‘I’m HIV positive but have negative daughters’

Four-year-old Julie* threw the curtain open and ran into her house with a beaming smile. Her eyes immediately darted to where her mum, Angel Ntege, sat with her baby sister Debbie* in her arms. She jumped on Ntege’s lap and kissed Debbie hello. “Mummy, guess what I learned today?” she said with excitement.

Julie popped up and turned to them with the expression of a performer. “Mummy, can I teach you? Legs, hands, head, stomach,” she said, pointing to each part. She flew back over to the couch to show her mum her homework for the night.

Prioritising her children
A single mother, Ntege carries many burdens on her back, but her children come first in her life. Although Ntege is struggling to pay back some debts, she puts her daughter’s school fees at top priority.
Julie is in school and leaves for class every morning at around 6:30 am. But not before she physically sees her mother take her medicine.

“She keeps me going. [I] find myself forgetting I have HIV,” Ntege said.
Four years ago, Ntege was about to go to university when she found out, at 21 years old, that she was pregnant. Despite pleas from her boyfriend and her friends to abort the baby, she refused. She then went to a clinic thinking she would go through a simple antenatal visit and perhaps get some medicine. However, all women are required to test for HIV when they go in for antenatal care. “If someone is found positive, they can make sure they can protect the child you’re carrying,” the doctors told the group of mothers-to-be.

HIV never crossed Ntege’s mind. 30 minutes later, the doctors called her into a separate room. She was the youngest in the group that had been tested. “Why are they taking me in here?” she wondered. “Maybe they’ll tell me about giving birth. Maybe everyone else has already gone through this process,” she thought to herself.

The doctors began telling her about HIV, what would happen if the results were positive. They encouraged her. Ntege nodded along. “We have your results, but they’re not good,” they said. The bad news was delivered. It was too much for her. Ntege fainted.

The doctors then called the first name on her phone. When she regained consciousness, her cousin, also named Angel, was there to take her home. “Take heart. Be strong,” Angel told her. But a million thoughts flooded her mind.

“I’m pregnant, there is no support, the money’s not there, now I’m positive. What will I do with this child? Is my child going to be positive? Why should I give birth anyway? I’m going to die. Why would I leave my baby suffering?” All these and many other thoughts flooded her mind.

Ntege grew up knowing loss. Her father passed on when she was three years old, followed by her mother when she was seven. Years later, the label of HIV brought another kind of betrayal into her life.
Ntege’s ex-boyfriend and Julie’s father knew his status, but Ntege had no idea. When she refused to abort the baby, he fled to Boston and was out of contact for three years. It was the test results that made Ntege discover why he left – and wonder whether the transmission was intentional.

“I was very young, no relatives, no nothing,” Ntege said. “Julie’s dad had sponsored me, he took me to school for high school, but whether he had the intention to infect me, I don’t know.”
Although her cousins, Maureen and Bridget were a major source of comfort and support, much of Ntege’s family left her to fend for herself.

Amidst the turmoil of thoughts and emotions flooding her head after she received the news of her status, one question racked Ntege’s brain. “Is my child going to be positive?” “No, she can’t,” the doctor responded. “That baby will be free.”

Ntege didn’t know anything about HIV – she thought she was going to die the next day. She didn’t know about the ARV treatment that could save her baby. She didn’t know that she could live with HIV.
She started going for counselling at the Infectious Diseases Institute (IDI). “How do you feel about the baby?” a counsellor asked her the first time. “It’s okay,” Ntege responded, “I’m leaving everything to God.”

The counsellors became her friends. She also watched other women overcome the stigma and realised that having HIV didn’t define her life or the life of her baby. She heard the stories of HIV-positive mothers and drew strength from their mentorship. The feeling that she wasn’t alone motivated Ntege to be bold about her status and to take positive mothers under her wing.

“I have to show them the picture that living with HIV does not mean the end of your life,” she said.
Julie was born on July 7, 2009. When she was tested and Ntege found out she was negative, she cried tears of joy. “God saved my baby,” she said. Sometime later, Ntege wrote an article about her story. Having considered her long gone by then, Julie’s father found the article on the Internet and got in touch with her from Boston, asking about the baby and its status. But Ntege doesn’t carry a grudge towards him for infecting her.

A few years later, she met another man and conceived. She gave birth to her second daughter, Debbie, who is HIV negative too. But stigma caused the end of Ntege’s relationship with Debbie’s father. She was so bold about her status from the first time she met him at the IDI. But he never believed her. “Up to now, he doesn’t believe I am positive,” Ntege said. The two are no longer together. But throughout the stigma, the hardships of being a single mother, and the added stress of treatment and financial issues, Ntege has found women who understand her and finds encouragement in the women that she mentors. “I find a lot of challenges in life and sometimes if you don’t have someone to talk to, it becomes so hard,” she said. “I make myself very open so that they can approach me.”

Helping others out
Ntege has a heart for young people and the support she has received from the Kibo Foundation and ICW gave her the strength to not only believe in herself, but also, to protect the lives of other women in her position. “One of the biggest fears [I’ve seen] is becoming single mothers,” she said. “I tell them my story, yes I am a single mother but I’ve made it. I keep on telling them there is life.”

Preventing the spread of HIV from mother-to-child

The connection a mother has to her baby spreads across so many levels, but when HIV is involved, a mother has two lives in her hands. This is the situation Angel Ntege found herself in six years ago. Twenty one years old and pregnant, Ntege went for an antenatal visit after discovering she was pregnant. It was there that she found out that she had HIV.

Nine months later, she was able to give birth to a HIV negative baby girl because she had been put on medication under the programme, Elimination of Mother-to-Child Transmission (EMTCT). Ntege is lucky to be one of the women to access proper information and medication. The current goal, of EMTCT is to reduce the transmission rate of new child infections to less than five per cent by 2015.

Mother-to-child transmission (MCT) is the second most common transmission method. According to the World Health Organisation, HIV can be transmitted from mother-to-child through pregnancy, labour, delivery or breast-feeding. Therefore, it is vital for women to get tested as soon as possible when they become pregnant, because by taking treatment early, the risk of transmission is reduced.

Dr Daniel Okello, the acting director of public health and environment at Kampala Capital City Authority, explained that Parliament considers the MCT rate of less than five per cent to be somewhat eliminated. “Only through EMTCT can you ‘cure’ HIV. If a mother is positive and you come out with a negative baby, you’re more or less ‘cured,’” he says.

According to UNAIDS, MCT accounts for 18 per cent of new HIV infections every year. Ntege was on medication, Option A, an antiretroviral prophylaxis that she took only for the pregnancy, when she had her first child. The treatment only lasted a short time after delivery, and required a CD4 count of less than 350 in order to receive the medication. In 2013, Uganda adopted a lifelong treatment, Option B+, whose only requirement is to be HIV positive and pregnant. Ntege started Option B+ when she got pregnant with her second child Debbie, and takes the pill at 10am daily.

Getting women to take medication
Currently, there is a push to stop children who were born with HIV, about 20 years ago, from spreading it to their own children. And the number of babies born with HIV is dwindling as women are educated and empowered to get tested and receive treatment.

That is the major reason why Ntege has started mentoring young women at the Infectious Diseases Institute at Mulago hospital. She wanted to give them the support that she had been given. Ntege saw her own past and wanted a different life for these young women. “I knew if someone had talked to me, maybe I wouldn’t have fallen into this problem,” Ntege says.

Because of EMTCT and other examples of positive mothers around her, Ntege was able to fulfill her dream of having a second baby. She knew she could have another HIV-free child. “I wanted to have another child. I didn’t want my child to be alone,” she said.

Dr Okello says that even though these women may have HIV, they still have the right to have a baby. “No way are you going to remove that right from them,” he said. “To me the beauty is that they can now live a fulfilling life with a negative child.”

Looking at EMTCT as a whole, it can seem like a national goal. But additionally, the programme changes the lives of women like Ntege, allowing them to have a future and the family that they dreamed of.

Protecting babies from getting hiv

On March 22, 2013, the First Lady, Janet Museveni, launched a campaign for an HIV-free generation through the Elimination of Mother-to-Child Transmission (EMTCT).
EMTCT, formerly known as Prevention of Mother to Child Transmission, aims to reduce the transmission rate of HIV from mother to child to less than five per cent by 2015 through prevention, care and treatment methods.

HIV can be spread from mother to child through pregnancy, labour, delivery or breastfeeding. According to AidStar, EMTCT consists of four prongs:
1. Prevention of HIV infection among women of reproductive age
2. Prevention of unintended pregnancies among women living with HIV
3. Prevention of HIV transmission from women living with HIV to their children
4. Provision of care, treatment, and support to mothers living with HIV, their children and their families.

As a new approach to treatment, Option B+ was introduced to Uganda in 2013. Option B+ is a lifelong antiretroviral treatment, given to all pregnant women who are HIV positive. It is a combination of three drugs in one pill, and taken once daily. Option B+ also allows the mother to breastfeed, increasing the health of the child and reducing stigma for the patient.

In order for this goal to be achieved, women must be aware of the virus that they are dealing with and how it is transmitted. If women are encouraged to have planned pregnancies, educated on how to prevent transmission to their children, and adhere to treatment, another generation of HIV can be prevented.

Stigma and discrimination
Although Angel Ntege experienced more personal stigma with her peers, mothers living positively can even be stigmatised when they go to clinics that are supposed to be a safe place. The International Community of Women Living with HIV/Aids in East Africa is an organisation run for and by HIV positive women.

Regional Coordinator Lillian Mworeko said that some healthcare providers will look at women and judge them for getting pregnant when they know their status. “They will tell them what they should and should not do in terms of their sexual reproductive rights.”

Those living with HIV are in a vulnerable position because of the stigma that is rampant around them. But, as with any type of vulnerability, if there is someone there to have their back, to support them and show them that they’re not alone, HIV positive mothers can look past the stigma to find life.

*Names have been concealed to protect their identity

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