The following is a guest blog post from Florence-Ngobeni Allen. She is an HIV/AIDS educator and counselor, and a long-time Ambassador for The Elizabeth Glaser Pediatric Aids Foundation. She lives in Johannesburg, South Africa.
Fighting a mother’s fight against HIV has been a very significant part of my life.
I have worked as an HIV educator for more than a decade, counseling thousands of women in South Africa who have struggled with loss, stigma, and illness because of this epidemic.
As an Ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, I have fought for mothers around the world to have access to the tools and support they need to keep their children healthy and HIV-free.
And I have fought my own, personal battle with HIV for more than 15 years.
I first worked as a counselor at Chris Hani Baragwanath Hospital in Soweto, South Africa, helping new mothers who tested positive for HIV. I discovered that my story was not that different from the women I met there.
A lot of the mothers could not afford HIV medicines and services for themselves or their babies. Some would report that they had not eaten for days. Others talked about feeling scared to disclose their HIV status to their partners for fear of violence. Too many of these women came to our clinic with bruises on their arms, their backs, and their hearts.
Every day, I was surrounded by the cries of babies who were fighting the effects of HIV, and mothers who were trying to care for them and keep them alive.
These experiences were so traumatizing for me. To get through the toughest moments, I would lock myself in the bathroom and cry. At that time, there were no treatment options available for HIV-positive mothers or their babies in South Africa.
I knew what was next for them. I knew that their babies were going to die.
The reason I knew is that I had experienced the same thing. I lost my beautiful baby girl, Nomthunzi, to AIDS when she was only five months old.
Nomthunzi was born with no complications to her proud parents. She was just a few weeks old when my husband grew ill. He passed away three months later.
Shortly after, Nomthunzi got sick as well. I brought her in for HIV testing, where I received the worst news a mother can hear. I learned that I was HIV-positive, and I had unknowingly passed the virus on to my baby. Nomthunzi passed away just a few weeks later.
When I became an HIV counselor, I knew the pain these new mothers were experiencing. The pain of losing a child is unbearable. But the pain of realizing that there is nothing you can do to save your child is equally intolerable.
The only comfort I could offer these women, and myself, was a community of shared experiences. I told my personal story to show them they were not alone. I showed them that I survived, and that they could too.
It was in my role as a counselor that I took a vow to fight for other mothers. I became an advocate, waking up my community and the world to the harsh realities of so many mothers facing HIV/AIDS.
Today, because of the work of organizations like the Elizabeth Glaser Pediatric AIDS Foundation, committed leaders, and advocates and mothers like me, things have changed. We have expanded access to HIV prevention and treatment in South Africa and throughout the world.
Now, there is a new emotion experienced by mothers living with HIV – hope. With services to prevent mother-to-child transmission of HIV (PMTCT), we can reduce the risk that a mother passes HIV on to her baby to less than 5 percent.
And while that is promising, we can’t stop there. Too many women, especially those living in sub-Saharan Africa, still lack information about HIV and access to PMTCT.
Together, we can help these women. We can encourage them to understand their reproductive rights. We can demand that they receive quality health care services in their communities. We can empower them with the knowledge and tools to prevent the transmission of HIV to their children.
My daughter is not going to come back, but knowing that we are saving more and more mothers and children makes me happy.
Today, I am the proud mother of two HIV-negative boys. My children are alive and thriving because I was empowered in the fight against HIV.
I was reminded of that as I sat down to write this. In the room next to me, I could hear my two sons taking a bath with their father. I listened to the splashing water and screams of laughter, and knew it was the beautiful sound of healthy children having fun.
Every mother deserves to experience that same joy.
And if we all fight the way mothers fight for their children, we can make that a reality.