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A never-ending trap

| Sunday, April 3, 2005

DELHI, India -- The little girl sits down on the dusty curb as passing buses spit fumes and auto-rickshaw drivers let loose on their horns with abandon. Her hollow, moon-shaped eyes seem almost as lifeless as her legs.

Ekta -- she doesn't know her last name and guesses she is 7 or 8 -- works this intersection with her older sister from daybreak to dusk. She sells copies of a tabloid she can't read for two rupees (about 4 cents) apiece, barely earning enough to silence the hunger that screams louder with each step.

Stricken by polio in infancy, Ekta walks by planting her bulbous right foot on the pavement, toes pointed straight downward. Then she slowly heaves her left hip forward as if dragging a corpse.

This has been Ekta's fate ever since her parents sent their daughters to the city from the neighboring state of Rajasthan because they couldn't support them on farm laborers' wages.

Survival is hard enough for street children here like Ekta. Add polio to the mix, and it's a recipe for tragedy.

Americans long ago stopped focusing on the lasting damage polio can do to a body and the terror it can ignite in a family and community.

In India -- one of just six polio-endemic countries in the world -- the disease remains a fact of life.

Polio used to cripple 200,000 Indian children annually and kill several thousand more. By last year, however, a decade-long eradication effort reduced the toll to 135 cases -- the lowest incidence in the country's history.

This progress is extraordinary in a nation where millions of impoverished children live without access to doctors and hospitals.

But wander through an open-air market in Delhi or the filthy slums on the city's outskirts and you still can't avoid coming face-to-face with polio's aftermath in its many guises.

Perhaps it will be a boy with calluses thicker than saddle leather on his knees and palms from a lifetime spent crawling. Or a young girl whose legs are so wasted she must be carried on her mother's back as they beg for their next meal.

Stories like these, like Ekta's, can be told countless times over in India.

A hopeless combination

The problem isn't just polio.

It's the combination of polio and poverty that condemns children to a lifetime of serious health problems and dependency on others, said Dr. Mathew Varghese, an orthopedic surgeon and director of St. Stephen's Hospital in the Tis Hazari section of Old Delhi.

Varghese, a workaholic who keeps toffee in his pocket and a smile on his face, first blames inadequate routine immunization.

Only 44 percent of India's 414 million children are immunized against vaccine-preventable illnesses on a routine basis, according to United Nations Children's Fund statistics. That's one reason so many here contracted polio before mass immunization campaigns against the disease began in 1995.

Subsequently, the country's welfare system failed to meet the medical needs of polio victims whose families couldn't -- or wouldn't -- care for them, Varghese said.

"These children sat on the floor for whole days, for weeks and months at a time," he said. As a result, they developed even more severe muscle deformities, faulty posture and pronounced differences between the lengths of their legs.

"What starts out as a physical problem ends up where the child is without education, and then you have a social problem that changes the life of a whole family for an entire generation," Varghese said. "The trap is never-ending."

The final push is now under way to wipe out polio and shut the door on this trap forever.

Meantime, Varghese and others are working to help those for whom the vaccine came too late.

Like Robin Hood in a white lab coat, Varghese has performed thousands of polio corrective surgeries for free at St. Stephen's in the past two decades.

He does it by overcharging wealthy patients to cover the expenses of the poor. The hospital also received a $49,000 grant this year from a local Rotary club to pay for 400 extra surgeries. That's about $125 a surgery -- the gift of autonomy for half the price of an iPod.

St. Stephen's is the oldest hospital of its kind in Delhi, founded by Anglican missionaries in the late 1800s. In this history-rich setting, Varghese and his team of 16 surgical residents work modern-day medical miracles. They lengthen growth-stunted legs, straighten twisted spines and rewire hand muscles to make useless thumbs function again.

"No matter how hard I try, I cannot reverse the paralysis," Varghese said. "So our main focus is trying to do damage control, to change the level of dependency in a child."

Eight beds are reserved at all times in a ward for polio patients. After children recover from surgery, craftsmen fit them with artificial feet, braces and crutches made in an on-site workshop. Physical therapists then teach them how to walk using these aids.

Long journey

One crisp Delhi morning in February, about 30 polio-stricken children of all ages arrive at St. Stephen's.

Some come from the nearby Akshay Pratishthan School. They are dressed in formal British uniforms with combed jet-black hair. Others come barefoot and haggard after traveling 650 miles by bus or train with their parents from Bihar, one of two Indian states where wild poliovirus still circulates.

Some are cradled in the arms of their older siblings. Still others are pushed in wheelchairs by friends who themselves hobble on crutches. One child limps into the hospital using a field hockey stick as a makeshift cane. A social worker in a tall fur hat carries in a boy almost his size on piggyback.

The doctors examine them on sheeted beds, flexing their jelly-like limbs, taking notes and conferring with nurses in starched white caps.

Parvati, 40, a sari-wrapped housewife from Bihar, has prayed for this day ever since her daughter, Anita, 15, came down with a mysterious fever as a toddler.

"She used to run and walk," says Parvati, fiddling with her metallic bangle bracelets as her eyes well with tears. "Then she had polio."

Parvati's husband is a migrant farmer who earns 30 rupees -- about 70 cents a day -- to feed his wife and three children. A gangly teenager with broad cheeks, Anita is tutored by her siblings instead of going to school because she is ashamed of her disabilities. The girl's left leg is several inches shorter than her right and her knees can bend backward like a Gumby figurine.

In the coming weeks, mother and daughter again will make the long journey from Bihar so Anita can undergo surgery that should allow her to walk with the help of crutches -- a poignant drama that plays out time and again at St. Stephen's.

And at the Hardayal Handicapped Center in the nearby city of Agra.

Miracle factory

In India, handicapped children for poor people are a curse," said O.P. Agarwal, 78, a ceramics merchant who opened the family-run Hardayal center eight years ago to provide free treatment to polio patients.

Agra is a city of almost 3 million people on the banks of the Yamuna River. It is a warren of dirt paths and open-air markets in the pearly shadow cast by the onion domes of the Taj Mahal -- the bewildering crowned jewel of the Moghul dynasty.

The Hardayal miracle factory is hidden behind an iron fence in a maze-like bazaar where modern life weaves its way through ancient Indo-Muslim customs.

Cycle rickshaws and bullock carts compete for space with motor scooters and taxis on the city's overcrowded roads. The aroma of bidi smoke, cumin, dust and cow dung mingles with the choking smell of diesel exhaust.

Doctors at the Hardayal center have treated more than 20,000 polio victims, amputees and people with other disabilities.

After an initial evaluation, the children go to a nearby hospital for surgery, and several months later, return to be fitted for prosthetic limbs and braces that empower them to walk -- all at no cost. The Agarwal family covers 80 percent of the patients' expenses -- including food, shelter and medicine -- and the remainder is fronted by Rotary and other charitable organizations.

"Like Mother Theresa taught us, you have to give charity until it hurts," said Sunil Agarwal, 48, the center's director and son of its founder. "We have a little bit more than the others, so why not?"

The Agarwals can afford to keep the clinic open for four frenzied days at the beginning of every month. In that time, about 200 polio-stricken children make pilgrimage to Agra.

They come by car, by boat, by elephant, by camel. They enter the gates in their parents' arms, but leave on their own.

Children like Arvind Yadav, 9, of the town of Firozabad less than 25 miles away in the polio-endemic state of Uttar Pradesh.

The son of poor farmers, Yadav's legs were paralyzed by polio as an infant. His mother, Bhavanshri, learned about the Hardayal clinic by word-of-mouth. Her son underwent polio corrective surgery at an Agra hospital in late February. In two months, he will walk for the first time.

"You can't just sit by when you see a child crawling," said Sunil Agarwal, whose family lives in a villa adjacent to the center. "We want them to walk on their own, to feel themselves as part of society. Many of them have tears in their eyes when they take their first steps."

But those first steps are just that.

Love, education and respect

Back in Delhi, at the Akshay Prathisthan School, teachers give polio victims more than mobility. They provide them with the education and skills they will need to lead dignified, productive lives, disability or not.

Akshay Pratishthan -- which means "inexhaustible" in Hindi -- provides free education to 200 special needs children from kindergarten through high school, many of them paralyzed to varying degrees by polio. They are integrated in the airy, brightly lit classrooms with an equal number of mainstream students. All come from low-income families.

Children here learn math, science and reading. They get lunch, textbooks and a clean uniform. They receive care from doctors, social workers, yoga instructors and occupational therapists. They learn vocations like embroidery, baking, air-conditioning repair, computing and carpentry. They move with the help of handicapped ramps and wheelchair-friendly buses -- both a rarity in India.

"If these children weren't in school, they'd spend their day at home in a small, dirty place with no toilet and no place to walk or they may have to work," Akshay principal Indira Chaudri said. "Here they get lots of love, education and respect."

Every morning, the hundreds of Akshay children line up in rows in a cement playground to chant the Indian national anthem accompanied by a deep-timbre drum.

Some shuffle with the help of braces. A few roll into place in wheelchairs. Several limp, hand on knee, much like Ekta does as she sells newspapers from her dusty curb that feels a world away.

Jaya he, jaya he, jaya he, the children sing. The saving of all people waits in thy hand -- victory, victory, victory to thee

A handful of these children are awaiting surgery at St. Stephen's. For some, no procedure can repair their wounds.

Regardless, all of them have more than Ekta and the millions of unwanted and forgotten children like her.

They have hope.

And that is probably enough.

Additional Information:

View a narrated slide show

A Multimedia Presentation: An Unfinished Miracle

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