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Living with HIV: Caroline's story

Caroline inspecting the maize in her kitchen garden.
Caroline inspecting the maize in her kitchen garden.

Akumu Caroline was born in Uganda in December 1972, and raised in a family of six girls and two boys. Today, a single mother, she’s raising her three-year-old daughter as well as caring for her two brothers, aged 18 and 16. Caroline has been a teacher for the last 10 years and is currently pursuing a diploma in primary education. Here is her story:


The discovery

Caroline first discovered she had HIV in 1996. Plagued by a persistent cough and poor health, she initially thought she had a cold. But treatment after treatment failed to improve her cough, or her health. After a trip to the local clinic revealed that she had Tuberculosis (TB), Caroline believed the cause of her problems had been found. Not so. Shortly after treatment for TB, Caroline’s health again took a turn for the worse.

Finally, convinced by family and friends (and by her own failing health), Caroline volunteered to take an HIV test. But not for a second did she actually think that the cause of her cough might be more serious than a cold, or even TB.

When the results came back positive, Caroline was devastated. She thought it the end of her world and, for a long time, refused to accept the results. With the support of her friends, however, continued counseling and the help of TASO (The AIDS Support Organization)—a local non-governmental organization that provides care and support to people living with HIV/AIDS—Caroline eventually gained back her sense of self.


Making the big decision

In 2002, after much counseling, Caroline and her spouse decided to have a baby. Initially, they were worried about Caroline passing on her HIV status, but then they heard about PMTCT+ (Prevention of Mother to Child Transmission-Plus) over the local radio.

Caroline and her spouse traveled to the Mukuju health center in Tororo where they spoke with health staff and learned about PMTCT+:

PMTCT+ is a program that aims to improve the quality of lives of women, men and children living and affected by HIV/AIDS through services integrated into existing reproductive health programs. Pregnant women, such as Caroline, who seek antenatal care receive group counseling about HIV/AIDS from a qualified health worker. HIV positive pregnant women are referred to a midwife trained on PMTCT+ for more counseling and health education on vertical transmission.

At 32 weeks gestation, pregnant mothers who have consented are given a Nevirapine tablet and instructed to swallow it on the onset of labor. Following recommendations from the Ministry of Health and the World Health Organization, the practice has now shifted to AZT+3TC combinations.

Babies born to HIV-positive women are also given a single dose of Nevirapine syrup within 72 hours of birth and AZT for one week. To determine the sero-status of infants born to HIV-postive mothers, DNA-PCR is done on children at three months and six months of age. With more knowledge, and more support, Caroline began to feel better about the decision to have a child.

But then Caroline’s labor began early. Too far from Mukuju health center to make it in time, she took her Nevirapine tablet and headed to the nearby government-supported health center for care. Immediately discriminated against because of her HIV status, Caroline was fortunate that the Mukuju health staff happened to pass by the facility during this time. They took Caroline back to Mukuju, where she delivered safely.

Not only did the Mukuju health staff help Caroline deliver safely, they also made sure that her newborn daughter received her dose of Nevirapine. The staff wanted Caroline’s daughter to be HIV-negative as much as Caroline did.

Caroline also made the informed decision to exclusively breast feed for the first three months, and then introduce replacement feeding.


A brighter future

After six months, Caroline took her baby for an HIV test. The results showed that the baby was HIV negative! Caroline was proud. After another six months, Caroline had her baby tested again. Again the results were negative!

Today, Caroline continues to seek medical care for herself and the baby from the Mukuju project. Some of the services that she easily accesses through the program include CD4 cell count, treatment of opportunistic infections and counseling.

When asked why she chose to receive services from the Mukuju Center and not the two hospitals she bypasses on the way to Mukuju, Caroline replied that:


"The health staff at Mukuju are good. They freely talk, sit and chat with clients. The waiting time at the facility is short, taking about 30 minutes. They are friendly and have a heart for people living with HIV/AIDS. Being seen by a doctor is a normal thing unlike other health centers. They also give all the drugs prescribed."


To Caroline, seeking and receiving regular medical care supported by good home care and support is a key to life. Receiving drugs (ARVs) is not enough, good nutrition alone is also not enough. They can only work best with a supportive home environment that accommodates acceptance.