Friday, December 03, 2004
Dr Manorama and CHES
On World AIDS Day, December 1, even as the focus is on the larger issue of how to arrest the rapid spread of the killer disease, there is a section of infected people that cries for more attention and care.
Children.
In India, about 14 per cent of all HIV-infected and AIDS patients are children.
The plight of many of them is compounded by the fact that they have lost their parents to the disease, and they don't have a home to call their own. Being HIV-infected, their relatives and society have abandoned them.
Like other children, all they yearn for is care and empathy, which is absent because of the taboo attached to AIDS.
For some HIV-infected children in Chennai, there is a silver lining in the form of the Community Health Education Society Ashram, run by Dr Manorama.
Dr Manorama was a paediatric gastroenterologist, working as an assistant professor at the Institute of Child Health in Chennai. In 1993, she came across two children -- Krishnaveni and Ravi, who were abandoned by an orphanage after they tested positive for HIV. The doctor decided to shift them from the hospital to her nursing home. Thanks to her care, both became normal (clear of opportunistic infections) in six months.
Dr Manorama then realised children afflicted with the HIV virus could get better with proper care.
Thus, CHES was born. It is the only home for HIV infected children in Chennai.
Now, if a child is tested positive, it is immediately sent to CHES.
Some live long, some die early.
CHES was conceived as a long-term care centre. But now, Dr Manorama stresses that care by a family is far more important for these children than institutionalised care. And, hence, the ashram has become a short-term care centre.
Without Anti Retroviral Therapy, HIV-infected children normally do not live beyond the age of 15. "But with the government now providing ART for free, we will soon see children living longer," says Dr Manorama. "What will be their future?" she wonders.
"They are not going to get any physical support or social security. They will also be denied education. How are we going to prepare these children to face adolescence? They may fall in love, they may like to get married, there are a whole lot of issues. What is the solution? We should start thinking about all this," she says.
Krishnaveni, one of the first two inmates at CHES, wanted to live in a home where she had parents, brothers and sisters. 'I wish I had my parents. I wish I had a home. I wish I had a pond in my house. I wish I had lots of fish and lilies in the pond. I wish I had lots of books to read,' she had said.
However, she passed away in December 2002 without having her dreams fulfilled.
There are many Krishnavenis among the HIV infected children, who yearn for a family.
For some, this wish may come true. Overcoming prejudice, some families have come forward to adopt HIV-infected children.
When Soorya, a slum-dweller with two boys, brought infected 9-month-old Shubha home as a foster child, it was the first case in India of an AIDS orphan getting a family. "All of us were scared of HIV and AIDS till the volunteers from CHES talked to us about it," says Soorya.
It was a long and arduous task for CHES volunteers to find foster families for the infected children. They took up the task in three phases.
They first created awareness about HIV/AIDS.
Then they brought families to the shelter home to interact with the children. Seventy-eight people attended the first session. But the number came down to 22 in the second session.
The third stage was giving the 22 families intensive training on how to take care of the children.
When the time came for further discussions, only four turned up.
In the end, only two families -- that of Soorya and her neighbour Moksham -- agreed to be foster parents.
Soorya says she decided to take care of one child after interacting with the children at the ashram.
"The moment the children saw us they surrounded us, hugged us and wouldn't leave us when it was time for us to go. All of them were starved of a mother's love. I felt so bad for them. At that moment, I decided to take care of a child."
"When I brought Shubha home a year ago, she was so small, small as a rat. She couldn't even turn to one side. Now, she runs all the time. She is the darling of the entire neighbourhood. I will never be able to live without her."
"I don't think I have done anything great. What have I done except give love to an orphan?"
Moksham decided to be Nitya's foster mother after she saw Soorya bring Shubha home. "When I first saw those infected children at the ashram, I was horrified. They looked so ill and starved of love. I told my husband that we should take care of one child. But my husband was against the idea. I told him all that the doctor and the volunteers told me," she says.
Now both father and daughter are close to each other, Moksham says with a smile.
"I said no to the girl at first. Now, I don't know how I will live without my daughter. We had a tough time taking care of her in the first month. She cried all the time without eating or sleeping. After that, there has been no problem. She is so attached to me that if I am late coming home, she comes to my workplace," says Chidambaram, Moksham's husband.
Both Soorya and Moksham were allowed to become foster parents on the understanding that if the girls reported negative when they were 18 months old, they would be returned to the ashram, where the children would be placed for adoption.
Both Nitya and Shubha are 18 months old now, but the families have refused to have them tested for the HIV virus.
"What if they turn negative? No, we don't want to give them back," say Soorya and Moksham.
"I have told the doctor not to take her (Nitya) way from us if she turns out to be HIV negative. I will not be able to live without her," says Chidambaram.
Dr Manorama is now trying to work out the modalities to enable the foster parents have their daughters.
"We are planning to get sponsorship for these children. But I must give credit to the families. They have so far refused to accept any support. Many students and volunteers have come forward to help them."
Ironically, says Dr Manorama, only economically weak families come forward to provide these children a home. During lectures on foster care for infected children she delivered at some corporate houses, she talked about Shubha and Nitya.
Many in the audience asked why she gave the children to two poor women, the doctor recalls. "I then asked the gathering: 'How many of you are willing to take an infected child for foster care?' There was total silence. Nobody was willing to do it. I told them this is exactly why I gave those two children to poor women."
"Something is definitely holding back people in the higher socio-economic levels from adopting infected children," she says. "Another problem is while it is easy for our volunteers to go and talk to slum-dwellers, they do not get access to middle class or upper-middle class apartments. We cannot knock on those doors and talk about foster care."
"As long as women are going to get infected, there are going to be more and more infected children. So, women must be empowered. We also have to see to it that these children don't suffer from stigma and discrimination. Equally important, if not more, is a family for them."
If extended families come forward to take care of these children, the number of infected orphans will come down, she says. Foster care is another solution, points out Dr Manorama, even as she hopes that more and more families will be encouraged by Shubha and Nitya.
Children.
In India, about 14 per cent of all HIV-infected and AIDS patients are children.
The plight of many of them is compounded by the fact that they have lost their parents to the disease, and they don't have a home to call their own. Being HIV-infected, their relatives and society have abandoned them.
Like other children, all they yearn for is care and empathy, which is absent because of the taboo attached to AIDS.
For some HIV-infected children in Chennai, there is a silver lining in the form of the Community Health Education Society Ashram, run by Dr Manorama.
Dr Manorama was a paediatric gastroenterologist, working as an assistant professor at the Institute of Child Health in Chennai. In 1993, she came across two children -- Krishnaveni and Ravi, who were abandoned by an orphanage after they tested positive for HIV. The doctor decided to shift them from the hospital to her nursing home. Thanks to her care, both became normal (clear of opportunistic infections) in six months.
Dr Manorama then realised children afflicted with the HIV virus could get better with proper care.
Thus, CHES was born. It is the only home for HIV infected children in Chennai.
Now, if a child is tested positive, it is immediately sent to CHES.
Some live long, some die early.
CHES was conceived as a long-term care centre. But now, Dr Manorama stresses that care by a family is far more important for these children than institutionalised care. And, hence, the ashram has become a short-term care centre.
Without Anti Retroviral Therapy, HIV-infected children normally do not live beyond the age of 15. "But with the government now providing ART for free, we will soon see children living longer," says Dr Manorama. "What will be their future?" she wonders.
"They are not going to get any physical support or social security. They will also be denied education. How are we going to prepare these children to face adolescence? They may fall in love, they may like to get married, there are a whole lot of issues. What is the solution? We should start thinking about all this," she says.
Krishnaveni, one of the first two inmates at CHES, wanted to live in a home where she had parents, brothers and sisters. 'I wish I had my parents. I wish I had a home. I wish I had a pond in my house. I wish I had lots of fish and lilies in the pond. I wish I had lots of books to read,' she had said.
However, she passed away in December 2002 without having her dreams fulfilled.
There are many Krishnavenis among the HIV infected children, who yearn for a family.
For some, this wish may come true. Overcoming prejudice, some families have come forward to adopt HIV-infected children.
When Soorya, a slum-dweller with two boys, brought infected 9-month-old Shubha home as a foster child, it was the first case in India of an AIDS orphan getting a family. "All of us were scared of HIV and AIDS till the volunteers from CHES talked to us about it," says Soorya.
It was a long and arduous task for CHES volunteers to find foster families for the infected children. They took up the task in three phases.
They first created awareness about HIV/AIDS.
Then they brought families to the shelter home to interact with the children. Seventy-eight people attended the first session. But the number came down to 22 in the second session.
The third stage was giving the 22 families intensive training on how to take care of the children.
When the time came for further discussions, only four turned up.
In the end, only two families -- that of Soorya and her neighbour Moksham -- agreed to be foster parents.
Soorya says she decided to take care of one child after interacting with the children at the ashram.
"The moment the children saw us they surrounded us, hugged us and wouldn't leave us when it was time for us to go. All of them were starved of a mother's love. I felt so bad for them. At that moment, I decided to take care of a child."
"When I brought Shubha home a year ago, she was so small, small as a rat. She couldn't even turn to one side. Now, she runs all the time. She is the darling of the entire neighbourhood. I will never be able to live without her."
"I don't think I have done anything great. What have I done except give love to an orphan?"
Moksham decided to be Nitya's foster mother after she saw Soorya bring Shubha home. "When I first saw those infected children at the ashram, I was horrified. They looked so ill and starved of love. I told my husband that we should take care of one child. But my husband was against the idea. I told him all that the doctor and the volunteers told me," she says.
Now both father and daughter are close to each other, Moksham says with a smile.
"I said no to the girl at first. Now, I don't know how I will live without my daughter. We had a tough time taking care of her in the first month. She cried all the time without eating or sleeping. After that, there has been no problem. She is so attached to me that if I am late coming home, she comes to my workplace," says Chidambaram, Moksham's husband.
Both Soorya and Moksham were allowed to become foster parents on the understanding that if the girls reported negative when they were 18 months old, they would be returned to the ashram, where the children would be placed for adoption.
Both Nitya and Shubha are 18 months old now, but the families have refused to have them tested for the HIV virus.
"What if they turn negative? No, we don't want to give them back," say Soorya and Moksham.
"I have told the doctor not to take her (Nitya) way from us if she turns out to be HIV negative. I will not be able to live without her," says Chidambaram.
Dr Manorama is now trying to work out the modalities to enable the foster parents have their daughters.
"We are planning to get sponsorship for these children. But I must give credit to the families. They have so far refused to accept any support. Many students and volunteers have come forward to help them."
Ironically, says Dr Manorama, only economically weak families come forward to provide these children a home. During lectures on foster care for infected children she delivered at some corporate houses, she talked about Shubha and Nitya.
Many in the audience asked why she gave the children to two poor women, the doctor recalls. "I then asked the gathering: 'How many of you are willing to take an infected child for foster care?' There was total silence. Nobody was willing to do it. I told them this is exactly why I gave those two children to poor women."
"Something is definitely holding back people in the higher socio-economic levels from adopting infected children," she says. "Another problem is while it is easy for our volunteers to go and talk to slum-dwellers, they do not get access to middle class or upper-middle class apartments. We cannot knock on those doors and talk about foster care."
"As long as women are going to get infected, there are going to be more and more infected children. So, women must be empowered. We also have to see to it that these children don't suffer from stigma and discrimination. Equally important, if not more, is a family for them."
If extended families come forward to take care of these children, the number of infected orphans will come down, she says. Foster care is another solution, points out Dr Manorama, even as she hopes that more and more families will be encouraged by Shubha and Nitya.
