Changing Russia's View of Down's Syndrome

A teary-eyed mother describes the callous treatment she received from her doctor when she pressed him for an explanation of what was wrong with her Down's syndrome child. The doctor just screamed at her that the child had to be sent to an institution and it was not worth the trouble of carrying out tests.


Another woman recounts how her doctor, who relied only on a photograph to diagnose her son of Down's syndrome, told her he wouldn't talk or walk until he was 5 years old.


In Moscow's internaty -- state-run homes for children -- a girl who is no more than skin and bones lies behind the bars of her crib, and a disturbed boy wearing a straitjacket tries repeatedly to stand up from the bench he was tied to like a dog on a leash.


The scenes are from a new video produced by Downside Up, a nonprofit organization that seeks to improve the quality of life for children with Down's syndrome in Moscow.


The video was shown at a conference last week to a group of 100 Russian doctors, and 50 copies will be distributed to Moscow's maternity hospitals, where the initial decisions about whether or not to institutionalize Down's syndrome children are made.


Watching the video alongside the Russian doctors was Dr. Jennifer Dennis, a British pediatrician and leading specialist in genetic defects, who is visiting Moscow for two weeks to meet with Russian pediatricians and emergency room doctors.


She hopes to dispel the myths about genetic defects that prevail in Russia's medical system and to show doctors that the widespread practice in Russia of placing children in institutions is not the only alternative.


"I think you have seen from the film that parents never forget what is said to them, so as doctors we have a huge responsibility to give correct information to parents of a child with Down's syndrome," Dennis said.


The video showed real cases where doctors had gotten it wrong. Dennis said children with Down's syndrome can often walk shortly after their "normal" peers -- not always as late as age 5. With nurturing, Down's syndrome children can lead nearly normal lives; 70 percent of children with Down's syndrome can learn to read, and some of them even have an enhanced ability to read at a very young age, she said.


While some of the doctors were indignant about the video, which they said only showed Russia's worst internaty, others thought it will be a good tool to train doctors and inform parents.


"It's shameful," Vladimir Solonichenko, a geneticist at Filatov Hospital who spoke at the conference, said of the treatment of Down's syndrome children.


Solonichenko explained that about 30 years ago, a high Communist Party official had a child with Down's syndrome and handed the baby over to the state. After that, doctors increasingly advised parents to put their children in the state-run homes.


"In the '60s, the situation was that children with Down's syndrome were quite a burden for their families, and they were without hopeful plans for normal integration into society. And that was how they were brought up," he said. "Unfortunately in our country, it was thought that [inherited diseases] were incurable."


These attitudes started to change in the 1980s, and more doctors are realizing there are alternative, and more humane, methods of caring for children with Down's syndrome, Solonichenko said.


One such change is a facility called Utesheniye, which means comforting in Russian, where parents can bring their Down's syndrome children to play in a kindergarten-like atmosphere. The video showed the children dancing and playing with educational games.


Viktor Yurtaikin, a child psychologist, founded Utesheniye, which he says was Moscow's first early-intervention center for children with genetic defects when it opened in 1993.


Russian society's attitude is that those with Down's syndrome are little better than animals, he said. In one official survey published in 1992, Yurtaikin said, 20 percent of respondents thought babies with genetic defects should be killed.


These are the types of attitudes Down's syndrome advocates are trying to dispel. Claire Lyons, director of Downside Up, which, along with Action for Russia's Children, sponsored Dennis' trip, said she hopes that Dennis' talks with Russian doctors will at least train them to give parents a choice, rather than recommending institutionalization as the only solution.


"The institutional system has not yet begun to be decentralized. There's not an understanding that these kids are better off at home, and there's no understanding of what they can do," Lyons said, later adding, "It's a matter of ignorance really. We want to provide information that these kids are educable."


Lyons said she knows parents may not be financially able to care for the children themselves, but there are more and more programs being established to help them both financially and emotionally, like the Association for Children with Down's Syndrome, Action for Russia's Children and Utesheniye. There are about 110 Down's syndrome births per year in Moscow, she said.


The West isn't that far ahead of Russian when it comes to keeping Down's syndrome children out of institutions. In the 1960s, British children with the disease were placed in children's homes after birth. Yet, even where children were physically cared for, they lacked the emotional nurturing they needed to thrive, Dennis said.


Only 30 years later, England has no children's homes and 85 percent of Down's syndrome children stay with their families at birth. The remaining 15 percent are eventually adopted, she said.