Attitude to Down Syndrome Goes Downside Up
By., Annabel McGilvray
Special to the
Helen Bystrova knew something was wrong as soon as her
third baby was born. But she was told nothing until a delegation of medical
personnel came to her bedside 12 hours later.
"Your baby will never walk, she will never
talk," she was told. "Your baby has Down syndrome and will be an
idiot."
Bystrova was instructed by staff at the
"They said I was not to even start feeding my
Mary," Bystrova said in an interview. "But I did on the sly."
Like most Russians, Helen Bystrova and her husband,
Alexander, knew next to nothing about Down syndrome ‑‑ a condition,
long‑stigmatised in
The couple said they felt they had little choice but to
sign the papers they were given. So, as still happens to a reported 90 percent
of Russian babies born with Down syndrome, Mary was left at the hospital where
the staff were to arrange for her ‑‑ not expected to be lengthy ‑‑
lifelong care in a series of institutions. An estimated 50 percent of these
children committed to institutions die before they are 12 months old.
Against the medical advice they were given, they
continued to visit Mary in the detsky dom, where she
lay in a crib not moving or showing any development.
However, one day, in a search for more details about the
condition, Alexander came across a listing for Russia's Down Syndrome
Association on the Internet, He quickly gathered more information, learning it
was unnecessary for Mary to be in professional care and that in the West
children affected by Down syndrome learn to walk and talk at the same time as
other children. He also found a group called Downside Up, which provides
education and support in
Mary is now a student at Downside Up. She is an active 4‑year‑old
full of endless chatter, a vastly different child to the listless I‑year‑old
weighing 6 kilograms that the Bystrova brought home from the institution.
Although statistics remain dismaying for the one in
every 700 children born with Down syndrome in Russia, Mary is a manifestation
of the progress that is gradually occurring in the care and attention paid to
these children.
The six‑year‑old British‑registered
and Russian‑based charity Downside Up is at the forefront of a drive to
improve the attitude and education of the public, government institutions and,
most importantly, the medical profession regarding the condition.
"There is still a lot of prejudice toward Down
syndrome," said Suzette de Boer, program director at Downside Up's early
intervention centre in south central
"They are very enthusiastic," de Boer said.
"And that's where the decision is made at the maternity hospitals. It is
very important they have the best information. What doctors learn in their
studies is that children with Down syndrome are uneducable and that is what
they say to parents. Our intention by giving them this information is to
prevent what leads to a social orphan hood. "
De Boer said she is also encouraged by tentative
government plans to introduce a nation-wide early intervention program.
But for the moment, at the charity's
One hundred children regularly attend with a further 30
visiting when possible from the regions. Each year about 10 children graduate
to regular pre‑schools and kindergartens. Long distance programs are run
for those further from the capital.
Both the children and their parents are shown the
possibilities and potential for a full life within the community.
As part of that effort, last week the group brought out
the British dance group Larondina, which comprises young adults aged 14‑25
who have Down syndrome.
At the event, an initial clap quickly gave way to wild
cheers and whistles from an audience of hundreds of local care givers and those
affected by the condition lapping up the dancers' rock and roll skill, their
enthusiasm and the hope for the future they offered.
I admired their professionalism," said Helen
Bystrova. A former gymnast, she now hopes to be able to begin dance classes
with the children at Downside Up.
Unfortunately, Mary didn't attend the performance. The run-around
4‑year‑old just wouldn't have been able to sit still long enough,
said Bystrova, smiling.
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