Positive actions, negative lab results

Nesma’s story illustrates both the worst and the best of possible outcomes for mothers and people living with HIV in Egypt

Dalia Younis
A technician collects blood sample from an infant to conduct PCR test in Yala Sub-County Hospital in Kenya.
UNICEF/Kenya 2016/Shehzad Noorani
26 December 2018

“Her health started deteriorating after a week of birth,” Nesma said, referring to her daughter, but “nobody knew what was wrong.” Until her baby girl was nine months old, Nesma (not her real name) and her husband, residents of Cairo, Egypt, did not know they were living with HIV and that the virus had passed to their daughter. An HIV test was suggested as an attempt to explain the reason for their baby’s poor health, and the result came back as positive.

Unfortunately, the news did not save their daughter’s life. “When health care professionals knew she was HIV-positive, nobody dared to even insert a needle in her tiny arm to save her life”, Nesma said, remembering the struggle. The baby lost her life because of pneumonia days after her parents’ failure to find a hospital that would agree to admit and treat her. According to Nesma, she, her husband and her ailing daughter were literally kicked out of different hospitals because of the stigma and fear around HIV.

As the days of mourning passed, the parents were concerned about their other two children. They had them tested for HIV, and both tests were negative. Nesma decided to tell them that she and their father were living with HIV just in case something happened. “I wanted them to know exactly what to do or where to seek help in case their father or I got sick. I didn’t want them to go through what I went through with their late sister.”

Months after their baby’s death, the couple found out that Nesma was pregnant again. The situation was much different from what they went through previously. “It was unplanned and I decided I would have an abortion,” Nesma said. But then she remembered that she had other options: during the counselling I received after learning I was pregnant, I was told about precautions I could take so the chances of HIV transmission to my baby would be minimal”, Nesma said.

Also, during one of her monthly follow-up visits to the hospital and pharmacy, she was advised to seek help and receive support from Nusoor (‘Eagles’), a network of people living with HIV in Egypt. She decided to proceed with her pregnancy and the advice received from the network was helpful. She strictly followed the suggestions and information, including about the importance of regularly taking her HIV drugs and not missing any pregnancy follow-up visits.

The due date was approaching, and Nesma had a hard choice to make: whether or not to tell her obstetrician that she had HIV.Based on her previous experience with HIV-related stigma, she decided not to disclose the nature of her disease. “I told my doctor I had Hepatitis C instead of HIV,” Nesma said, adding, “I wanted him to take all of his highest infection-control precautions and stay safe while getting my baby safely delivered.”

When Nesma realised a few weeks later she had delivered an HIV-negative baby girl, it was hard to believe, especially for a mother who had recently experienced the painful loss of a child. Nesma said that she re-tested her daughter several times until she turned two years old before she, finally, found relief. 

Nesma’s story illustrates both the worst and the best of possible outcomes for mothers and people living with HIV in Egypt. Many mothers struggle to find health care services in general – or critical HIV-specific services such as testing, care, support and treatment – because of persistent stigma. As a result, most vulnerable individuals are not tested early enough.

Furthermore, stigma and other challenges, including lack of treatment knowledge and support, contribute to many individuals’ difficulty in staying in effective HIV care. The percentage of adults and children on treatment who achieved viral suppression (meaning that the disease is controlled) was only 43 per cent in Egypt in 2016.