where hugs are on the menu is coming next season.
Science is contributing to the wave of positive news
about Down syndrome with six promising clinical trials of medicine to help
ameliorate cognitive delays and suggestions on how the diagnosis of Down
syndrome can be made in a more patient friendly manner. After all, there are
two patients involved! A 2011 survey of families who include someone with Down
syndrome by Dr. Brian Skotko provides insight into day to day life; ninety-nine
percent of parents were happy with their child with Down syndrome and those
with Down syndrome reported an equal amount of happiness with their lives. Ninety
seven percent of siblings reported that they had become better people thanks to
their sibling with Down syndrome.
I know this to be true as our entire family has
become more compassionate, more giving, and more able to stop and smell the
roses since our youngest daughter Christina was born with Down syndrome in
2002. Now we just want to help the world to see as my friend Eileen Haupt, the
co-founder of KIDS says, ”Doctors can tell you about the challenges which come
with a child with Down syndrome but they can’t tell you about the love they
bring.”
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