Struggling To Die

Life, as is often said, is a struggle. But no one personifies this statement quite like African children dying of HIV/AIDS. They are constantly in pain so everything is a struggle; they struggle just to fall asleep, to wake up, to eat and even to smile. The pain is more than their barely developing brains or bodies can comprehend.

On a tiny bed of the clean but crowded children’s ward in a Hospital in KwaZulu-Natal, a tiny, staring child lies dying. She is three and has hardly known a day of good health. Now her skin wrinkles around her body like an oversize suit, and her twig-size bones can barely hold her vertical as nurses search for a vein to take blood. In the frail arms hooked up to transfusion tubes, her veins have collapsed. She mews like a wounded animal as one tightens a rubber band around her head to raise a vein. Tears pour unnoticed from her mother’s eyes as she watches the needle tap-tap at her daughter’s temple. Each time the whimpering child lifts a wan hand to brush away the pain, her mother gently lowers it.

Drop by drop, the nurses manage to collect 1 cc of blood in five minutes. This innocent child has had tuberculosis, oral thrush, chronic diarrhea, malnutrition, severe vomiting. The vial of blood reveals her real ailment, AIDS, but the disease is not listed on her chart. Now the child is afflicted with so many symptoms that her mother had to bring her to the hospital, from which sick babies rarely return. She hopes, she prays her child will get better, and like all the mothers who stay with their children at the hospital, she tends her lovingly, constantly changing filthy diapers, smoothing sheets, pressing a little nourishment between listless lips, trying to tease a smile from the agonized face. The baby stares back vacantly without blinking and three days later she is dead.

At first glance Ikhaya Lobomi (“House of Life”) seems to do its name justice but, on closer scrutiny, it becomes clear that this is a place for the rejected and the dying. The intense smell of sickness mixed with the odor of decay lingers in the air of this AIDS hospice, located in the Kwanyuswa area in the Valley of a Thousand Hills in South Africa’s eastern province of KwaZulu-Natal. In one of the beds lie the remains of Mandla Ngcobo (not his real name), covered only by a white sheet. He died three days ago but nobody has come to claim his body, and it has now begun to fester in the heat of the humid coastal province. Ngcobo’s family refuses to be associated with a relative who died of AIDS. It is now up to the hospice to bury the deceased, but a funeral costs more than the volunteer-run clinic can afford. Until the next donation comes in, Ngcobo’s body will have to stay where it is. Most of the people who come to Ikhaya Lobomi have nowhere else to go. Few patients have visitors – their next of kin have abandoned them, as if ridding themselves of the burden and disgrace of an HIV-positive relative. In the bed next to the dead Ngcobo there is a grey-skinned boy far too small for his age, his wide eyes full of apprehension – he has seen many beds fill and empty since he came here. His health was improving, but he is traumatized by the many deaths he has had to witness and now his health is declining again. He is afraid and his fear is killing him.

During the past decade more than 1 million children have been infected with HIV in Africa and more than 90% of them got infected by their mothers. Children with HIV infection suffer from the same common childhood illnesses as those who are not infected. The illnesses, however, are more frequent, last longer and may respond slower to usual treatments. The rapid spread of the disease is largely responsible for the escalating number of deaths of children below the age of 5 in Africa. These are our babies, our children, our future leaders dying of a disease that can be prevented by something as simple as education; ignorance about AIDS is profound. It is the crucial reason the epidemic has run out of control. Yet we turn away and act as if there is nothing wrong with the picture.

The predominant mode of HIV transmission is sexual and prevention of the continued spread of this disease must be based on fundamental changes in individual and societal sexual attitudes and practices. Prevention of common childhood infections through appropriate immunization, effective management of childhood illnesses and malnutrition, prevention and early treatment of opportunistic infections can improve the quality of life of HIV infected children.

The most effective way to reduce HIV infection in children is to prevent HIV infection in parents to-be and to prevent unplanned pregnancies in HIV infected women. Education on the use and the distribution of condoms, providing treatment for adults and children infected with HIV will go a long way in reducing the spread of the disease and the resulting deaths, especially of children. Also children infected with HIV who are well nourished have fewer infections and progress more slowly from HIV to AIDS.

These are facts I’m sure you have heard countless times and I’m not going to bore you with the statistics of this decimating epidemic. The truth is that these children need our help to combat the effects of this disease on them; our time, money and most of all our love. They cannot help themselves because they have no say in all of this. If they did, death would not come to them as horribly as we see it. Flesh, blood and humanity melt away from the bones of the sick and dying children, who find themselves all alone because of their illnesses.

We need to open our hearts and give all that we can to help them; not just talk about it or look at them and feel sorry for them wishing we could do more. Yes we can do more, we can give money to help procure drugs, food, clothes, blankets for them. We can give our time to take care of them, to talk to them, play with them, take walks with them, show them the beauty of life no matter how ugly it may seem to them. How can we not, when we see how they live; the pain and suffering that pervades their short lives. These are things that we have and can give to them who have less than nothing. Most of all let us be kind with our words and actions. In the end that is all that really helps; knowing that someone truly loves them and cares about what happens to them. They will all die, of tuberculosis, pneumonia, meningitis, diarrhea, whatever overcomes their ruined immune systems first. So much has happened to them and, try as we may, time cannot erase it from our minds nor from the history books.

But we can try with all our might and all that we have inside of us to correct the mistakes of the past and secure a brighter, happier future for them. All we can do is help them wipe away their tears when they cry and comfort them when they hurt inside from misery and pain. They were meant to live and be so much more than a statistic but even that has been cruelly ripped out of their tiny hands, through no fault of theirs. Let us walk a mile in their little shoes and feel where and how it hurts, share in their sorrows. Maybe then it will be easier to give whatever and all that we can to help reduce their terrible afflictions.

Open your hearts to these children and let them in. They need your love and your help to live and, ultimately, die with dignity.

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