Do you know what it’s like to lose a part of yourself? Farah, Egypt

© Gemma Taylor for Frontline AIDS
“I always dreamed of having a girl,” says Farah, 39.

“I always dreamed of having a girl,” says Farah, 39.

Farah was pregnant with her third child at the age of 26. “I had two lovely boys already, so when she was born I was so excited.”

Her contentment was cut short. “The trouble started after just one week. She was always sick and had diarrhoea.” For the next eight months, Farah’s daughter went through numerous tests. “She kept being prescribed stronger and stronger antibiotics, yet she was getting weaker, I think some of it made her worse,” says Farah. “My baby was so ill, and so small. At eight months old she still barely moved.”

At a specialist children’s hospital a nurse sent off for an HIV test. “HIV was unknown to us, so it took time for anyone to consider this.”

When the test came back positive, instead of then receiving the right care, Farah had to leave the hospital. “We were seen as a ‘hopeless case’.”

“I had to go back home. Every day she was in my arms and every day she was getting worse. I want you to think how painful that was for me, as a mother, to watch her die in my arms.”

She looks you straight in the eye: “Really, I want you to, please, stop and really imagine for a moment: What do you think it felt like to hold my daughter and see her take her last breath? See her spirit leave her body? Do you know what it is like to lose a part of yourself?”

Being on the HIV frontline is losing a daughter and coming back stronger

“Until that moment I didn’t know I was living with HIV,” says Farah. HIV testing is low in Egypt, it’s estimated that almost half of people living with HIV are unaware of their status. It’s not uncommon for people, in the same way as Farah, to only find out that they require treatment when a spouse or child is dying.

HIV is viewed as “something that comes from outside of marriage, or from behaviours that are haram (forbidden), so if it doesn’t apply to you why would you test?,” she asks, hypothetically. “I didn’t think to ask my husband for an HIV test and anyway I wouldn’t have been able to.”

“I married at 18. It was imposed on me. It was a very old-fashioned marriage, he was 33 and my older cousin, almost like an uncle. Refusing marriage just wasn’t an option, my father had to accept his brother’s offer.”

“How did I feel on my wedding day?” Farah takes a deep intake of breath. “I was afraid. He was like a father to me, a father I was afraid of.”

Seven years into her forced marriage, Farah was a bereaved mother and worried about what HIV meant for the rest of her family.

“The whole family tested after we checked out of the hospital. My two boys were OK and I thank God for that. I knew it would come back positive for myself and my husband.”

“My husband refused to take medication. He was in denial. I was the opposite, and I started my journey of treatment.”

History repeating?

“A year later I fell pregnant again, oh my goodness. Initially I wanted to get rid of the baby as I didn’t want another child to suffer. However, I was told about prevention of parent-to-child transmission (PPTCT) and I was convinced to continue. The advice included delivering by caesarean section.”

Farah went into labour early. “I was so worried… The nurses insisted on a natural birth and I couldn’t tell them I was living with HIV,” recalls Farah, her breath quickening. “I had to lie in order to try and deliver my baby safely. I had no option. If I said I am HIV positive, I would be kicked out of the hospital.”

Experiencing the height of fear at the height of labour, Farah told the nurses she had hepatitis C so that they would take precautions but still deliver. “Still they insisted. I was panicking. Then they discovered that the baby was not in the right position so there was no choice other than to perform a caesarean – thank God!”

“When she was born, I looked down and she looked exactly like her sister. A double. It was incredible.”

“The resemblance made me feel like I was being given a second chance. It made me stronger than ever.”

A decade later: It’s still happening

Farah’s husband died soon after her second daughter was born, nearly 10 years after they married. “It was a huge responsibility bringing up three children. But being married to him was a tragedy.”

Some people think HIV makes you more vulnerable or weak, but for me my experiences made me stronger and much more able to deal with things, and have more empathy for others.

“My daughter is HIV-free and she’s 11 now,” Farah beams. “The boys are 18 and 19, and they are all studying.”

“What I went through is still happening to others. That’s why I work with women living with HIV and their children. Every mother with an HIV-positive child wants to feel safe in the knowledge that she will not lose her child.”

Farah is a leader with MENA-Rosa, the first regional association dedicated to women affected by HIV in the Middle East and North Africa. She advises on PPTCT and accompanies women in labour when they are delivering their babies. “I also work with a group of children living with HIV. When we have the funds we take them on excursions, so they can enjoy themselves without any worries, even for a day.”

“The support I received made me stronger. When I hear the others speak, I feel that my problems are much less than theirs.” It’s hard to imagine experiences much more harrowing or painful, but Farah is clear that, as other women have helped her to get to her present state of mind, she can do the same for others.

“Each of us has a sub-group. I give my knowledge to new members, people who have just found out their HIV status. It started like a small circle, but in time each new member starts their circle, each circle links to another and it gets bigger.” She has a spark, an engaging way of speaking, you can see that she’s able to offer reassuring and encouraging support.

No more bereaved mothers

Farah remarried about a year ago. “He is completely different. We support each other with love.”

“We are both living with HIV. We live a very normal life, the only thing is we take our treatment daily. People living with HIV don’t want to be treated in a special way, just in a good way. We want a decent life. We want to feel secure. We don’t want to lose any more children.”

Under the ‘Sustainability of HIV Services for Key Populations in the Middle East and North Africa Region’ programme, Frontline AIDS will work in Egypt  – together with its partners Caritas, El Nour and Freedom – to help people living with HIV know their rights and understand, and adhere to, their treatment.

A key part of the work will be workshops for health care professionals and lawyers to address reproductive health and rights, and to tackle stigma and discrimination.

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EgyptGenderGender-based violenceHuman rightsMENA