Living and growing up with HIV
** All real names have been changed to protect the identity of the infected.
Six year-old Alpha Sarr, from the Central River Region of The Gambia, lives with his mother in the family compound of his maternal grandparents. He has been HIV positive all his life but nobody, except his mother and his home-base care volunteer, knows about his status.
Stigmatization, discrimination, isolation, abuse…. These are some of the words that propel his mother, Jainaba Sarr (aged undetermined but estimated between 25 – 30 years), to keep his status a secret for as long as she can.
“Ours is a small community and people will treat us differently if they know,” said Jainaba. “I cannot bear the thought of people pointing fingers at my son.”
Although HIV prevalence in The Gambia is relatively low, at 1.9 per cent according to the preliminary results of the 2013 national Demographics and Health Survey (DHS), HIV and AIDS still continue to impact on children in The Gambia.
While there is no specific data on children infected or affected by HIV, results of the DHS indicate that 8 per cent of children in The Gambia under 18 are orphaned through the death of one or both parents, some presumably by AIDS. The percentage of orphan hood increases with the age of the child, from 3 per cent for children under five to 17 per cent for children 15-17 years.
Both Alpha’s parents are alive, but he falls within the 40 per cent of vulnerable children living with only one parent – his mother.
“Alpha was born a sick baby,” said Jainaba. “But we only discovered his status after I was tested positive for HIV about 5 years ago and was advised to test my two children as well. The result of my daughter, Fanta who is now 8 years-old, was negative for HIV but Alpha’s was positive.” She added tearfully, “I infected him.”
Jainaba knew that she contracted HIV from her husband because of his regular bouts of illnesses. “He is always sick,” she disclosed. “A couple of years after we were married, I also started to get sick – it was mostly diarrhoea. I would become so weak that I could hardly lift up an arm.”
After her status was confirmed, Jainaba was asked by her case nurse to return with her husband, Lamin for voluntary counselling and testing (VCT). But he refused to acknowledge that he is sick, claiming that “contracting HIV is impossible in his family because they never get ‘blood sicknesses’.” Lamin warned Jainaba to never speak to him or anyone else about HIV again.
Disregarding her husband’s orders, Jainaba returned to the hospital without his knowledge and, today, both she and Alpha are among those receiving ARV as well as other forms of support and are able to live a relatively healthy and normal life.
However, many vulnerable children infected or affected by HIV, such as Alpha, are often left behind and do not benefit from the same social advantages and rights as more privileged children due to several factors.
Often, the child’s overall health – including her/his mental and emotional well-being and development as well as nutrition status – is often compromised when a parent of the child becomes sick or dies. Also, the absence of a protective figure in a child’s life usually puts her/him at risk of violence, exploitation, discrimination and stigmatization.
More significantly, a child orphaned or made vulnerable by HIV/AIDS often drops out of school either due to lack of support or to assume an adult role taking care of her/his younger siblings.
Alpha is among the lucky ones – he is receiving the necessary help he needs to continue living a happy and productive life, thanks to UNICEF intervention.
“We are poor and find it difficult to get by, so I am grateful for the help we are receiving from CaDO and UNICEF,” said Jainaba.
As a complement to the Government’s efforts to curb the spread of HIV in the country, UNICEF provides nutrition, education and psycho-social support to children under-five infected or affected by HIV in two of the poorest regions in the country: the Upper River and Central River regions, through the non-governmental organization, Catholic Development Office (CaDO). Currently, 500 OVCs are being supported in both regions under this partnership.
Alpha is among the 500 OVCs already receiving nutritious food stuff such as rice and oil. But, because he is HIV positive, he also receives financial support for supplementary products like vegetables to help boost his immune system. Additionally, he is united regularly with other OVCs in his region for group counselling and play/game sessions to enhance their emotional and social well-being.
In 2015, when he reaches school age, Alpha will be enrolled in school and will receive financial support with school fees, books, uniforms, shoes, money for school lunch and other necessities for him to receive a good education.
Moreover, Jainaba and Alpha’s home-based care volunteer has been sensitizing them on basic health and hygiene issues, child rights, issues of stigma and discrimination and how to protect those around them from being infected.
“I thank Allah,” said Jainaba. “My daughter, Fanta, is in school in Bansang and I do all I can to make sure that she never gets infected, and my son is receiving the support he needs. But, there is nothing I can do about my husband, who still sleeps with me regularly.”
Lamin Sarr has a second family – a younger wife with whom he has over 7 children – all of whom may already be infected or are at risk of infection.
Jainaba and Alpha’s home based care volunteer continues to advocate with Lamin to accept VCT for both himself and his second family and prevent the further spreading the virus and the cycle of continually re-infecting Jainaba.
Meanwhile, UNICEF will continue to support CaDO and the government of The Gambia to ensure that more OVCs, and especially those infected with HIV like Alpha, receive the help needed for them to live long, healthy, happy and productive lives.