Caught between the devil and the deep sea

When the Human Immuno-Deficiency Virus enters a home, the children bear its brunt, whether they themselves get infected or not. Says Vais...

When the Human Immuno-Deficiency Virus enters a home, the children bear its brunt, whether they themselves get infected or not. Says Vaishali Sambhus, medical social worker, Society for Friends of Sassoon Hospital SOFOSH 8220;The HIV infection is a very traumatic experience for them. Even if they are negative, they worry about their parents who they can see are dying.

8220;They are confused and cannot understand what or how their family has come to this state. All they can see is that there is no income and one or both their parents are dead. Their main concern is to have their parent with them. Often we receive pleas from children who are 10 or 12 years asking us to give their father or mother the best possible medical care.8221;

For those unfortunate ones who are HIV positive, life follows a very different script. Says Dr Sanjay Pujari, 8220;The unfortunate part is that we have no figures available for children so we don8217;t really know how many are infected. The only guesstimate we can get is from positive ante-natal mothers. In 1995, we had 1.5 per cent such women who were positive. In four years this figure has doubled to four per cent.8221;

Infants can get infected either before birth or during birth. According to statistics, 30 per cent children of infected mothers are born HIV positive. Says Dr Pramod Jog, paediatrician, 8220;Many-a-times children get infected during birth, getting the virus from the vaginal secretions. That is why we advocate Caesarean section births to such mothers. 8220;The single most important feature of HIV passing onto the child remains the AZT a drug therapy given to pregnant women in the third and fourth trimester. This reduces the passing on of infection by two-thirds. That is why it is very important that all pregnant women be tested for HIV so that we can prevent her child from becoming positive.8221;

But for a child born positive, life is different right from the beginning. Says Jog,8220;Though they have a normal birth weight, they fail to thrive. There is a controversy on whether positive mothers should breast-feed their babies or not as the virus passes from the mother8217;s milk. But the WHO has advised breast-feeding in third world countries only because such children will otherwise die of starvation.8221;

Therefore, children of positive mothers have very little chance of survival. In the slums, money is in short supply. Says Vijaya Lawate who runs a home Manavya for AIDS-affected and infected children, 8220;Often when their parents are no more, the extended family members are either too poor or afraid to keep such children for fear of getting infected themselves. An NGO generally refers them here. We try to give them the basics 8212; food, clothing, shelter and an education 8212; if it is possible.8221;

For those children who fail to reach such NGOs, poor health and a short life span are a foregone conclusion. Says Jog, 8220;Though there are no studies, a positive child generally lives up to 10 years, if he is asymptomatic in the first two years of his life. For a positive child, persistent viral infections are the bane of his life. Says Jog,8220;The HIV infection is a multisystem involvement in a child. Oral thrush, unexplained fever that does not respond even after 14 days to antibiotics, enlarged liver and spleen, recurrent gastroenteritis and in the later stages, pneumonia mar their life.

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One-year-old Seema whose father died in March this year of AIDS and whose mother is positive still cannot be tested till she is 18 months old. But for her mother, her low weight is a cause for concern. Says Asha 8220;Seema8217;s birth weight was 3 kgs and now at one year she weighs just 6 kgs. I pray to God that she is not positive.8221;

SOFOSH helps such children by providing nutrition every Saturday at Sassoon Hospital. Says Sambhus, 8220;We have 50 to 60 patients whom we provide with good food. We give them a week8217;s ration of pulses, eggs, fruits, vegetables in the raw form for a whole week. We also make home visits to ensure that they eat the food that we give them.8221;

Good food may help delay symptoms, but simply knowing their positive status can be killing. The very young do not understand what HIV is, but the older ones have to suffer discrimination in society. Says Father Felix of Sarva Seva Sangh, who helps place children affected by AIDS, 8220;We help the children of positive cases by placing such kids in hostels. What is of utmost importance is that no one knows the HIV status of their parents, or else they will never be allowed to live a normal life.8221; So far Sarva Seva Sangh has placed 47 such kids in various hostels in the city. Lawate too refuses to tell the children at her home about their HIV status. 8220;Why should I spoil their lives by doing that?8221;
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