Born to die

Lily stares at everything, without blinking for minutes together
Like all other babies, she let out a howl the minute she slipped out of her mother's womb. She looked around, her eyes full of wonder. So this was the strange world she was supposed to live in.

Everything was unfamiliar, even the woman who writhed and moaned next to her. Instinctively, Krishnaveni knew this was her mother...

A year later, little Krishnaveni knew there was something seriously wrong with her world -- a world filled with images of her HIV-positive mother suffering in pain. And then, one day, everything collapsed. Her mother died. Just like that. Leaving her one-year-old at the mercy of relatives.

An uncle took Krishnaveni under his wing for a while, but soon found the frail, unhealthy child a bothersome burden. He abandoned her, but did her the favour of dropping her at an orphanage. Krishnaveni's struggle to live had just begun.

It was as if the little girl knew she had been abandoned. But her survival instinct was strong. And she kept going with a whim that surprised everyone around her. She fought silently against all kinds of pain and disease. Against being labelled an untouchable at the orphanage because her mother carried the AIDS virus.

Then, when she was four-and-a-half years old, Krishnaveni was discovered to be HIV positive. She was also suffering from multiple abscesses all over her body. The orphanage abandoned her at the Children's Hospital, Egmore, Madras.

The ayahs (women employed to look after the children) at the hospital were no better than the orphanage employees. The fear of contracting the infection kept them miles away from the AIDS-infected baby. In order 'escape' from her, they regularly absented themselves from duty.

Vidyakar in his 'special' nursery

Krishnaveni and Ravi today

It was an tremendous struggle, one that Krishnaveni's weak body was almost ready to abandon. Until, Dr P Manorama, then a pediatric gastroenterologist at CH, walked into her life. "When she first came here," the doctor recalls, "Krishnaveni behaved more like an animal. She used to stand and defecate. She had no bladder control. If somebody called her, she would urinate immediately. She was highly insecure and emotionally disturbed."

In another hospital cot, two-and-half year old Ravi was also subject to this assiduous neglect. His ears bled so heavily that everyone at the hospital was scared to touch the child for fear of being infected.

Today, if both Ravi and Krishnaveni have survived, it is only because Dr Manorama transferred them to her private hospital. And started the CHEC Ashram where AIDS babies and AIDS orphans, once they regained their health, would live in an atmosphere surrounded by love and care.

The healthy mixture of love and medicine helped.

Ravi, who was initially silent and withdrawn, soon started talking. "Initially," recalls Dr Manorama, "we though he was deaf and dumb like his mother, a homeless woman who roamed around on the streets. It is possible that Ravi is the product of a gang rape."

Today, both Krishnaveni and Ravi have been legally adopted by her.

For the children, their new life had just begun. Dr Manorama, though, was about to acquire a new world view. She discovered that no one was willing to take up a job at her ashram. Eventually, she was forced to employ HIV positive sex workers. It did not prove to be a workable solution.

HIV positive women at Udavum Karangal The women, long addicted to a life of sex, alcohol and paan (a concoction of betel leaves, crushed betel nuts and lime), found the ashram's atmosphere stifling. "They would run away and my children, who loved them as they would their own mother, were traumatised. So we decided to stop employing sex workers." Running an orphanage for AIDS victims, Dr Manorama realised, was no easy task.

Vidyakar, on the other hand, strode an easier path. Udavum Karangal, his now-famous home for the destitute, has not yet been branded an AIDS institution. This, despite the fact that a majority of the destitutes he picks up are HIV positive; the pregnant ones have even delivered HIV positive babies.

Take the case of the pregnant sex worker who came to Madras in 1989 to deliver her HIV positive baby. She abandoned her baby to return to Bombay where she continued to work till her death. Her child passed away within a month.

Under normal circumstances, AIDS-affected mothers do not abandon their babies. But it is a different story when the women are destitute, homeless or sex workers. In other cases, especially where the family is very poor, doctors themselves recommend institutionalisation so that the HIV positive children can have proper care, food and medicine.

But the lack of specialised institutions in India sees many of these children die painful and ignominious deaths. This, despite the fact that medical studies conducted in the West have proved that the average lifespan of an HIV positive child is only 10 years.

And, in this "average lifespan", there are a few simple pleasures these children would like to cherish. "Aunty, I want to go school. I have studied upto the fourth standard. I love school. I want to study a lot and work in a store. Will you please help me?" a wide-eyed little thing at the CHES ashram looked at me hopefully.

Vidyakar with mentally retarded at Udavum Karangal
Muthupandiyan with children at the CHES ashram Vinod (also HIV positive) too wanted to go to school, "What's school like? I've never been to one. But I want to study a lot. When I get a job, I want to buy food for my mother." A mother he remembers only vaguely. A mother who is an HIV positive sex worker. A mother who found her son a hindrance to her profession and abandoned him. A mother who returned to Bombay alone.

I look back mutely. How do you offer that assurance of education in a country where AIDS is considered worse than untouchability? And never mind that primary education is the constitutional right of every child born in the country of India.

If I was helpless, Dr Manorama was not. She struggled to get her wards admitted to schools. Only to have their doors slammed on her face. No school wanted enroll a student who was HIV positive. Or who lived in a home for AIDS patients. "I can fight this kind of thing," she says frankly. "But we cannot be with the child 365 days in a year. I would not be surprised if some teachers made my children sit within a ring of DDT powder."

Vijaya Kumar does not know he is discriminated against, not yet. He has been branded an AIDS victim, something that has not been confirmed as yet. He looks healthy enough and has come to the CHES ashram barely two months ago. His father, a truck driver struck with AIDS, had abandoned the child there because he found it difficult to look after him. His mother, tired of his father's constant ill-health, had run away from home.

When it comes to the contentious topic of testing children of AIDS patients, different views prevail. Dr Manorama is dead against any such test. "Why do you want to test them and brand them as AIDS affected children? Why can't you just treat what they are suffering from? You know the stigma attached to AIDS patients in our country. Even though we tell people that our home is for only HIV positive children, the AIDS patients keep requesting us to keep their HIV negative children too."

Vidyakar, on the other hand, would prefer it if all his inmates, including infants, were tested for the HIV virus. "I don't think there is anything wrong conducting this test. Of course, we should keep the results secret. But I feel tests are absolutely necessary; it helps us to give them proper care. We make sure that we do not discriminate against anyone. We have thousands of other inmates in our home, we have to think of their safety too."

In a room at Udavum Karangal, the 10 infants dressed in white are oblivious of the fact that those who look after them are just ayahs. They don't yet realise that they are orphans; that their fathers don't acknowledge their existence and their mothers have died of an incurable disease for which the world has not yet found a cure.

Spastu, an HIV positive girl
Dr P Manorama Their lives depend on the test that will be conducted on them once they are 18 months old. It will determine their lifespan -- and whether they will live a long life with an untouchability tag around their necks or a short one full of pain and suffering.

Unaware of the cruel future that awaits them, these infants chuckle and laugh, weep and cry just like any other children of their age. Meena gurgles and smiles, showing her toothless gums. Lily stares at us, without batting her huge eyes for minutes together. Sindhu wants to be rocked all the time.

In another room, a spastic little girl was groaning in pain. She does not even know that she has reached the last stage of her life. Lakshmi, too, holds on to life with a tenuous thread. She was pregnant when she was picked up from the streets by Vidyakar and gave birth to an HIV positive baby. The child was less than a year old when it died. Since then, Lakshmi has withdrawn into a shell; she does not talk or react in any manner.

Caring for the inmates is an daunting task, compounded by its own special set of problems. Dr Manorama, for example, offered free treatment to AIDS patients and sex workers and promptly lost her other patients. They did not want to be branded as suffering from AIDS.

Muthupandiyan, the clinic's public relations office, says, "We took care of ashram with the money we got from the clinic. Now..." They get calls at night, soliciting for girls. And have to cope with men brazenly walking in and asking for women.

Some of the volunteers of the ashram have even lost their jobs because of their association with AIDS victims. Sridharan, an ashram PRO, was earlier a catering contractor for marriages. "It was purely by chance that I came to know about this ashram. I became very attached to both Krishnaveni and Ravi. My photographs with them even appeared in the local weekly. And, the very next day, I lost two contracts. Those parties did not want to have anything to do with a man who kept AIDS children on his lap. Those photographs ended my contract business."

What society seems to forget is that children born to HIV positive mothers have only a 30 per cent chance of getting the virus themselves. And yet, the innocent are punished for no fault of their own. These children mark the arrival of a new generation which will be branded, ostracised and excommunicated for life. India, with the maximum number of AIDS patients in the world, will soon have the maximum number of AIDS orphans.

Dr Manorama paints the scary scenario in stark colours, "Children of HIV positive patients see their parents/mothers suffer tremendously before dying painful deaths. As orphans, they are not accepted by society even if they are HIV negative. Instead, they are ill-treated. They can lead normal healthy lives, but face the same discrimination as HIV positive children. I strongly feel that they should be adopted and loved. Otherwise, they will be the problem generation of the future."

An HIV positive mother

Text: Shobha Warrier in Madras
Photographs: Sriram Selvaraj
Page design: Rajesh Karkera

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