Ruth Ansah Ayisi
MAPUTO, Nov 30 2006 (IPS) – Dressed in jeans and a sweater, Julia watches cautiously as her mother talks on her behalf. But as the interview proceeds, she gains confidence and begins to speak for herself.
When the psychologist told me I was HIV-positive, I was angry, says Julia without a trace of bitterness. She has the composure of someone much older than her 13 years.
Dressed in jeans and a sweater, Julia* watches cautiously as her mother talks on her behalf. But as the interview proceeds, she gains confidence and begins to speak for herself.
When the psychologist told me I was HIV-positive, I was angry, says Julia in a melodic voice, without a trace of bitterness. She has the composure of someone much older than her 13 years.
I never cried, even though I thought I would die. That was on December 12, 2005, she says without hesitation. Her mother smiles at her, putting her hands over Julia s clasped hands to give her encouragement.
Her mother thinks that Julia probably became infected with the HI virus during a blood transfusion which she received almost 10 years ago when she was sick with malaria. Julia is the only HIV-positive family member.
Julia continues eloquently in Portuguese, Mozambique s official language. The psychologist then explained with a drawing how the virus has attacked my immune cells. And that is why I had got so sick. I only weighed 49 kilos and my CD4 count was just a hundred.
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The CD4 count measures the number of immune cells; if a person s count drops below 200 they are no longer able to fight viruses effectively, and should go on anti-retroviral drugs (ARVs) to prolong their lives.
The psychologist then showed how the anti-retroviral drugs will attack the HIV in my body.
Julia is now on ARVs, which she says she always remembers to take at eight o clock in the morning and at eight o clock at night. Her health has improved. One of the main challenges for her now is how to live in a society which stigmatises people, including children, who are living with HIV/AIDS.
The secrecy shrouding the virus contributes to the rising HIV/AIDS prevalence rate in Mozambique. It is estimated that 16.2 percent of the population aged 15-49 years old is HIV-positive. Julia is among the estimated 100,000 children under 15 years who are living with the virus.
The majority of children living with HIV have been infected by their mothers during pregnancy, childbirth or breastfeeding. Most of them have not had to face the psychological trauma of living with the virus because they died within the first two years of life.
But the introduction of ARVs for children has meant that HIV-positive children live longer. Children like Julia who were infected when they were older have to deal with an enormous psychological burden.
Julia attends the Paediatric Day Hospital in the capital, Maputo. It opened in May 2004 with support from the French embassy and the United Nations Children s Fund, and provides outpatient care to over 2,000 children living with HIV.
The main reason why children on ARVs die is because their parents bring them in too late, says Dr Paula Vaz who heads the hospital. And the reason for this, she adds, is stigma.
Vaz contends that Children accept their HIV-positive status easier than their parents. It is the parents who are often in denial about their child s status.
She recalls how an 11-year-old boy, a patient of hers, was expelled from school because of his HIV status. I was full of rage when I heard.
However, she decided to organise an HIV/AIDS awareness day at the school to educate the teachers and headmaster. She and her staff gave talks, and they arranged fun activities including a football tournament.
I recognised some of my patients at the school. There was so much happiness in the air, she says.
According to Vaz, the children adhere well to the treatment regime. Our major success to date is our child survival rate, which is at 95 percent after two years of providing ARV drugs. It can be achieved, but you need a committed team.
The hospital offers a package which includes medical, psychosocial and nutritional treatment and support. Only a few children are on second line ARV drugs, referring to ARVs administered in cases where the patients experience resistance or severe side effects.
Counselling and psychosocial support for the children forms a central part of the care at the Paediatric Day Hospital. Artists, who come to the hospital twice a week, work with the children to produce the impressive artworks adorning the hospital walls. It helps the children to express emotions that they sometimes cannot put into words, Vaz points out.
Julia loves painting and writing poetry on HIV/AIDS and her feelings. My poems have messages that we are not alone and there are lots of us in the same position. I feel normal, like any other child.
The psychologist at the hospital, Caterina Mboa Ferão, says that breaking the news to children that they are HIV-positive has become easier now that there is treatment. Before, HIV meant death; but now we can talk about life, and we re seeing our children grow up.
Yet it can be difficult to decide when to tell a child he or she is infected with HIV. Ferão works with the parents to evaluate how prepared each child is to receive the news. Generally it is better for them to know sooner rather than later.
We recommend that the parents prepare their children and tell them when the children ask, says Ferão. It makes it difficult for the children when they know we re hiding something from them.
When asked about Julia, she comments that she accepted her situation easily, and tries to look at HIV in a positive way.
Yet Julia knows that most people do not see HIV/AIDS the way she does. My family (are) the only ones that know I am HIV-positive. I don t tell my friends or my teacher.
My psychologist said that because of the stigma, I shouldn t tell people unless I have discussed it with my mother and her, and only if we trust them, she adds, holding her head high.
* Name changed to protect her privacy.
