HIV-Positive Moms and Breast-feeding, Motherhood

Two HIV-positive women discuss how people with the disease can protect the health of their children.

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MICHEL MARTIN, host:

We wanted to talk more about the dilemma of women with HIV/AIDS and babies. As anyone who has ever wanted a baby knows, the desire to have a child can be overwhelming. On the other hand, the need to protect that child is also overwhelming.

Here to talk to us about their struggles to reconcile the desire for motherhood with the realities of being HIV positive are Rolake Odetoyinbo. She's the director for project Action for Treatment access in Lagos and a fellow at the African-American HIV University. She's been HIV positive for nine years, and she has a six-month-old son. We're also joined by Violeta Ross, an anthropologist and national chair of the Bolivian Network of People Living with HIV/AIDS. She was diagnosed as HIV positive seven years ago and currently has no children. Ladies, thank you both for being here.

Ms. VIOLETA ROSS (National Chair, Bolivian Network of People Living with HIV/AIDS): Thank you.

Ms. ROLAKE ODETOYINBO (Director, Positive Action For Treatment Access): Thank you very much.

MARTIN: And Rolake, will you start? You tested HIV positive in 1998, and as I understand it, at that time, you were already trying to get pregnant. How did the news about HIV affect your thoughts?

Ms. ODETOYINBO: When I tested positive, the thoughts of having a baby really goes down and recedes to the back of your mind. And you're thinking, how do I deal with this issue? So at that point, what your dealing with is you being told you are living with HIV. You're testing positive, you want to address - at that time, your husband testing positive, and how do you reconcile this before you go back to the baby making? All your agenda just takes back place, and it's about what do I do right now with this.

MARTIN: How did you get back to the idea that you might still consider having a child?

Ms. ODETOYINBO: I was told I had between eight and 12 years to live. I was 28 years old, so I'm thinking, okay, if I've got eight to 12 years - 12 years, age 40, by 40 I'm out of here. So the question is what do I do between now and age 40? But being a counselor, you understand HIV infection, and the issue is, do I have access for treatment?

Knowing that there is something called HIV treatment and I can access treatment now give me time to go back and say, okay. What would I like to do with my life? And that's when the baby making issue came back again as in, okay, what do I want? I want to be a mother. I want to have a child. What are my chances? Are there women who are living with HIV, who've had healthy HIV-negative babies?

MARTIN: Well, I wanted to ask you about that. You had to consider the possibility that you'd be passing HIV on to your child.

Ms. ODETOYINBO: Yeah.

MARTIN: How did factor into your decision…

Ms. ODETOYINBO: Four months ago, I had a baby. And even though I'd had HIV for eight years, I knew all the statistics. I realized that even with access to treatment, you still have a two percent window, because nobody's going to guarantee you 100 percent. You have the margin of error. You have all of that. So I knew that two percent chance was there. But just like everything in life, you do take risks, and it's will I do this and know that I've tried, or am I just going to roll over and die and say, okay. If that two percent chance is there, I do not want to have a baby. And so that's - I knew that and I chose to take that risk like you choose to take risks every day, but then it was a responsible and informed decision I made. So I really worked with my doctors, and, I mean, I had access to all that information.

MARTIN: What about your partner? Did he have any say in this decision?

Ms. ODETOYINBO: Well, in this case, I chose to get a donor. So it's not like a paternal professional partner.

MARTIN: Because your marriage broke up.

Ms. ODETOYINBO: So it's a donor. My donor is not HIV-negative. And since - I mean, he's really a donor, not the father of my child. So really, this was a decision I took by myself, knowing my culture and then living at home in Lagos, Nigeria and understanding of dynamics, yet I chose it. I mean, it was my choice to make, and I chose that.

MARTIN: And Rolake, I must ask you. There are those who would say that this was a very selfish decision for two reasons: one is, whatever the risk factor, you do confront the possibility of passing on HIV to your child. And secondly, the possibility that you may face a foreshortened lifespan - and particularly as a single parent - that you might not be able to see your child to adulthood. And I know that you have confronted these questions, so I'd like to ask you what is your answer to them?

Ms. ODETOYINBO: These are valid questions. Every time a woman gets pregnant -HIV-positive or negative - there is a this chance that this child might have a birth defect, that this child might have a deformity that - nobody can guarantee you a perfect baby. It doesn't matter what your health status is. But do we, for that reason, say then I'm never going to have a child? No. So we all know that with every pregnancy, you have the risk factors. And then you make an informed choice, which is (unintelligible). It's not an irresponsible decision. It's an informed choice.

MARTIN: What about breastfeeding?

Ms. ODETOYINBO: I did not, I will not and I cannot breastfeed. People say, oh, but you can do exclusive breastfeeding. Even though I've done all I know to do, if I breastfeed this child, there are 16 percent chance that I can pass the virus onto him. For that reason, I chose not to breastfeed.

MARTIN: Was that hard?

Ms. ODETOYINBO: Because I'm openly positive. Because my HIV status is not an -has stopped being an issue, I can walk in to a clinic with a feeding bottle, mix the milk and feed that child. And if you ask me, I'll tell you upfront, I'm not breastfeeding. Why? Because I'm HIV-positive.

MARTIN: But is it the kind of thing what people would actually confront you about? I mean, is there, for example, a…

Ms. ODETOYINBO: Yes. I mean, don't forget (unintelligible) country, you have baby-friendly sessions. I mean, you have some clinics where if you go in with a feeding bottle, they'll practically throw it out of the window. That's because there's this whole thing about baby-friendly. You know, you need to breastfeed exclusively for the first six months and all of that. And which is why right now we're saying what is the best thing for your child? Breast milk. Yes, we know that. No contest. However, for a woman living with HIV, breastfeeding might not be the best for that child.

MARTIN: But, you know, that recent research suggests that a child is more likely to die from gastrointestinal problems in some African countries than they are likely to contract HIV/AIDS from their mother's breast milk.

Ms. ODETOYINBO: What we're saying is, where you don't have a glass of clean water, teach simple hygiene. Can you teach this woman how to boil and clean that water so that her baby has access of safe drinking water? Don't go on with this excuse of, oh, the child would rather die of dysentery. How come the mother didn't die all the time she was pregnant? You know our needs. So we are saying it's about the health of the mother and the child. Teach the women simple hygiene. Teach them simple ways they can feed their babies and help them make empowering choices, not just force them down their throat and say it's must be x, y, z.

MARTIN: Violeta, what about you? You were diagnosed with HIV when, I think, you were what? Just 23.

Ms. ROSS: Twenty-three.

MARTIN: And you've known of your status for seven years now. What are your thoughts about whether you would like to have a child?

Ms. ROSS: Well, that has been a desire I had even before being HIV-positive. And I think I got infected just because I was looking somehow to get pregnant, but maybe with the wrong persons, right? And when I discover my status, I started to study precisely the issue of motherhood on women living with HIV. If you are alone, if you are a single parent and coming from my religious background, it's very difficult to do it in a context like Latin America. So I realize that maybe that was kind of a selfish desire. It was something I needed to complement myself.

What I saw in the stories of these other women living with HIV on my own is that maybe I could also be a mother and not necessarily be pregnant. My sister, she just had a baby. And, you know, I am the mother of this baby. Many people would say, oh, but you were not pregnant of her. But the care I provide for her, the love, the time I spend with my little niece, that is also motherhood.

MARTIN: Have you firmly decided that you will not try to get pregnant, to give birth to a child?

Ms. ROSS: I decided that I won't do this alone. I won't do this without a father.

MARTIN: So you're holding the door open. You're saying that if you find the right partner, you would reconsider.

Ms. ROSS: Yes, I will. That will be a little bit difficult, because I am a public speaker about being a rape survivor and an HIV-positive woman now. And that's not what men are looking for. I don't know. Maybe if I was living in another country with more numbers of people living with HIV, this was not going to be the case. I don't really know. But it's also because with my learnings on being HIV-positive, I became stronger, I became more independent, more responsible of my life. So I am a woman. It's hard for them. You know, I think that's bothering many of my potential partners.

MARTIN: So there's a lot going on there.

Ms. ROSS: Yeah.

MARTIN: I wanted to ask. Do you feel a need to defend your decisions, whatever the decision is? And Rolake, will you start?

Ms. ODETOYINBO: What I'll say is whatever the woman has chosen to do, I will support that decision. However, do I need to constantly defend that - my own decision? No. I think I've moved way past that.

MARTIN: And Violeta, what about you?

Ms. ROSS: I realize that many of us are so under pressure because our culture is saying, well, you have to have a baby. You have to become a woman in this sense. So we must expand the concept of motherhood, because I am being a mother already. I feel so happy for this. I didn't put myself at risk. I didn't put the baby at risk, whatever. But I also have to say that if I can do it, I will do it. I think the outcomes of being pregnant for me someday would be much more than the risks that I could face for sure.

MARTIN: Violeta Ross, thank you. Violeta Ross is the national chair of The Bolivian Network of People Living with HIV/AIDS. And Rolake, thank you. And Rolake Odetoyinbo is the project director for Positive Action for Treatment Access in Lagos. And she's a fellow at the African-American HIV University, part of the Black AIDS Institute. And they both joined me here in the studio in Washington. Thank you both so much.

Ms. ODETOYINBO: Thank you very much.

Ms. ROSS: Thank you very much, Michel.

(Soundbite of music)

MARTIN: Coming up, a black baseball player complains that Latinos are taking over the league. Fair comment or foul ball?

Unidentified Man: Twenty years ago, white folks used to go around - and to some degree, they still do - go around every time they don't get a job promotion it's because they went to a black guy. You know, a black guy, through affirmative action, took my job. And now, 20 years later, you have African-Americans going around saying I lost my job to a Latino.

MARTIN: The men of the Barbershop talk baseball. That's coming up later on TELL ME MORE.

(Soundbite of music)

MARTIN: I'm Michel Martin. You're listening to TELL ME MORE from NPR News.

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