My View

HIV-Positive, Pregnant Immigrant Mom Speaks Out

Once frightened and ashamed, she wants the world to know that HIV-positive women can deliver healthy children and have families.

Fortunata Kasege (right) and her daughter Florida Mwesiga (left).
National Journal
Fortunata Kasege
May 9, 2014, 1 a.m.

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. 


Are you part of the demo­graph­ic that is the Next Amer­ica? Are you a cata­lyst who fosters change for the next gen­er­a­tion? Or do you know someone who is? The Next Amer­ica wel­comes first-per­son per­spect­ives from act­iv­ists, thought lead­ers, and people rep­res­ent­at­ive of a di­verse na­tion. Email Jan­ell Ross at jross@na­tion­al­journ­ And please fol­low us on Twit­ter and Face­book.

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