The best possible presence in the lives of HIV children
By Patricia Nakell
Maputo, 27 March 2013 – You wouldn’t be blamed for not noticing Bernadina Gonçalves. Trailing behind the group of international dignitaries visiting the Polana Caniço Clinic that morning, the pediatrician remained a few steps behind, a shadow of a smile on her face, hands demurely clasped in front of her.
But beneath the unassuming demeanor is a highly skilled professional with what certainly must be one of the most difficult jobs in the world. Dr. Bernadina is a pediatrician working with HIV positive children in the outskirts of Maputo, in a country where 11.5% of 15 to 49-year-olds carry the virus, and where treatment is not always available to everyone.
In the past year alone, Dr Bernadina has cared for several patients patients, from newborns to 15-year-olds. Some have the constant support of a loving family, proper medication, food, and a near-normal life. Others are less fortunate.
Yet it is the positive that Dr. Bernadina prefers talking about.
“One of the best days of my week is when I visit the Casa da Alegria orphanage,” she says, eye shining with emotion. “I have a very strong connection to the children there. Not all of them are HIV positive, but some of the older teens have been my patients since they were toddlers.”
In fact, some of them are at the clinic today, putting on a performance for the visitors, and as soon as they are done with the song and dance, they rush to surround Dr. Bernadina, chatting with her and holding her hand. She is all smiles and the bond between them is obviously strong.
Dr. Bernadina patiently followed the delegation as they moved from one room to the next, though she must have had a pile of work waiting for her. The visit looked routine, but it was really anything but. The chair of the UNITAID Board was in the country to inaugurate the use of new point-of-care diagnostic devices that will shorten diagnosis time for HIV in babies, and may greatly improve the odds for the youngest patients.
“The earlier we have diagnosis, the earlier we can begin antiretroviral treatment,” she says, “and immediate treatment can make an enormous difference for longevity and quality of life, especially for children.” For the youngest, it is even a matter of life of death. Without antiretroviral treatment, half of HIV-positive babies die before reaching the age of two.
Some families bring their children for testing, but never come back for the results. Most come late, once the child has been sick for too many months, possibly after consulting a traditional healer.
“This is becoming better,” admits Dr Bernadina. “Thanks to communication work, through community radios and TV, families have begun to understand the importance of bringing children to treatment quickly.”
Dealing with this illness requires a holistic view, she insists. Proper timing and the right institutional treatment are important, but home care is almost as crucial, she says.
“Sometimes children are being cared for by elderly grandparents, who forget doctor’s appointments or when pills have to be taken. Or they are too poor to afford more than one meal a day, and children will need to eat several times a day with their medication.”
But beyond the obvious challenges of living with a potentially deadly disease, there is the emotional toll the infection takes on children.
“In some cases, children only learn of their infection when they become teenagers, which would be a difficult thing to deal with even for a mature adult. But for these youngsters, they don’t understand what they did wrong, or how to handle their fears. They may not understand why they need to continue swallowing 8 or 9 large pills every day for the rest of their lives, especially if they are feeling fine. They may be experiencing their first love. All of this complicates matters for them.”
The best thing for children is treatment that begins as early as possible, immediately, she says, but it is not enough.
“The unconditional support and love of parents and caregivers is just as important for the wellbeing of children with HIV,” says Dr. Bernadina.
Watching her as she interacts with the orphans of Casa da Alegria, who have no family of their own, it is clear that Dr. Bernadina Gonçalves comes as close to being the best possible presence in their lives as one could wish for.
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