, MACHAKOS, Kenya, Jul 24 – The five-year-old girl shyly but happily recites her ABCs as she nibbles on a biscuit, without a care in the world – except for the flies that keep hovering around the open wounds on her head.
She tries to swat them away but the annoying insect just won’t leave.
Her head has four sores; some filled with abscess but are slowly healing.
“Her mother brought her here one and a half years ago saying she was old enough to be independent. But she kept falling sick every now and then and I had to take her to hospital. That’s where I was told she was HIV positive,” says her grandmother, Mueni (not her real name), with a heavy tone in her voice.
She’s the right height for a girl her age and her innocence seeps right through her eyes. She keeps throwing an occasional smile at the strangers interviewing her grandmother whom she calls mother.
Her mother abandoned her when she was four in search of greener pastures in Nairobi – where it is believed she works as a house help.
But for Mueni catering for the needs of her grandchild is a taxing affair.
“After she was diagnosed with HIV she was given the first round of drugs which she took for two weeks without any problems. And after completion I went back to the Machakos District Hospital for her second round. But this time she was given very heavy medication which made her skin break, develop rashes and boils and I had to stop the treatment,” she says.
The grandmother who lives in Ulu Settlement in Eastern province adds that she would at times forget to give her grandchild the ARVs – with little knowledge of the consequences.
“Making sure she takes her drugs without fail is not easy. It is also very expensive for me because I have to go all the way to the Machakos District Hospital to get the medication. Sometimes I don’t even have the fare,” she says.
Transport from Machakos town to Ulu and back costs between Sh500 and Sh600. And one needs the services of a ‘boda boda’ from Mombasa Road to the village.
The discontinued treatment coupled with the little girl’s poor eating habits have compromised her immunity even further.
“Although she is now taking her drugs, she still keeps getting ill. She coughs, keeps getting bouts of malaria, low appetite and cankers like the ones she has now,” says Mueni.
She also explains that the girl’s father died a while back forcing her daughter to their ancestral home because the in-laws were too unfriendly.
Mueni admits that she does not have the courage to face her children and tell them about the granddaughter’s HIV status.
“I don’t even know whether her mother has the virus or not and I have been unable to tell her about her daughter. I just can’t tell anyone because I’m afraid they will laugh at me. I would really like to tell my children especially her mum but I can’t,” she sighs.
Mueni who proudly describes her granddaughter as ‘very bright’ also has to live with the fact that she had to withdraw her from school.
She says the strict AIDS treatment regime could not allow her granddaughter to stay in school.
“She used to go to a nursery school and would mingle with the other children but she hasn’t been going because I now have to make sure that she takes her medication on time. You can see she knows how to read but then sometimes it is usually very cold in the morning and sending her to school in that kind of weather makes her cough more,” she explains.
“Often, her school reporting time would clash with the time she was supposed to take her medicine. I would have to give her the medicine at eight o’clock in the morning and eight o’clock at night and she had usually left for school before 8 am.”
If it wasn’t for a volunteer defaulter tracer working with the Machakos District Hospital the little girl’s situation would never have been highlighted.
Sebastian Ndonga who traced her was routinely going through the hospital’s list of patients who require ARVs when he noticed the little girl had been skipping her medication.
“Her clinic attendance was wanting and she had a lot of missing dates on her ARVs; she had not come for her medicines for a whole year and I took it up with the hospital. So the hospital sent me to her home to find her and give her medicine,” he says.
It didn’t stop there.
Ndonga says he had to educate the grandmother on why it would be fatal for her granddaughter to miss treatment. He says initially the grandmother out of ignorance isolated the little girl for fear of contracting the virus.
“She (Mueni) had set aside a plate and cup for her and no one would eat from those utensils. But I spoke to her and told her that there was no point in cutting her off from the rest of the family. I also advised her to go back to hospital and tell the doctors about the adverse side effects the ARVs had on her grandchild,” he says.
Further, Ndonga says getting to the remote village was no mean task because of the economic constraints and that emotional disappointments also get in the way.
“Sometimes I go to people’s homesteads only to find that the person I am looking for passed on. And that is usually very hard to contend with,” he says.
But the hope of finding a survivor and seeing them regain their health gives Ndonga the strength to journey on.
“Even though by the time I was tracing her she was already in stage IV and not in good shape, she has really improved. She has even increased weight. I spoke to her grandmother about the opportunistic infections that attack a person’s body when they stop taking their medication as scheduled,” he says.
Mueni also admits that the educational tips she got at the hospital really helped her. The fear of contracting the virus through touch wore off.
“I can now bathe her without fear although I have to use antiseptics and wear gloves because of the open wounds,” she says with a smile.
HIV patients are usually advised to adhere to their ARV prescriptions and well balanced meals.
Machakos District AIDS and STIs Coordinator Dr Nicolas Muindi explains that although most HIV positive persons abandon their ARVs because of the side effects and poverty this only makes their condition worse.
“If you were in Stage I when you first got tested then it is important to remain in that stage because if for instance you go to Stage II or III, the treatment will be changed and when it does there is no reassurance that it will succeed,” he says.
The District Nutrition Officer in Machakos, Francis Mutinda also says HIV is something someone can live with; as long as they honor their treatment and eat well.
“Some ARVs react harshly with alcohol and cigarettes which puts someone’s health at risk. For example a simple meal like githeri is very nutritious and balanced for anyone. And then maybe in the course of the week someone can take protein from an animal source just to bring in the nutritional diversity,” he says.
With the specialists’ wise counsel and encouragement, hope springs eternal but as long as Mueni makes sure that her granddaughter keeps up with her ARV treatment and eats balanced meals.
Having HIV/AIDS is not necessarily a death sentence – it can be managed. One can lead a full and healthy life provided they accept their condition, take their medication, eat and live healthy.