Pregnant and HIV Positive

The Daily Beast | December 2, 2013

On Dec. 3, the Elizabeth Glaser Pediatric AIDS Foundation will honor former Secretary of State Hillary Clinton at its 25th anniversary celebration. The organization works globally to stop the spread of mother-to-child HIV transmission, which is passed to 700 babies daily. Its services have so far reached 17 million women. One beneficiary of the preventative treatments is Fortunata Kasege who left her hometown of Dar es Salaam, Tanzania, and arrived in Houston, Texas, as a newlywed pregnant student, unaware she was HIV-positive. Kasege, an educator and ambassador to the Foundation, shares her harrowing and transformative story:

As a 21-year-old I was planning my new life in the U.S. I came here to go to school to become a journalist. I had a lot of excitement because I was also three months pregnant—that’s what made me go to a prenatal clinic as soon as I came here in 1997. It was my first pregnancy, my first baby, and I never went to prenatal care in my country. When I went there that’s when I received shocking news that I tested positive for HIV. I was supposed to be freshman in college and a newlywed—from one extreme to another—I was crushed. The way things were back home there was no good treatment and people were dying. I know some people who died a horrible death from this disease, so when they told me my results I was shocked. I cried a lot. The one thing that got me most was my baby: I knew that my baby would be sick and she would die and I would die also.
Fortunately the people there were very helpful. They told me there was available treatment to prevent transmission to baby, that I was not going to die, I could receive treatment. I almost couldn’t believe it was possible to do that—I didn’t know. I did the treatment right away, and didn’t miss anything. I just wanted to make sure I could at least save the baby. That was my only hope at the time. I don't want this to happen to my baby.
After a few months I give birth to a healthy baby—after years, she’s still tested negative. All this unfolded in front of my eyes—it was unbelievable to me that it was even possible to do that. Now I have a lot of hope and courage to carry on and a lot of hope to prevent the disease.
Florida, my daughter, is 16 years old. She’s so wonderful, she’s full of life, she’s a lovable kid and really good. Thank god she doesn’t give me much stress, but like a typical teen, I'm always a little bit always worried and wonder if I'm doing a good job. She’s determined to go to college, and every time she has an opportunity to speak on behalf of the Elizabeth Glaser Pediatric AIDs Foundation, she’s looking forward to it. She’s the coolest kid, I love her.
I took the diagnosis very hard and after nine years I just decided to give back by getting more involved and give hope to other people. I got through that, I saved my baby and I survived—I wanted to give back to the community. I went to the AIDS center in Houston, and got trained to do advocacy work. I started going out encourage people already infected to take care of themselves, telling mothers that it’s possible to take care of themselves and their kids.
Since 2010, I just have been going around the country doing the different events with the Elizabeth Glaser Pediatric AIDS Foundation, telling my story and sharing the importance of what they’re doing in prevention of mother-to-child transmission. It’s a great organization and it’s giving hope to a lot of mothers in my situation, who say this happened to me but I don't want this to happen to my baby. I’m more than happy to be a part of the work they do by sharing my story, and we are one living example that provided proper treatment you can actually save a baby’s life.
I’m lucky that I was in the right country at the right time to be able to receive assistance. There are still 700 babies born with this disease every day because a mother lacks access or just doesn’t know she’s infected. I really feel so honored and privileged to be the voice and face of what EGPAF is doing in 6,800 sites in 15 countries for mothers—it’s something that works. We have knowledge, we have medication, we have everything that it takes to end pediatric AIDS, we just have to continue to put money toward it and spread the word out there to make it possible to eliminate it. We hope in a couple years we’re talking zero transmission globally. If it happens to us and we’re successful, we can do it for everybody. I think that’s remarkable and I feel great to be part of this organization.
Over the years I’ve been going around to colleges. My daughter usually comes along. We’re looking forward to the next event, honoring former Secretary of State Hillary Clinton for her leadership and courage at the Global Impact Award Gala on December 3. She has an extraordinary legacy in this fight. We’ve been everywhere, we’re having fun also going different places and giving this message. It was supposed to be a tragedy, but this is a good way to turn it around, to spread a message of hope and hopefully have an AIDS-free generation. We still have a lot of advocacy to do: 50 percent born with the disease die before they reach their second birthday.
I’m so grateful to have the opportunity to be a mother to Florida, to watch her go to college. She’s telling me want to go to medical school, to go into obstetrics. I’m really happy to hear that, she’s very serious and very determined. All I do is encourage her.