Deadly inheritance: The virus killed our parents, now it lives in us, say HIV orphans

The virus killed our parents, now it lives in us, say HIV orphans

It was a cold, windy August night in 2014. In a bush located in a Lagos community, there she was. Frail, sickly, and at the brink of death, the three-year-old would have died if she was discovered an hour late. Though rescued, she could not utter a word one month after her rescue.

Indeed, children are gifts from God, but Tomiwa (not her real name), who was born with the Human Immunodeficiency Virus, was not considered a gift by her parents.

“The bush we found her was a terrible place and people don’t pass that place around that time because it’s dangerous,” said her foster mother, who is also a caregiver. Craving anonymity in order to protect her family from stigmatisation, she said, “Tomiwa is simply a precious gift that no matter her condition, no one should have abandoned.

“We took her to the Baale’s palace and from there, we took her to the police station around 1am. The following day, in company with a police officer, we took her to the General Hospital for a medical test and found out she was HIV positive. Initially, the policeman thought I would dump her, but I don’t have children of my own. Though I’m barely surviving, this baby was like an acid test for me. I want to prove that her mother was wrong to have thrown her away. Out of my little, I have been able to take care of her so far.

“It’s an expensive venture because she takes drugs every day. That first week, I spent about N38,000; my church helped with about N12,000 and I’ve spent between N60,000 to N70,000 on medication and other expenses. On a daily basis, I give her about N500 worth of drugs to stabilise her condition. She eats normally as a growing child. But, the moment she becomes hungry, she starts sweating and I wouldn’t want her to be hungry for a minute. In a month, for her upkeep alone, I spend at least N10,000, aside from other expenses. Last month, I was at a crossroads, and thought maybe I shouldn’t have done this (saved her). But on a second thought, where would I take her to? Now, her condition is improving and she can interact with other children. Also, I ensure she doesn’t get close to any sharp objects or something that can cause injury.”

Baby Tomiwa is not the only orphan living with HIV.

Idris, 12, was discovered to be HIV positive at age seven. His mother died of HIV/AIDS and a year later, he lost his father too. When his guardians and relatives got to know about his condition, they abandoned him at the hospital where help came through a non-governmental organisation. A few years ago, the NGO decided to help with his financial, educational and medical needs. They also sent money and food regularly to the ailing boy’s guardians. The items never got to him until he fell seriously sick again.

“His guardians wanted him to die, because they said they were tired of coping with his condition,” recounted Mrs. Doris Yaro, founder of Gabasawa Women and Children Empowerment Initiative.

“We learnt that the food we sent to his guardians was given to their children, and they isolated the boy until his situation worsened. We didn’t know the relatives were not taking care of him until he fell seriously ill and told them he wanted to see me. When I eventually saw him, I wept because he had lost so much weight. He cried when he saw me and he asked for water. My joy was that he saw me, and he saw that someone cared for and loved him. I took him to the General Hospital where I was told his situation had deteriorated.”

Idris died the following day.

‘I once prayed for death’

At 17, Justin has contemplated suicide several times in his young life. Justin found out his status six years ago. He lost his mother to HIV, and his father abandoned him soon after discovering his son was also HIV positive.

“I was always sick and I once prayed for death because I felt that if I died, it would be better than experiencing all the pains I was going through,” said Justin, who lives with his aged grandmother.

To protect himself from any form of stigmatisation, he treks many miles away from where he stays with his grandmother to visit the hospital regularly for drugs, counselling, and treatment.

He said, “I discovered my status when I was in JSS 1. Then, I was over 10 years old. The principal of the school told me about my status after I fell very ill and they had to take me to a nearby hospital, which then referred me to the General Hospital. When they told me I was positive, I felt like dying. Only the principal knew about my status; he was kind to me, sometimes he gave me foodstuff and bought things for me. I was able to stay in the school. For a long time, I was scared of playing with children because I thought I would infect them that way.”

Although none of his friends knew (they still don’t know) about his status, Justin, who has just completed his secondary education, is an introvert and dreads the day any of his friends would discover his condition. “I can’t do some things boys my age do. I used to think I’m not like them; that I’m just different from them. I also think of what would happen if one day my friends know that I’m HIV positive, how will they feel? Sometimes, I don’t feel like playing with them. I don’t want any of my friends to know about my status, I don’t want anything that would make them run away from me,” he said.

Justin, who wants to study Economics in the university added, “If not for the help of people around, it hasn’t been easy. My grandmother sells firewood and she is too old to keep working to send us to school, to feed and accommodate us. I want to be somebody in life, despite my HIV status. I know if I further my education, I can become somebody in life. I need sponsorship.”

Asked his views on HIV/AIDS, he responded, “I know HIV is not a death sentence, but my friends don’t know this. HIV doesn’t kill; it depends on how you take your medication. I would have died because I was not taking my drugs regularly. Every day, I fall sick, and I am rushed to the hospital regularly. I’m tired of it all, why is it only me that falls sick all the time? I feel ashamed; whenever I see my schoolmates, I feel like hiding.”

What would he tell his father if he eventually meets him again? The lanky framed boy simply shrugged nonchalantly and said, “For my dad, I don’t know his status, but I don’t have anything to tell him. I just feel sad that he left me. I wonder if people who are positive are not human beings also.”

Infected but innocent

Like Justin, six-year-old Tayo and five-year-old Ranti (not real names) are also HIV positive. They live with their aged grandmothers in a village in Kwara State. Tayo’s grandmother fends for the little boy whose parents died of HIV.

“I know I have a sickness,” skinny Ranti could only say. Wariz, a Primary Two pupil, added, “I feel bad that I’m not well and I take drugs all the time.”

To Mrs. Rashidat Lawal, their caregiver, both kids don’t understand the gravity of their conditions. “Although they know that they have a sickness, and they also know that they are being treated for what is called HIV, they don’t understand the severity of their conditions because they are still children. It’s been a life of struggle for these children. Ranti is malnourished. Her aged grandmother can’t take good care of her because she is poor. Tayo lives with his 70-year-old grandmother who sells sweets and biscuits in front of her house. She takes care of the boy with the meagre amount she makes and also sends him to school. They bring them to our clinic and I monitor them in order for them to take their drugs regularly,” Lawal said.

Their HIV status, she added, is shielded from the children they play with. She said, “We ensure they play normally with children of their ages. Ranti’s mother was careless because she didn’t disclose her status when she was pregnant. The mother didn’t come to the clinic to collect drugs when she was pregnant, that was how the girl contracted the HIV. We don’t know much about the father. There is the need to help the children further their education. There is no money to buy their books.”

A senior community care specialist of an NGO, Management Sciences for Health, Kwara State, Mr. Kunle Omotoso, said, “For young children of this age, even if they seem to know their status, some of them don’t understand the gravity. They don’t see it as anything, it’s only the caregivers that know that these children would take the anti-retroviral drugs for life.

“But, children being who they are, a child of five or six years would think he or she is simply taking pain killers. However, when they grow older, we tell them the implication of the drugs. But at this stage, they may not be able to comprehend the level of the health challenge they have, that’s why we ensure there must be a caregiver or an elderly relative living with them.”

Left to face the world alone

Segun, a 16-year-old, also lost his parents to the dreaded virus recently. He has been roaming the streets to make ends meet. He is also HIV positive.

“He moves from one motor park to another, from one mechanic workshop to another, and people drive him away like a castaway. Nobody wants to associate with this boy. He is 16, but he looks like he is eight years old. He doesn’t have food to eat,” Yaro said, adding that Segun was last seen a few weeks ago.

When we tried locating Segun at Mushin, his last place of abode, it was discovered that he had moved to location in Iyana-Ipaja, another suburb in Lagos. At the time of this report, his whereabouts were still unknown.

Segun and others are not all the children orphaned by HIV/AIDS in the country. According to the United Nations Children’s Fund, there is an estimated 8.6 million orphaned children in Nigeria, out of which 930,000 are orphaned by AIDS. Referred to as ‘excluded and invisible children,’ by the UNICEF, they are faced with societal stigmatisation and are mostly helpless due to their health conditions. The global body noted that such “orphans and vulnerable children are easily trafficked, prone to sexual assault, less likely to attend schools, stigmatised and excluded. They therefore deserve special care, but currently, no adequate care system and social services are available to them.”

It also noted that the stigma and discrimination attached to AIDS culturally are transferred to orphans whose parents died of AIDS; hence they are not integrated into their communities. In many cases, the children are also stigmatised and ostracised by the society that is supposed to help them cope with their loss and health condition, noted experts.

The Coordinator, Humanity Family Foundation for Peace and Development, Mrs. Adekemi Adeyeye, opined that stigmatisation of such children was due to ignorance and called for public enlightenment.

“Even in some cases, where these children live, they have separate bowls, eating utensils and other personal effects. Moreover, their aged grandparents may not know exactly how to care for them because they also lost their children to the disease. Stigmatisation more difficult for children because they are not mature enough to assimilate it; they only grow up to know they carry the virus and have to live on drugs. Also, they experience a challenge in adhering to drug prescription because they are children.

“There is the need to encourage continuous enlightenment. We need to realise that these children are also ours, they are our burden, and we still need to look after them. We should encourage our children to know that their friend, who is HIV positive, is still their friend- a mere hug doesn’t mean they would contract the virus,” she said.

A consultant pediatrician and chief research fellow, Nigerian Institute of Medical Research, Yaba, Lagos State, Dr. Nkiruka David, also spoke about the challenges HIV orphans face. “These children have social challenges and need to be looked after by caregivers. Also, some of the caregivers (elderly relatives) are not buoyant enough to take care of the children, but society expects them to. The children have to pay regular visits to the hospitals and take their drugs. It’s quite challenging for some of them. Some of them don’t have or feel that parental love because they are orphans or have lost a parent. They feel lonely and abandoned. They need somebody to show them that love,” she said.

To Yaro, such kids need compassion, passion and sincerity from government, individuals and NGOs.

“They also need medical, nutritional, educational and psycho-social support. Some of them have no one to cater for them. These challenges affect their development in several ways,” she added.

Aside from stigmatisation and discrimination, Omotoso noted that orphans and vulnerable children are also faced with several life challenges, from getting a good education, to their basic financial and social needs.

Some of the major challenges they face include, malnutrition; frequent sickness without access to quality health care; lack of access to health care; quality education; protection; emotional support; and shelter; while most of them end up fending for themselves.

“Some of them drop out of school or never attend one and they begin to roam around the streets and become street children because of their condition. They are also faced with sexual abuse and other forms of abuse and vices in society,” he added.

A child rights advocate, Mr. Afolabi Sam-Adeboye, noted that as soon as a child knows about his or her status, it begins to affect him or her psychologically.

“Once the knowledge is known to his peers, stigmatisation begins. Children, friends and people within the community start to ostracise and segregate them. It also becomes very difficult for their caregivers to treat them as their own children, thus resulting in emotional imbalance.

“When they are not able to get the right care, it becomes difficult to get the right nutrition. If they don’t have the right nutrition, their immunity level will continue to fall by the actions of the HIV in their blood. But if they eat good food and take their anti-retroviral drugs and the medication given them regularly, they live well. HIV does not kill, what kills are the circumstances surroundings the care that they get, which is lacking. Once it is lacking, every other thing breaks down. What they need is care, and once they have that care, they would surmount every problem.”

Adeyeye said people in the society can help the orphans in various ways.

Enumerating her points, she said, “Individuals can help take care of their health care bills, sponsor their education and take care of their basic school needs and other expenses. For sustainability, their caregivers should be empowered, engaged in a trade in order for them to make money and feed these children.

“If these children are not healthy, they can’t do the things their age mates do, because they are so fragile. But, if a child is positive but healthy, one may not even know that child is positive, but where the child lacks proper care and attention, it would be obvious, and that makes their peers to run away from them.”

Urgent action

Another challenge for the survival and well-being of such children are the cost of health care in some cases and the depletion of free ARVs and free drugs supplied by donor funding agencies, noted David.

She said, “Clearly, it’s very challenging for people with HIV to buy their drugs, they have to take their drugs and do tests regularly, because one has to measure their lab parameters and those parameters cost money. And although they don’t buy ARVs, donor funds are dwindling. We are still getting drugs for free. Sometimes, some facilities may run out and they may have to buy one or two drugs maybe for a month or two until the stock is replenished.”

David thus called on government to come to their rescue: “If government can take up the donor funds that are dwindling, it would go a long way towards helping them, especially children who are orphans in one way or the other. If for any reasons, the drugs are not free anymore, then it’s going to be disastrous for this nation, because a majority of these people we are looking after cannot afford to buy these drugs, and if they grow up like that with the resistant virus in them, they become more sexually active, and can transmit it to others.

“Therefore, government needs to act now and fight to the end in order to have zero death and illnesses from HIV. If we don’t do something now at the federal, state and local government levels, then in a few years’ time, we may be telling another story, I do hope we do not get to that.”

In the same vein, infectious diseases specialist, Dr. Joseph Onigbinde, called for community action. “In advanced countries, there is what is called positive prevention, where people who are positive are the ones involved in public campaigns against HIV/AIDS. Therefore, the right message has to be passed to them now and they can also pass the right message in future, and not the other way round,” he said.

While Onigbinde said most of these orphaned children may not understand their present health challenges, he said society should support them to live normal lives.

“They should also be counselled that they can still live their normal lives even though they are positive, otherwise the case become worse. Communities and well-to-do individuals in society should rise to their aid, and see how to help them in various ways. Whatever one does for these children, one does for God. These kids who are HIV positive today can become leaders tomorrow,” he said.