Surviving stigma against all odds
Despite all these problems, she is happy and grateful that her daughter has survived and is now a healthy 17-year-old who fully understands her need for medication.
Vuyisile Mkhwanazi, who was herself only 13 and HIV positive when she gave birth, said her daughter was only properly diagnosed with HIV at age seven but has managed to celebrate another 10 birthdays since then.
Mkhwanazi said the parenting journey she has been on has been difficult. “I still recall the day I was diagnosed with HIV. I was just 13 years old. Bear in mind, this happened not long after I had found out I was pregnant. I went to my local clinic (Msogwaba clinic) to start the antenatal classes. Some tests were taken, including HIV, and the result came back positive. Like many people, I didn’t understand what HIV was and had only heard the myths that said if you have HIV and you are pregnant your baby will die soon after birth and then a few weeks later you die as well,” Mkhwanazi said.
“I was immediately put on PMTCT (Prevention Mother to Child Transmission) which was dual therapy back then. At seven months I was given a single dose NVP (Nevirapine) to take when labour started and AZT (Zidovudine) when I gave birth. But I failed to adhere on the ARV therapy.”
Positive at birth
The baby tested HIV positive at birth. Mkhwanazi was instructed to give Nevaripine syrup to her baby for 28 days and to stick to formula feeds. But there were times when she ran out of milk formula and would breastfeed the baby against the advice of her healthcare worker.
“I allowed the myth and my family influence to determine our health. I recall my grandmother saying the clinic made a mistake about the diagnosis, and that my baby and I were sick because I refused to drink traditional medicine while I was pregnant. She said I could still reverse the sickness if I take traditional medicine. Because I trusted her I stopped taking the ARVs and giving the medicine to my baby,” Mkhwanazi said.
The situation grew worse due to the mixed feeding, her failure to take her ARV therapy and then taking traditional medicine. This caused complications, bad diarrhoea and so six weeks after giving birth, she was given more medicine.
“Because my family and I were in-denial about the virus, every time my daughter was sick we took her to a different clinic because we were hoping that they will give us a different diagnosis. At age six my daughter became seriously ill and people started telling me she had AIDS because of the swollen lymph nodes she had and the fact that she didn’t gain weight. A woman from Simunye Home Base Care visited my home and said if I didn’t take my child to my local clinic we might lose her because she had developed opportunistic infections. The next morning I took her to the clinic where I had started because they had the file with her whole medical history.”
“Again I was told by the healthcare worker that my child had opportunistic infections. Tests were done, including TB which came back positive – meaning that she was core infected with TB. She was put on TB medicine which she successfully completed and was also told to continue with ARV therapy,” said Mkhwanazi.
Professional nurse Sister Fikile Lorraine Simelane said “It is important to every healthcare worker to find out the level of understanding about HIV, ARVs, adherence and positive lifestyle before initiating patients on ARV therapy. If they don’t do this there is a risk that the patient will end up defaulting or mixing ARVs with traditional medicine. A lack of family support, acceptance and stigma and discrimination are the biggest influences that cause patients to default. And as much as it’s the healthcare worker’s responsibility to give the right information about the virus, it’s also the patients’ responsibility to ask.”
“Because of my child’s illness, we were discriminated against and stigmatized. Some parents refused to allow their kids to play with my daughter and she was isolated. Some even told us she will not survive the illness. But advice from a TAC (Treatment Action Campaign) member and with my family’s support, I began to have a positive mindset. I finally understood that being HIV positive is not the end of the world.”
Mkhwanazi said her daughter would often ask why she was sick and had to take medicine. She decided to be honest with the girl about her HIV status and explained to her the importance of adhering to her ARV treatment.
“Now we are treatment buddies and support to each other. We remind each other to take our medicine because defaulting is not an option.”
HIV and AIDS lay counsellor Bheki Khumalo said parents should not avoid telling their children about their HIV status. “You will be surprised because kids are learning about HIV in school, so please make the right decision,” he said.
Mkhwanazi said her daughter is now 17 years old, following a healthy lifestyle and adhering to her treatment. “She’s in grade 12 now she doesn’t even need me to go with her when she has to pick-up her ARVs. I am so proud of her.” – Health-e News.
An edited version of this piece was published by Health24.