I will never forget walking through the iron gates of the Raphael Centre HIV resource facility in Grahamstown. Birds of Paradise blossoms framed the walkway and the outside walls of the building were covered with HIV-awareness graffiti and handprints. There were flowers, garden beds and color everywhere. I felt positive I’d find the story I wanted.
I was looking for a subject to illustrate the hardships of mothers with HIV in South Africa who are clients of public health care. I’d heard stories of forced sterilization methods being practiced in the Western Cape, but had not found examples of this in the Eastern Cape. What I did find, however, were stories of hope and tragedy told within the Raphael Centre itself.
The Raphael Centre is an HIV counseling and community outreach organization that helps HIV-status residents by offering education, counseling and life-enrichment programs for free. Many of the volunteers and employees at the center are HIV positive and share their experiences to help others in similar situations.
Ntuthu, an HIV positive mother with an HIV negative 5-year old daughter, led me into her office and asked what she could do for me. I explained that I was interested in using her story as an example of how women with HIV can exercise reproductive rights without the fear of transferring the virus to their baby. She was quiet and listened while I explained who I was and how impressed I was by her motivation to educate herself and others about preventative mother-to-child-transfer methods. I told her I thought she was a symbol of hope for other South African women and I wanted to tell her story. That’s when she looked up at me, and I knew my time to speak was over.
I felt like I was being scolded. She looked me in the eye and told me that there was nothing more important to her than her daughter and she would do everything in her power to protect her. She continued to say that her daughter is only five and is not aware of her mother’s HIV status and she would like to keep it that way until she is old enough to comprehend what it means. I told her I understood and she continued. She explained to me that she would not risk the chance of her daughter being ostracized by her friends and peers because of her mother’s HIV status. I agreed not to involve her daughter in the story or film her with her child in order to respect her wishes. She nodded and stood up, signaling me to follow her into the conference room to meet with her boss, Jabu, to make sure she would okay the story.
What happened after that forever changed me. I sat with Jabu and Ntuthu at a conference table and explained why I wanted to work with the Raphael Centre to produce stories about HIV, but that I was very interested in working with Ntuthu specifically. Ntuthu sat with her head down listening—her arms folded on the table. She barely spoke a word for the next hour while Jabu told me many stories about clients who come through their center, but she was most enthusiastic about praising Ntuthu for the positive example she sets in their community.
Jabu explained that there are many things wrong with the way the government of South Africa has handled HIV since democracy was established and that women are suffering most for it. She explained that the Raphael Centre is designed to offer the time and resources the public clinics can’t. One person at a public clinic may be given up to 15 minutes of counseling upon learning their HIV status before he or she is pushed out the door to serve the next patient. The demand is too high and the resources are too few.
The problem can’t be solved unless more programs like those offered at the Raphael Centre are made available to the people who need them. Jabu told me that that is why Ntuthu is so important in their organization. She took it upon herself to find the information she needed to ensure her child would not contract the virus and she applied that education to the work she does now. Along with the rest of the staff she gives each individual the time he or she needs.
The consequences of the government structure for public health care affect everyone, but especially HIV status women. Women who aren’t properly educated and counseled about mother-to-child transferal prevention methods have a high risk of having an HIV-positive baby and are thus discouraged from having children at all. When Ntuthu told her public healthcare providers she wanted to be a mother they told her, “You can’t.” She told me that it wasn’t an acceptable answer, and she found the resources she needed to have a healthy baby.
She explained that giving birth to an HIV negative child is possible if the right measures are taken. The virus can be transmitted during pregnancy, labor and delivery or through breastfeeding. However, women with advanced stages of HIV can take antiretroviral medications (ARVs) each day to keep the viral load at a manageable level and to stay healthy. While pregnant, Ntuthu continued to take her ARV’s and opted to use formula milk instead of breastfeeding to ensure her daughter would not contract the virus. She and Jabu explained that mothers who choose to breastfeed for the first six months of the infant’s life have about a two percent chance of infecting the child, but if a mother feeds her baby formula milk the chances decrease to zero percent.
The speech she’d given me in her office earlier made complete sense to me. She had fought so hard to become a mother, and even harder to be a mother to a happy healthy child. I understood. I would do the exact same thing. It was at that point that I spoke candidly with the two of them. I told Ntuthu why her story was so important to me and that I hoped she would understand why I felt it needed to be shared with the world. I told her the story of my own mother’s sacrifices for my life as a child and that, while she is no longer with me, I feel compelled to find other women like her who can share hope with other women in similar situations. She nodded and agreed to tell her story.
I spent the next few days with her. I had very little time to spend, but I gave what I could in the hopes I could come back again in the coming year to continue what I’d started with her help. Within those days I came to understand more about life than I had in my 27 years up to that point. Ntuthu came through so much, but she came out on top, and she’s staying there.