Fortunata Kasege, 39, lives in New York City with her 17-year-old daughter. She serves as an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), helping to support the organization’s mission to ensure that no child must live with or die of AIDS.
Kasege is part of one the country’s fastest-growing and highly-educated immigrant groups—migrants from the African continent. She is also a woman living with HIV. Kasege expects to deliver her second, HIV-negative daughter this summer.
Just before Mother’s Day, Kasege shared her own experience as an HIV-positive mother and what infected individuals need to know about their reproductive options with The Next America.
Almost six months into my second pregnancy, I am frequently asked the same question: “You are living with HIV and you are pregnant — aren’t you worried that your baby will be born with AIDS?”
Thankfully, the answer is a very confident “no.”
But that was not always the case. I found out I was living with HIV in 1997 when I was almost six months pregnant with my first daughter. As a newlywed and a recent immigrant to the United States, the news was devastating. I arrived in Houston, Texas with my new husband and new hope for the future. Quickly, the latter was gone.
My home country of Tanzania was at the epicenter of the AIDS epidemic in Africa. By 1997, nearly 9 percent of the country’s entire population was infected with HIV/AIDS, a figure that meets the U.N.’s criteria for a “high” disease burden. I had seen friends’ lives change almost overnight. In Dar es Salaam, the country’s biggest city and a place I had previously called home, an HIV-positive diagnosis made a person untouchable. People would shut themselves inside their homes and just waste away due to their shame and fear. I was sure that my baby and I would suffer the same fate.
I was terrified.
At that time, doctors in the United States had only recently begun to administer azidothymidine, known as AZT, to help prevent pregnant women living with HIV from transmitting the virus to their babies. At first, I was very skeptical. In Tanzania, many doctors and nurses tried to comfort patients by telling them medications could help them live longer, but inevitably they all died of AIDS or related complications. I thought my nurses and doctors in the United States were simply doing the same.
One thing was clear. In 1997, prevention of mother-to-child transmission services, often called PMTCT, were still new. Even my own health-care providers in the United States knew very little about HIV/AIDS and how to keep mothers from passing the virus on to their babies.
One doctor inquired about my sexual history. She seemed shocked to learn I only had two partners in my life, including my husband, even though it only takes one sexual encounter to contract HIV. Then, as I was preparing to give birth, a medical student who was observing my case to learn more about PMTCT, asked me if I felt guilty because I was HIV-positive and having a baby.
I did feel guilty. I didn’t know my status when I become pregnant. At that time, my diagnosis was very new to me. I didn’t know what to say or how to react.
It wasn’t until my daughter, Florida, was born HIV-free that I finally realized that I didn’t have to give in to fear and despair. I could choose to fight, despite that fact that my doctors were telling me that I probably wouldn’t live to see Florida’s tenth birthday.
I was afraid to tell anyone about my status. I even kept it a secret from my parents until Florida was almost six months old. I didn’t want my parents worrying that I would die of AIDS far away from home.
My husband and I also kept my status a secret from our friends in Houston. We would dodge questions about why I had to go to the doctor so often or why I wasn’t feeling well. I felt very isolated and very alone.
But knowing that Florida was healthy inspired and empowered me. I wanted to live to see her grow up, so I committed myself to staying healthy. I adhere to treatment, eat right, exercise, and see my doctor regularly.
But medication alone isn’t enough to keep anyone alive. You need emotional support, comfort, and love. I realized that I wanted to give that to other people living with HIV. This is why I enrolled in HIV advocacy training to become a mentor and community educator. Later I became an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation.
I was working to improve the public’s understanding of pediatric HIV/AIDS, but at the same time, I was facing difficulties at home. Eventually, my husband left me because he wanted to have more children. Despite the fact that Florida was HIV-negative, he didn’t believe he could have a future with us. As a young woman, that possibility tortured me. I, too, thought my chances of having another baby were over.
I received great fulfillment parenting Florida and from my role as an advocate and counselor, but I couldn’t let go of my dream to have another child — a sibling for my daughter and another baby for me to love. Today, after almost ten years of self-reflection and searching, I have the right partner to take that journey with me.
I am expecting my daughter in July. Like any proud mother-to-be, I’ve been chronicling my pregnancy on Facebook and I have gotten so many messages of support, and excitement. In 1997 I would have been ashamed to share my story, but today I am proud to speak out, proud to be the new face of HIV.
I also continue to face questions, confused looks, and genuine concern from many people who don’t know the facts. I’m a strong believer that we must change this. We have learned so much about this epidemic since my first pregnancy in 1997. People living with HIV now have many options when it comes to deciding to have a family. HIV-positive and HIV-discordant couples—relationships that include one HIV-positive and one HIV-negative partner—can adopt, make use of sperm or egg donations or other assisted reproductive technologies, and even have a baby the “old-fashioned way.” Whatever they choose, the important thing is that now they have a choice.
The biggest difference between my first pregnancy and my second is that today, I am not scared. This time, I know my baby will be healthy because I am committed to it and have access to the right medical care. Pediatric HIV is preventable and I am here today as proof that anyone living with HIV can have a family.
Perhaps more importantly, pediatric HIV has been virtually eliminated in the Europe and North America. Fewer than 200 children living in the United States were infected with HIV in 2012, according to the Joint United Nations Program on HIV/AIDS. However, globally, 700 babies are infected with HIV every single day because their moms lack access to lifesaving PMTCT services. Almost all of the children who are newly infected with HIV contract the virus from their moms during pregnancy, childbirth, or through breastfeeding. That is why I am working with the Elizabeth Glaser Pediatric AIDS Foundation. I want to see the number of children infected with HIV worldwide decline to zero.
The Elizabeth Glaser Pediatric AIDS Foundation, its partners, and other organizations are helping millions of women around the world access the family planning tools and medications they need to ensure that no child has to be born with AIDS. I made a personal choice to have another baby and I want others to know that what was surely a death sentence for both mother and baby less than two decades ago has been transformed. We have a choice. Our dreams of becoming mothers can come true.
Fortunata Kasege serves as an Elizabeth Glaser Pediatric Aids Foundation (EGPAF) ambassador.
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