Just Kids
Disabled babies face a life worse than death
By Sarah Larson, Dispatch/Argus Staff writer
FRIAZINO, Russia -- Two-year-old Andrei lies on his side dying.
Two-year-old Andrei spends every day lying in a crib at a home for abandoned babies in Friazino, Russia, waiting to die. Andrei suffers from untreated hydrocephalus, a buildup of fluid in the brain that causes severe brain damage. Most children born with the condition die before age 4. Andrei still responds to touch, curling his fingers around Dispatch/Argus reporter Sarah Larson's finger. His eyes jerk as he tries to focus on her face.
It may happen next week, or next month, or next year, but death almost certainly will come.
Andrei has hydrocephalus, also called water on the brain. Excessive cerebrospinal fluid builds up in the brain, exerting crippling pressure which causes severe brain damage. Most children born with the condition who go untreated die before age 4, according to the San Francisco-based Hydrocephalus Association.
Andrei was born with hydrocephalus. By the time he was brought to the Friazino Baby House at 3 months, it already was too late for surgery, according to head doctor Tamara Alendroma.
The boy's grandmother visits when she can, sitting by his crib stroking his hand. Andrei spends all day lying on his side, naked from the waist down. A nurse occasionally turns him from side to side and changes the sheets under his withered body.
Andrei had other visitors one day in February. Nancy Edlund and Brent Garbett, of Moline, stopped by to rub his back, smooth a hand over his enlarged head and talk to him.
``All I could think was, there is no need for this baby to be suffering this way,'' Mrs. Edlund would say later, as tears slid down her cheeks. ``There are medical treatments to drain the fluid. There is no need for him to be this uncomfortable.''
Just upstairs from Andrei, another little boy with hydrocephalus was laughing over a stuffed frog a Quad-Cities volunteer had given him. Sergei is now a normal, healthy 4-year-old boy. A ragged scar over his right eye is the only outward sign of his nearly fatal ordeal.
Sergei's parents threw him under a passing train when he was an infant.
He survived, but suffered a terrible head injury which caused hydrocephalus. Doctors surgically inserted a tube to drain the fluid from his head to his abdomen. Sergei must have the tube extended as he grows. ``We hope all will go well, and he can have the surgery,'' Dr. Alendroma said.
--
Such are the stories of the Friazino Baby House.
Faded white paint flakes off the window casements of the two-story beige brick building in a suburb of Moscow. Inside live 105 children under the age of 5. Most are mentally or physically disabled and were abandoned because of their disabilities.
Some, like Andrei, have fatal conditions, but the majority could live decent lives if given the chance. Elena, 5, has Down syndrome. Katya, 3 months, has a back problem and probably will not be able to move much, the staff said. Other babies have conditions like autism, cerebral palsy or gastrointestinal disorders.
Many, though, are perfectly healthy but for a small physical defect. Dr. Alendroma picked up Igor, a 1-year-old boy with gorgeous brown eyes, and said, ``He's the nicest kid, but he has a crippled arm.'' She lifted his right arm to show where it ended in two misshapen finger-like clubs. Igor's mother didn't want him because of his deformity.
Other children have similar stories. Katya, with the back problem, was left on the center's front steps one night. She is lucky compared to others.
``Some of these babies were just thrown away, even to the garbage dumps,'' Dr. Alendroma said through a translator. ``Sometimes, they are just put somewhere.''
To understand how this could happen in a country so proud of its treatment of children, one must understand the legacy of a nation built on lies. Soviet propaganda created the ideal image of men and women with strength, beauty and grace. Those with mental or physical disabilities were essentially non-people. Having a disabled child was a disgrace, much as it was not so long ago in the United States.
Rights of the Child, the leading Moscow children's rights advocacy group, contends professionals who should be advancing science over superstition perpetuate the warehousing of disabled children away from public view. Doctors and social workers routinely pressure parents to hand disabled children over to state institutions, said Rights of Child director Boris Altshuler.
``The Soviet-inherited system of totally isolating disabled children from society is flourishing in present-day Russia,'' Mr. Altshuler said. ``The traditional Russian priority of state internat (boarding school) care over family care of disabled children would be a shame for any civilized state.''
Rights of the Child alleges the system flourishes because government workers want to keep their jobs. They keep institutions full of children by paying parents paltry child support, pressuring them to give up disabled children and misdiagnosing mental retardation.
Tatiana is a warm-hearted woman who works with hospitals, baby houses and internats to improve the lives of children other parents have discarded. She arranged for Quad-Cities volunteers and journalists to visit the Friazino Baby House.
Tatiana chose to raise her mildly retarded child at home, even though she knew it would be a financial and emotional struggle. Her 255-ruble ($11) monthly government child support once was enough to buy clothes and food, she said. After the August devaluation of the ruble, it is now practically worthless in expensive Moscow.
If Tatiana had given her child to a government institution, the budget allocation would have been 2,500 rubles ($109), she said. Institutions receive 1,800 to 2,500 rubles ($78 to $109) per child per month, eight times more than parents, Mr. Altshuler said.
``To change the dramatic financial inequality of family care and institutional care of disabled children would be the main remedy,'' for inhumane state-run centers, he said. ``But to reach this goal is not simple because of the financial interest of bureaucrats to have their money.''
Most parents have no choice but to give up their disabled children, Mr. Altshuler said, calling it ``one of the most tragic facets of Russian reality.'' With so little financial support, home care is out of reach for most parents. One parent must give up a job to care for the child -- an impossibility in Russia's current economic crisis.
Parents also do not receive sufficient medical, psychological or pedagogical assistance to care for their children at home, he said. Frustrated at the lack of assistance, Tatiana started the Friazino Association of Parents of Invalids nine years ago to give emotional support to parents in her situation. The group now has 10 members.
--
Tatiana has seen all kinds of institutions for disabled children, and she knows the Friazino Baby House is one of the best. Sunlight streams in windows, lush green plants decorate the rooms, colorful quilts cover the beds and Western groups have donated lots of toys and equipment. More importantly, ``the right people with the right hearts'' work there, she said.
But even the best institutions are short on money and staff, which can easily lead to neglect, as Brent Garbett and Dispatch and Rock Island Argus photographer Terry Herbig found.
When Mr. Garbett first spied 4-year-old Igor, the boy was sitting alone on a wooden bench in his classroom, rocking back and forth.
Four-year-old Igor sits alone, rocking back and forth. It is common for children who are not receiving enough sensory stimulation to resort to rocking to stimulate themselves. The head doctor at his orphanage said he has an IQ near zero and responds only to himself, but Quad-Cities volunteers were able to get the boy to smile and laugh. His next home will be a mental facility for children with disabilities. Russian human rights advocates have called such institutions ``death camps.''
``He seemed really shy, so I thought I'd warm up to him,'' Mr. Garbett said. ``He actually responded to me. I'd tickle him and he'd laugh. He seemed very nervous, almost terrified at times that I was there. Then he was laughing and seemed like he wanted to play more.''
Igor wet himself when Mr. Garbett picked him up. He had on no diaper, only some cloth wound around his midsection. A worker removed the wet cloth and wound another length around the boy. Russian orphanages do not use disposable diapers because they are too expensive.
Igor wet himself again 10 minutes later. Photographer Terry Herbig spotted the boy sitting in a puddle of urine and went to find a nurse. By the time she got to him a minute later, Igor had smeared his urine around the wooden bench with his right hand and then licked his fingers.
The worker removed the wet cloth and wound another length around him. He stayed in the same soggy, urine-soaked pants for the rest of the day.
Dr. Alendroma said Igor has rocked ever since he came to the baby house two years ago. The staff tried to break him of the habit, she said, but it made him cry, so they left him alone. He rocks harder when unexpected things happen, like visits from strangers, she said.
Igor is ``locked within himself'' and does not communicate with anyone, Dr. Alendroma said. His mother is a mental patient, she said, and he did not start walking until age 3.
``His brain is damaged, and his IQ is very close to even zero,'' she said. ``This rocking is one of the sure signs of this disorder. He has mental problems and will go to a house for invalids.''
--
That decision could literally be a death sentence for the little boy with big brown eyes.
Conditions in the Ministry of Health's baby houses have greatly improved over the last few years, thanks in part to contact with Western adoption agencies. However, the Ministry of Labor and Social Development runs internats for older disabled children. They have little contact with Russian or Western groups, because few people are interested in adopting the children, Mr. Altshuler said.
Rights of the Child, and New York-based Human Rights Watch, have completed scathing reports of inhumane treatment and conditions at these internats. Both organizations have documented children being drugged, tied to furniture, beaten and forced to lie in bed all day, every day.
``These institutions are a sort of death camp where children are just stored without any real care,'' Mr. Altshuler said. ``Such institutions should not exist in the civilized country at the end of the 20th Century.''
The groups say children receive no real schooling because they are considered uneducable, and inadequate medical treatment results in high death rates. Rights of the Child alleges the death rate in psychoneurological internats is much higher than that of children with similar health problems in the Ministry of Health's baby houses.
One of the biggest criticisms of these internats is misdiagnosis. The most criticized policy is a test given by the state-run Psychological-Medical-Pedagogical Commission, according to a December 1998 Human Rights Watch report, ``Cruelty and Neglect in Russian Orphanages.''
At age 4, children go before this panel of psychologists, doctors and goverment officials. The adults ask the child questions and assign an intelligence level based to the answers.
Children's advocacy groups criticize the test for the brevity of the exam, the intimidation of a group of strangers, the inappropriateness of the questions, the lack of independent monitoring and the permanency of the final ruling.
``It is impossible to overstate the crucial importance of this test to an orphan's future,'' the Human Rights Watch report says. ``It is a crossroads which routes the child either to a life of limited opportunities or to a life of doom.''
Different studies concluded 30 to 60 percent of children labeled mentally deficient actually had average or better mental ability, according to Human Rights Watch. Shy, frightened or confused 4-year-olds, or those with only a cleft palate or club feet, may be labeled retarded and sent to an internat for life.
The commission acts with no independent monitoring, a fact which Mr. Altshuler says allows it to ``easily bury alive . . . many children who do not deserve this dreadful fate.''
Once a child is labeled mentally deficient, the label stays with it forever. There is no practical process of appeal, and public schools will not accept such children.
--
Many children at the Friazino Baby House are headed for such institutions, a fact the Quad-Cities visitors could hardly bear.
Roger Johnson, of Fulton, and Mrs. Edlund peeked into one crib to find 18-month-old Katya repeatedly bouncing her right leg and spitting. She has Down Syndrome. Mrs. Edlund leaned over to stroke the little girl's face.
``It's so hard when you know what they need and you know they're not getting it,'' she said as she left the room, dabbing a tissue at the tears on her cheeks. ``I know from personal experience that so much can be done for Down babies, but it takes early, early, immediate intervention.''
The state has no expectations for children like Katya. There are no special schools or tutors. A Moscow support group works with parents of children with Down Syndrome, but there is no group for abandoned children.
Even workers who like the children often can do little. They have no time to give each child the intensive interaction they need to develop to their full potential.
Many ``teachers'' are little more than aides, Mr. Altshuler said, with no training for working with disabled children. Salaries begin at 350 rubles ($15) and rise to 500 ($22) per month with experience, not enough to draw the most talented, caring professionals.
``There are many very good and very kind people and teachers in Russia,'' Mr. Altshuler said. ``But those who possess power are very often opposite personalities. Russia's death is the total unaccountability of its bureaucracy, which is by no means patriotic, but only selfish and robbing. This absence of responsibility is the answer to many Russian enigmas.''
By Sarah Larson, Dispatch/Argus Staff writer
FRIAZINO, Russia -- Two-year-old Andrei lies on his side dying.
Two-year-old Andrei spends every day lying in a crib at a home for abandoned babies in Friazino, Russia, waiting to die. Andrei suffers from untreated hydrocephalus, a buildup of fluid in the brain that causes severe brain damage. Most children born with the condition die before age 4. Andrei still responds to touch, curling his fingers around Dispatch/Argus reporter Sarah Larson's finger. His eyes jerk as he tries to focus on her face.
It may happen next week, or next month, or next year, but death almost certainly will come.
Andrei has hydrocephalus, also called water on the brain. Excessive cerebrospinal fluid builds up in the brain, exerting crippling pressure which causes severe brain damage. Most children born with the condition who go untreated die before age 4, according to the San Francisco-based Hydrocephalus Association.
Andrei was born with hydrocephalus. By the time he was brought to the Friazino Baby House at 3 months, it already was too late for surgery, according to head doctor Tamara Alendroma.
The boy's grandmother visits when she can, sitting by his crib stroking his hand. Andrei spends all day lying on his side, naked from the waist down. A nurse occasionally turns him from side to side and changes the sheets under his withered body.
Andrei had other visitors one day in February. Nancy Edlund and Brent Garbett, of Moline, stopped by to rub his back, smooth a hand over his enlarged head and talk to him.
``All I could think was, there is no need for this baby to be suffering this way,'' Mrs. Edlund would say later, as tears slid down her cheeks. ``There are medical treatments to drain the fluid. There is no need for him to be this uncomfortable.''
Just upstairs from Andrei, another little boy with hydrocephalus was laughing over a stuffed frog a Quad-Cities volunteer had given him. Sergei is now a normal, healthy 4-year-old boy. A ragged scar over his right eye is the only outward sign of his nearly fatal ordeal.
Sergei's parents threw him under a passing train when he was an infant.
He survived, but suffered a terrible head injury which caused hydrocephalus. Doctors surgically inserted a tube to drain the fluid from his head to his abdomen. Sergei must have the tube extended as he grows. ``We hope all will go well, and he can have the surgery,'' Dr. Alendroma said.
--
Such are the stories of the Friazino Baby House.
Faded white paint flakes off the window casements of the two-story beige brick building in a suburb of Moscow. Inside live 105 children under the age of 5. Most are mentally or physically disabled and were abandoned because of their disabilities.
Some, like Andrei, have fatal conditions, but the majority could live decent lives if given the chance. Elena, 5, has Down syndrome. Katya, 3 months, has a back problem and probably will not be able to move much, the staff said. Other babies have conditions like autism, cerebral palsy or gastrointestinal disorders.
Many, though, are perfectly healthy but for a small physical defect. Dr. Alendroma picked up Igor, a 1-year-old boy with gorgeous brown eyes, and said, ``He's the nicest kid, but he has a crippled arm.'' She lifted his right arm to show where it ended in two misshapen finger-like clubs. Igor's mother didn't want him because of his deformity.
Other children have similar stories. Katya, with the back problem, was left on the center's front steps one night. She is lucky compared to others.
``Some of these babies were just thrown away, even to the garbage dumps,'' Dr. Alendroma said through a translator. ``Sometimes, they are just put somewhere.''
To understand how this could happen in a country so proud of its treatment of children, one must understand the legacy of a nation built on lies. Soviet propaganda created the ideal image of men and women with strength, beauty and grace. Those with mental or physical disabilities were essentially non-people. Having a disabled child was a disgrace, much as it was not so long ago in the United States.
Rights of the Child, the leading Moscow children's rights advocacy group, contends professionals who should be advancing science over superstition perpetuate the warehousing of disabled children away from public view. Doctors and social workers routinely pressure parents to hand disabled children over to state institutions, said Rights of Child director Boris Altshuler.
``The Soviet-inherited system of totally isolating disabled children from society is flourishing in present-day Russia,'' Mr. Altshuler said. ``The traditional Russian priority of state internat (boarding school) care over family care of disabled children would be a shame for any civilized state.''
Rights of the Child alleges the system flourishes because government workers want to keep their jobs. They keep institutions full of children by paying parents paltry child support, pressuring them to give up disabled children and misdiagnosing mental retardation.
Tatiana is a warm-hearted woman who works with hospitals, baby houses and internats to improve the lives of children other parents have discarded. She arranged for Quad-Cities volunteers and journalists to visit the Friazino Baby House.
Tatiana chose to raise her mildly retarded child at home, even though she knew it would be a financial and emotional struggle. Her 255-ruble ($11) monthly government child support once was enough to buy clothes and food, she said. After the August devaluation of the ruble, it is now practically worthless in expensive Moscow.
If Tatiana had given her child to a government institution, the budget allocation would have been 2,500 rubles ($109), she said. Institutions receive 1,800 to 2,500 rubles ($78 to $109) per child per month, eight times more than parents, Mr. Altshuler said.
``To change the dramatic financial inequality of family care and institutional care of disabled children would be the main remedy,'' for inhumane state-run centers, he said. ``But to reach this goal is not simple because of the financial interest of bureaucrats to have their money.''
Most parents have no choice but to give up their disabled children, Mr. Altshuler said, calling it ``one of the most tragic facets of Russian reality.'' With so little financial support, home care is out of reach for most parents. One parent must give up a job to care for the child -- an impossibility in Russia's current economic crisis.
Parents also do not receive sufficient medical, psychological or pedagogical assistance to care for their children at home, he said. Frustrated at the lack of assistance, Tatiana started the Friazino Association of Parents of Invalids nine years ago to give emotional support to parents in her situation. The group now has 10 members.
--
Tatiana has seen all kinds of institutions for disabled children, and she knows the Friazino Baby House is one of the best. Sunlight streams in windows, lush green plants decorate the rooms, colorful quilts cover the beds and Western groups have donated lots of toys and equipment. More importantly, ``the right people with the right hearts'' work there, she said.
But even the best institutions are short on money and staff, which can easily lead to neglect, as Brent Garbett and Dispatch and Rock Island Argus photographer Terry Herbig found.
When Mr. Garbett first spied 4-year-old Igor, the boy was sitting alone on a wooden bench in his classroom, rocking back and forth.
Four-year-old Igor sits alone, rocking back and forth. It is common for children who are not receiving enough sensory stimulation to resort to rocking to stimulate themselves. The head doctor at his orphanage said he has an IQ near zero and responds only to himself, but Quad-Cities volunteers were able to get the boy to smile and laugh. His next home will be a mental facility for children with disabilities. Russian human rights advocates have called such institutions ``death camps.''
``He seemed really shy, so I thought I'd warm up to him,'' Mr. Garbett said. ``He actually responded to me. I'd tickle him and he'd laugh. He seemed very nervous, almost terrified at times that I was there. Then he was laughing and seemed like he wanted to play more.''
Igor wet himself when Mr. Garbett picked him up. He had on no diaper, only some cloth wound around his midsection. A worker removed the wet cloth and wound another length around the boy. Russian orphanages do not use disposable diapers because they are too expensive.
Igor wet himself again 10 minutes later. Photographer Terry Herbig spotted the boy sitting in a puddle of urine and went to find a nurse. By the time she got to him a minute later, Igor had smeared his urine around the wooden bench with his right hand and then licked his fingers.
The worker removed the wet cloth and wound another length around him. He stayed in the same soggy, urine-soaked pants for the rest of the day.
Dr. Alendroma said Igor has rocked ever since he came to the baby house two years ago. The staff tried to break him of the habit, she said, but it made him cry, so they left him alone. He rocks harder when unexpected things happen, like visits from strangers, she said.
Igor is ``locked within himself'' and does not communicate with anyone, Dr. Alendroma said. His mother is a mental patient, she said, and he did not start walking until age 3.
``His brain is damaged, and his IQ is very close to even zero,'' she said. ``This rocking is one of the sure signs of this disorder. He has mental problems and will go to a house for invalids.''
--
That decision could literally be a death sentence for the little boy with big brown eyes.
Conditions in the Ministry of Health's baby houses have greatly improved over the last few years, thanks in part to contact with Western adoption agencies. However, the Ministry of Labor and Social Development runs internats for older disabled children. They have little contact with Russian or Western groups, because few people are interested in adopting the children, Mr. Altshuler said.
Rights of the Child, and New York-based Human Rights Watch, have completed scathing reports of inhumane treatment and conditions at these internats. Both organizations have documented children being drugged, tied to furniture, beaten and forced to lie in bed all day, every day.
``These institutions are a sort of death camp where children are just stored without any real care,'' Mr. Altshuler said. ``Such institutions should not exist in the civilized country at the end of the 20th Century.''
The groups say children receive no real schooling because they are considered uneducable, and inadequate medical treatment results in high death rates. Rights of the Child alleges the death rate in psychoneurological internats is much higher than that of children with similar health problems in the Ministry of Health's baby houses.
One of the biggest criticisms of these internats is misdiagnosis. The most criticized policy is a test given by the state-run Psychological-Medical-Pedagogical Commission, according to a December 1998 Human Rights Watch report, ``Cruelty and Neglect in Russian Orphanages.''
At age 4, children go before this panel of psychologists, doctors and goverment officials. The adults ask the child questions and assign an intelligence level based to the answers.
Children's advocacy groups criticize the test for the brevity of the exam, the intimidation of a group of strangers, the inappropriateness of the questions, the lack of independent monitoring and the permanency of the final ruling.
``It is impossible to overstate the crucial importance of this test to an orphan's future,'' the Human Rights Watch report says. ``It is a crossroads which routes the child either to a life of limited opportunities or to a life of doom.''
Different studies concluded 30 to 60 percent of children labeled mentally deficient actually had average or better mental ability, according to Human Rights Watch. Shy, frightened or confused 4-year-olds, or those with only a cleft palate or club feet, may be labeled retarded and sent to an internat for life.
The commission acts with no independent monitoring, a fact which Mr. Altshuler says allows it to ``easily bury alive . . . many children who do not deserve this dreadful fate.''
Once a child is labeled mentally deficient, the label stays with it forever. There is no practical process of appeal, and public schools will not accept such children.
--
Many children at the Friazino Baby House are headed for such institutions, a fact the Quad-Cities visitors could hardly bear.
Roger Johnson, of Fulton, and Mrs. Edlund peeked into one crib to find 18-month-old Katya repeatedly bouncing her right leg and spitting. She has Down Syndrome. Mrs. Edlund leaned over to stroke the little girl's face.
``It's so hard when you know what they need and you know they're not getting it,'' she said as she left the room, dabbing a tissue at the tears on her cheeks. ``I know from personal experience that so much can be done for Down babies, but it takes early, early, immediate intervention.''
The state has no expectations for children like Katya. There are no special schools or tutors. A Moscow support group works with parents of children with Down Syndrome, but there is no group for abandoned children.
Even workers who like the children often can do little. They have no time to give each child the intensive interaction they need to develop to their full potential.
Many ``teachers'' are little more than aides, Mr. Altshuler said, with no training for working with disabled children. Salaries begin at 350 rubles ($15) and rise to 500 ($22) per month with experience, not enough to draw the most talented, caring professionals.
``There are many very good and very kind people and teachers in Russia,'' Mr. Altshuler said. ``But those who possess power are very often opposite personalities. Russia's death is the total unaccountability of its bureaucracy, which is by no means patriotic, but only selfish and robbing. This absence of responsibility is the answer to many Russian enigmas.''