Be the Generation to End Paediatric AIDS in Africa

Last fall, we introduced you to Babalwa Mbono, a South Africa-based mothers2mothers (m2m) employee, and her teenage daughter, Anathi, who were in New York for United Nations General Assembly gatherings. Right now, they are on Capitol Hill in Washington DC being featured at an event celebrating 15 years of the U.S. President's Emergency Plan for AIDS Relief (PEPFAR). Babalwa tells her story here.

“When I was eight months pregnant with my second child, Anathi, I learned I was HIV-positive during a routine test. I went into shock.

I kept asking the counselor at the clinic if she was sure; I wanted to believe it was some cruel joke. I looked and felt perfectly healthy, unlike my older sister, who had died of AIDS-related tuberculosis several years earlier.

I went home and angrily confronted my husband. He denied he’d infected me, but I made him go straight to the clinic, where he, too, tested positive. He was deeply ashamed, and kept apologizing, but I was furious.

I kept picturing my sister, so weak and emaciated, at the end of her life. I worried that my baby would be born with HIV, and that I wouldn’t live long enough to care for him or her. I felt lost and afraid, with no idea what to do.

That’s when my counselor told me about mothers2mothers, which she described as a support group for women who were HIV-positive. I was connected with a Mentor Mother, a local mom living with HIV who had been trained as a front-line healthcare worker. She reassured me that my diagnosis was not necessarily a death sentence for either me or my baby. She also told me about antiretroviral treatments (ARVs) that would greatly reduce the chances of me transmitting HIV to my baby during my pregnancy.

There was another pregnant mother in my support group, and having someone else to voice my fears to was very helpful because my husband was still in denial and wouldn’t talk about it. I began to feel empowered—like I was finally in control of my life after months of feeling like a victim.

Still, I was terrified when I went into labor. The happiest moment of my life had been giving birth to my first child, but when I delivered Anathi and held her in my arms, all I could think of was whether or not she was HIV-positive.

She was tested at birth and periodically for months afterward, but we could not definitely rule out infection until she was 9 months old. Those first few months of her life weren’t spent celebrating her first smile, the first time she sat up or the first time she crawled. I was literally living in fear.

I also wasn’t able to breastfeed her, like I did my son, because of concerns about HIV transmission, and I felt guilty about that. Thankfully, I had the other women in mothers2Mmthers, a whole new community of sisters who understood what I was going through.

When I learned Anathi was HIV-negative, they were the first people I told.

I was so grateful that I had mothers2mothers in my life that I agreed to become a Mentor Mother.

I wanted to give back to a group that had given me so much. It was empowering for them, but also for me. It was also a great opportunity to work in a healthcare environment in which I could learn more about some of the research and treatments for HIV.

Thankfully, I remained asymptomatic for eight years until 2010, when I went on antiretroviral medications and was able to get the disease under control. My doctors are optimistic I’ll live a full, long life. My husband went on antiretroviral medications in 2005 and is doing great.

It’s been nothing short of miraculous that I’ve been able to see my babies become teenagers. I told Anathi that I was HIV-positive last year, when she was 13. It’s very difficult to disclose this type of information to your child. I worried about how she would take it. I could tell she was shocked and upset, but I reassured her that I was still in good health and that she wasn’t infected.

But now that she’s a teenager, I’m faced with the challenge of letting her out into the world. Her friends are starting to have sex, and some are pregnant and a few even have HIV. I’ve made sure we talk openly about HIV at home, and I’ve made it quite clear to Anathi that while I feel she’s too young for sex, if she does decide to have it, she needs to insist that her partner wear a condom.

It’s not easy for any parent to have these conversations, but it’s important, since we can’t be with our children 24/7. We need to give them the tools to make their own informed decisions.

Over the last 14 years I’ve gone from counseling other women on HIV and family planning to training other mentors and seeing them go on to have fulfilling careers as nurses and social workers.

Almost 99% of babies in mothers2mothers’ South Africa programme test negative for HIV, and that makes me thrilled. I feel like I’ve done my job. I’ve watched countless pregnant women break down when they tell me they have HIV—and then helped build them back up.

These mothers face so many challenges, yet they all come back for follow-up visits proud and determined. And I’m determined to always be there for them."