Sad Thursday

The infant of an HIV-infected mother will not necessarily be infected with the HI-virus at birth. The baby has two chances out of three of escaping the virus. Thanks to agents such as Nevirapine, the risk of acquiring infection from the mother is reduced to one in nine. Unfortunately this means that on average, every ninth test we carry out on six-week-old infants will turn out to be positive.

Such was the case with Cynthia Matroos'* baby last Thursday. A fortnight before we had sent a sample of blood to the virology laboratory. That morning we had to tell Cynthia that her daughter had been infected with the HI-virus. This happened despite the fact that Cynthia was given Nevirapine shortly after going into labour and that the baby received the drug shortly after her delivery.

Of course, Cynthia was very upset to hear the bad news. She had half expected it, because her baby had not been looking well. She took the news badly, partly because she comes from the country and has no relatives in Cape Town. She had not yet been able to gather the courage to inform the people at home of her diagnosis. To make matters even worse, she was unwell herself and was being treated for a chest infection.

Cynthia and her baby's father are not married, but they live together. She told him about the HIV infection while she was still pregnant. She said that he took the news fairly well. He is also unwell. He has had himself tested and is awaiting the result. They have not been getting on too well for a while now, and Cynthia was worried that news of their baby's infection could only make things worse.

Cynthia is really suffering. Her burden is more than any person should have to bear. She and her whole family are sick; she is without support and far from home.

The HIV clinic can offer some help. Our social worker has already begun counselling Cynthia. Our two home-based care workers, Eunice Majola and Lumka Kula, of the South African Red Cross, have set to work. They will welcome Cynthia to group support meetings in the community. Cynthia will meet other women with problems similar to her own. Mother and child will visit the clinic every four weeks. They will see their own doctor, who will treat whatever medical problems they might have. Hopefully, Cynthia and her doctor will develop a mutually trusting relationship.

When Cynthia becomes too sick to work, we will help her to apply for a disability grant. The baby will be provided with a supply of infant formula milk at every visit. The Hospital Benevolent Fund will pay Cynthia's bus fare to and from the clinic. If we are sure that home circumstances are stable and if we know that there will be someone to administer medicine to the baby, she will receive anti-retroviral medicines. We will also have to start planning for the baby's future should Cynthia no longer be there.

However hard we try, Cynthia's well-being will remain in jeopardy, because she is without the emotional support of her family. Even if they had lived in Cape Town, she might well not have told them of her disease. Our experience is that the majority of women do not disclose their diagnoses at home. A loss of emotional support to the HIV-infected person is only one of the consequences of non-disclosure. Without the necessary knowledge, Cynthia's family will not be able to plan for her inevitable sickness and death or for the care of the future orphan.

The fact that Cynthia is silent about her sickness is an epidemiological disaster. Because members of her family do not know the facts they have no sense of how real their own risk of infection is. To them, HIV infection will remain a theoretical possibility, something to read about in the papers and not the immediate reality it actually is. Because they are not fully informed of their risk, family members are less likely to take the necessary care to avoid infection.

There is a clear and urgent need that we should all find it easier to disclose our HIV infections. It might help if the necessary health care were readily and reliably available, so that we could think of HIV and AIDS as just another illness needing treatment, rather than something fatal and impossible to manage. It might also help if the health care workers asking us to consent to an HIV test would afford us the chance of talking things over with our families before deciding to be tested. In this way, it could be easier to break the news of a positive test result and to avoid becoming a prisoner of ones secret.

Since the South African government's recent change of attitude toward HIV and its treatment, the climate for openness and public acceptance of HIV positive persons is looking better. The Ugandan nation has shown what a policy of openness can achieve. Ordinary people can do ordinary things that will drop the infection rate in any country. We must hope that we can establish this climate and these attitudes in South Africa. We must believe we can do it, because we have to.

* Not her real name

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