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First-hand: the mentor mother keeping babies HIV negative

Margaret Odera as told to Sarah Oughton

20 March 2024

Margaret Odera is a community health worker based in Nairobi, Kenya. Her greatest joy is seeing mothers with HIV deliver healthy babies and ensuring they stay HIV negative 

I tell them I have HIV but my husband doesn’t 

Often mothers only learn about their HIV status when they are pregnant and come to me for a check-up. As a mentor mother, I advise them that it will be possible to protect their baby from HIV, but it will be important to disclose their status to their spouse.   

There is still so much stigma around HIV and many women are very afraid to even discuss it with their spouse. So to get over this issue we encourage women to bring their spouse to the clinic for their next check-up and explain that we won’t reveal their status, but we will talk them through the plan to test them for HIV as a couple.  

If they both test positive, we just start from there and discuss with them how they can keep the baby safe and HIV free. 

If we find that they are discordant (meaning one person is HIV negative and the other positive) , we do not disclose that the wife had been tested previously. But now everyone will see their status and from there we start encouraging them. 

But because it is really difficult for a mother who tests positive when the husband has been found negative, I encourage them by telling them about myself. I tell them I have HIV but my husband doesn’t and that we have healthy children who are HIV negative.  

I explain about the treatment, and how by taking these as prescribed the baby will not be affected by HIV. This encourages the parents and I am really happy because right now in Kenya, the rate of HIV transmission from mother to child is below 2%.  

Not a blame game 

Let me tell you about a mother called Faith, who gave me permission to tell her story. She was 24 years old when she became pregnant and came to me for her check-up. When she tested HIV positive she really cried and said that it is impossible. So we had to do the test again. And again, the lines showed just the way it was. And she really cried. And she just told me she wants to die, she wants to commit suicide because she cannot believe that her husband has infected her with the virus, as she had never had sex with anyone else.   

So I took her to a private room where she really cried. I could easily put myself in her shoes because I also got HIV with my first sexual partner. I told her, you know, you're not alone. I am also a mother and I am HIV positive and I've lived for more than ten years with the virus. And she told me, ‘You are lying. You have been paid to tell us this’.  

So I tested myself so that she may see. When she saw it was true, she asked me, ‘How is this? You still look very healthy.’ I told her that all my children are healthy too.  

The next day she brought her husband to the clinic. She was still furious. And when I tested them, they were both HIV positive and I had to calm them down and tell her it is not a blame game. It will not change anything.  

The husband said he never knew that he had the virus, so we started from there. I said let it be bygones and let's support each other. When the baby was born, it was a baby girl.  

After six weeks, the baby tested negative. After six months, negative. After 18 months, negative. That was the most joyous experience for this mother. She was so happy and a few years later she got pregnant again. She gave birth to a baby boy. Now she has two bouncing babies. Right now they are both in school and they are doing very well. 

We want all our children to be free from HIV 

Since then, Faith became a mentor mother herself and because she is young, she can connect with other young mothers. She is now a very renowned mentor mother. She’s really proud to stand before people and tell her story. She was so suicidal when she first found out, and now I look at the way she springs up to talk. She's thriving as a community health worker who is really doing good. I feel so proud of her.  

As a mentor mother, we still have a lot of discrimination and stigma in Kenya, as in when somebody sees that I am disclosing my status, they might distance themself from me, even up to this moment. 

But the advice I give mothers is that at the end of the day we want all our children to be free from HIV, so I tell the mothers to disclose no matter what the circumstances.  

So in the process, as I support them, the mothers get encouraged, and that is really encouraging for me as a mother. I feel the same thing I felt when my babies were negative. Now when an exposed baby tests HIV negative it is really encouraging for me, and for that mother, there is really a celebration. Some of them even throw a party.  

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