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Siyayinqoba Beat It! 2004 Episode 13 – PMTCT

The Siyayinqoba Beat It! team followed Busisiwe’s story about the death of her daughter Nomazizi; how her loss changed her perception of HIV and how she rose from that challenge. Dr Nombulelo Madala was in the studio again to answer questions about the prevention-of-mother-to-child-transmission programme.

Jason Wessenaar: Welcome. Jason is my name and I welcome you to Siyayinqoba Beat It! Support Group. Siyayinqoba means we can beat it. Each week I get together with other people living with HIV to discuss issues that affect our lives with HIV. Uma uphila negciwane le-HIV {IsiZulu} [If you are living with HIV], or have a partner, a friend or a family member who is HIV positive, this programme is for you. Today, we are talking about the prevention of mother-to-child-transmission of HIV, that is, the PMTCT programme. First losing her baby to AIDS then having a new baby, Busisiwe shares her experience with us.

Beating mother-to-child-transmission of HIV

Mfuleni, Cape Town

Busisiwe Maqungo: We didn’t decide to have this baby, it was an accident. Um, he was conceived because of condom failure. My other baby was killed by HIV or AIDS. So I would never decide to have another baby, I would never take that chance again and especially after looking after that very sick girl. I immediately went to see the nursing sister at work and told her, this is what happened. She gave me the morning after pill, but seemingly, it was already too late to take the morning after pill. Then there were other options like taking up pregnancy termination. That was something I couldn’t live with, I mean, to me, pregnancy termination was like killing, so I couldn’t do it. He was born on the 14th of December 2002. I took the Nevirapine, and the baby was given the Nevirapine syrup. Then after the baby was born I just fell in love with him. His name is Luthando. I never opted to breastfeed the baby, I’m bottle-feeding and I got the formula milk from the clinic up until six months. I don’t want to take a chance of baby getting infected through the breast milk. He is going to test when he’s nine months, he’s still six months now. I’m hoping that my baby is going to be negative.

Sister Elizabeth Smith (Campus Health, University of the Western Cape): Normally when a baby is nine months old and the baby is in the prevention-of-mother-to-child-transmission programme, we do what’s known as HIV anti-body rapid test. But in Busi’s case, because she’s already lost a baby to HIV and AIDS, she felt that she wanted to have the PCR done now, because there is a slim chance, even though a baby is negative, that the baby may still carry the mother’s HIV antibodies in his or her blood by nine months, and she felt that she didn’t want to take that risk and hear that her baby is still HIV-antibody positive, even though the baby may be negative, so she felt that she wanted to do the PCR at this stage.

Woman in the consultancy room: Obviously your baby is being tested today, how do you feel?

Busisiwe Maqungo: I’m scared. I’m scared but at the same time I’m happy because I’ve been waiting for this day to come. It’s been a very long nine months waiting.

Sister Elizabeth Smith: I’ve just phoned the lab Busi, and your baby’s PCR result is negative.

Busisiwe Maqungo: Oh my God. Liz, thank you so much.

Sister Elizabeth Smith: We’ve got very good news for you, baby. You’re a very, very healthy baby.

Busisiwe Maqungo: I’m so happy.

Sister Elizabeth Smith: I knew you would be. I said I had a good feel about this all along, Busi. You’ve been through the programme, you took the medication, so we now know that this programme works.

Support group

Jason Wessenaar: Congratulations Busi. So, PMTCT works, but many HIV positive mothers-to-be are not accessing the programme. What’s your advice to them?

Busisiwe Maqungo: Do it for the sake of the baby, because I also tell them about my situation with my first child, that I was never tested. Not that I didn’t want to be tested, but there was no MTCT. For them, it’s like they are privileged that this MTCT thing around. They are given a chance to know their HIV status so that they don’t give the virus to their babies. Ukhulelwa kwakho, yazi into yoba une-responsibilities ezi-more, kukho lomntu ongenguwe ngoku ofuneka umcingele. Onothi kanti xa une-HIV uyisulele kuye because ukungazazi kwakho ayithethi lonto into yoba izawumnka. Uba ikhona, ikhona egazini ayiyindawo. Awuzuthi hayi andifuni uzazi, ivele ihambe nje automatically. Iyaw’hlala ihleli. {IsiXhosa} [After learning that you’re pregnant, you must know that you will have more responsibilities. There’s a life inside you that you must think of so that you don’t transmit your HIV to them. Not knowing your status does not mean that it will go away. Telling yourself that you don’t want to know won’t make it disappear.]

John Vollenhoven: What do you think went wrong with your firstborn baby?

Busisiwe Maqungo: I wanted to know about my HIV status, but there was no programme in the clinic where I went, that the pregnant mothers are being tested, and they know about their status. After that they’re given something to prevent passing virus to their unborn babies. It wasn’t my fault. But, if there was an MTCT I can assure you I would have taken the blood test, I would have given Nevirapine or AZT to prevent the baby.

Prudence Mabele: Ma sesikhuluma nabanye oomama abanje ngam, abengekabi nomntwana aba-HIV positive. Yini into esingabatshela yona ukuthi ukuplena kubaluleke kangakanani phambi koba ubenomntwana ngoba kune-responsibilities ezininzi. {IsiZulu} [When we talk about women like myself, who don’t have children, who are HIV positive: what can we tell them about the importance of planning before having a baby, because there are lots of responsibilities.]

Busisiwe Maqungo: … lomntwana angabikho-positive… ayonto i-100% leyo. Awunoba-100% into yoba lomntwana wakho akazuba-positive. Lento ndiyitshoyo uba umntu makaqale athethe nogqirha wakhe, azilungiselele. {IsiXhosa} [You should ensure that your baby is HIV negative. Which is not 100% guaranteed that your child will be negative. That’s why I saw people should talk to their doctors and prepare themselves]

Jason Wessenaar: Tell us more about the test, what type of test is that, the PCR test.

Busisiwe Maqungo: PCR yona ayitesti anti-bodies, itesta exactly ingculaza. Uba unengculaza unengculaza ke. Iqalisa uba-accurate and especially ebantwaneni after three months. {IsiXhosa} [Okay, the PCR test does not test for antibodies it tests exactly for HIV. If you have the HIV you have it. It starts being accurate especially in children after three months.]

Prudence Mabele: i-Test le ye-PCR ibifanele ukuthi ngempela ibhekwe ngurhulumeni. Especially nalabantu bayenzayo. Baqalelele manje bayi-donate khona la emzantsi kwi-Africa yonke, ngoba yona le-PCR njengabe nitsho ukuthi i-accurate. Into engiyibonayo ukuthi yhiyo ezobayi-answer ukuthi abantu bangahlali is’khathi eside kakhulu belindane nama-result. {IsiZulu} [The PCR test should be looked at by the government, especially the people who produce it. They must start donating it here in the South, in the whole of Africa because, as you say, PCR is an accurate test. I think it will be the answer and people will not have to wait long for their results.]

John Vollenhoven: Dink jy dat die triple terapie beter werk as die een pil? Sal jy n goeie, ’n beter kans staan asof net hierdie een Nevirapine pil te gebruik. {Afrikaans} [Do you think that triple therapy works better than one pill? Do you have a better chance than with just Nevirapine?]

Busisiwe Maqungo: If the mother for instance gets AZT and Nevirapine while pregnant, to prevent MTCT, then the chances of the baby of catching HIV will be one percent. That is very low chances.

Prudence Mabele: Kupruviwe kakhulu phesheya kwelwandle ukuthi abantu uba bedla i-treatment ye-ARVs ukuthi kuyakhoneka ukuthi ba-decrease i-chances yoba umntwana abe-infected nge-one percent. And kakhulu ke uma ngaba ukwi-combination. Usho ukuthi sowuzitshele ukuthi uyamfuna lomntwana. Ungakwazi ukuthi umenze and umntwana aphume e-right and nawe futhi ubekhona ube-strong. {IsiZulu} [It has been proven in overseas countries that when people are on full ARV treatment that they lower the chances of the child getting infected to one percent, especially when you are on the combination therapy. That means, if you have decided to have this child, you can have that child and they will be healthy and you will also be healthy and strong.]

Jason Wessenaar: Women need to also speak to their physicians and their doctors, because there are drugs which would not be safe on a woman whose pregnant.

Prudence Mabele: Kubalulekile vele ukuthi ma uthatha lezinqumo ukukhuluma no-doctor no-sister na wonke umntu even i-family ekhaya. {IsiZulu} [It’s important that when you take these decisions, to talk to your doctor, your nurse, people and your family at home.]

Lihle Dlamini: That is very true, we must tell our families, like if you give birth to a child and find out you are HIV positive. Just because, especially if you are breastfeeding, you only have to breastfeed exclusively, you don’t have to give formula. And it’s very important. Ja lento oyitshoyo Prudence… ungathi ngelinye ilanga umshiyile umntwana, Mhlawumbi uye es’bhedlele… uthole ukuthi umntwana sebemnikezile i-formula bangakutsheli wena. Umntwana angalithola igciwane le-HIV through i-breast milk. {IsiZulu} [On days when you’ve left your child at home, maybe you’ve gone to the hospital and you’re only breastfeeding you find that they’ve given the child formula without telling you. Because a child can get the HIV virus through breast milk.]

Anthony Fernandes: Being pregnant is not only stress, it’s a huge commitment, not only for you but for the newborn child. And I think it lowers down your immune system, and it brings everything down, and it’s such a health risk if you’re HIV positive in the first place that you have to think it really, really, really through before you make that decision, that you can’t really make room for mistakes or taking a chance. You have to be absolutely one hundred percent sure before you’re gonna do this.

Jason Wessenaar: Then there’s all the more reasons that you need to plan, and think it through. Say: “I’m gonna be around for such a number of years, what will I leave my child with if I do leave?” But then thinking about your own health situation, the immune system dropping, the chances of losing the baby and the chances of the baby actually bein g infected. So there’s a whole lot of issues, I agree with you on that.

Busi and son Busisiwe Maqungo: I wouldn’t just encourage women to fall pregnant. For instance, look at me in the video that we watched. When I found out that I was pregnant, I wanted to terminate the baby. And my reasons was that, what if this baby is born HIV positive? I know that there is Nevirapine, but still, there’s this other fifty percent chance. I was not ready to go through what I went with with Nomazizi.

Jason Wessenaar: We’ll talk more about this issue after the break.

Jason Wessenaar: Mmuhi reya le amohela mona ho Siyayinqoba Support group {Sesotho} [Welcome back to the Siyayinqoba Support Group,] the programme for everyone infected and affected by HIV. The Siyayinqoba Team went to Rietvlei in the Eastern Cape to talk to mothers about the prevention-of-mother-to-child-transmission of HIV, and the difference it has made in breaking down HIV related stigma.

Beating the stigma of MTCT

Rietvlei, Eastern Cape

Zamsile Wagner: Igama lam nguZamsile, ndingowakwa Wagner is’bongo. Ndingowase Luthi. Ndiye ndakhulelwa, bengihamba ikliniki, kuye kwafumaniseka uba manditshekhe igazi. Bendisoyika ukulitshekha igazi but ndiye ndacingela umntwana wam ukuba ndinalo igciwane naye angaze atheleleke. Ii-result zabuya zathi ndi-HIV positive. {IsiXhosa} [My name is Zamsile Wagner. I’m from Luthi. When I fell pregnant I went to the clinic to have my blood test. I was scared to check my blood. But I thought of my baby. If I had the virus, he might be infected too. And the result came that I’m HIV positive.]

Sister Leah Siyotula (Rietvlei Hospital): When we started, some of the mothers refused to be tested. But now if you counsel them, they say: “Sister you can take blood.” They are no more scared because they have seen some of the babies that were given Nevirapine that are nice and plumpy, so they like their babies to be like that.

Nurse Ntombosindiso Nompila: I’m Ntombosindiso Nompila, I’m a sister working her in the maternity ward. I’m involved in the prevention-of-mother-to-child-transmission. When the client has been counselled and found to be positive, we give Nevirapine when the woman is in labour. The baby is given Nevirapine syrup, which is given according to the birth weight of the baby.

Zamsile Wagner: Xa sendilunywa ndayiginya lepilisi, ndabe sendiphuthuma es’bhedlele. {IsiXhosa} [When I felt the labour pains, I took the pill and rushed to Hospital.]

Sister Leah Siyotula: On discharge, we give them the option there of feeding the baby; breastfeeding or formula feeding exclusively.

Zamsile Wagner: Ndakwazi uba cacisela uba kutheni umntwana ndingamncancisi. Ndabaxelela uba ndifuna umntwana wam atye iithina khona kuba ndi-positive khona angatheleleki kalula. {IsiXhosa} [I explained to my family why I don’t breastfeed the baby. I told them I want my baby to use formula food because I’m HIV positive, so my baby can’t get infected.]

Nurse Ntombosindiso Nompila: Mostly they are scared to disclose, because of the stigma, especially when this is not accepted by the mere family she’s staying with, so it’s not easy for them to disclose.

Zamsile Wagner: Bandixelela ukuthi ndingothuki futhi ndingazibulali, ndingacingi kakhulu kuba nam ndifana nabanye abantu. {IsiXhosa} [They just told me I shouldn’t be afraid. I shouldn’t kill myself. I shouldn’t think too much, because I’m just like everyone else.]

Support group member: Masazise uba sine-support group eloluhlobo eyenzelwe umntu xa efika pha akhululeke ayazi uba uzawufika kukho abantu abazi-PWAs kuphela. {IsiXhosa} [We inform people that there’s a support group where they can talk freely and we are only PWAs here.] I had my blood tested in November and that’s when I learned that I have HIV. When I found out, I had some problems. That’s when I joined the support group.

Older support group member: Nam ndifumaniseke ngoya kutesta ngo-November, ndathola ukuthi ndinalo eligciwane. Kodwa kuthe ndizifumane ndatholakala, ndiye ndathanda ukuphatheka kabi. Kuthe ekuphathekeni kwam kabi, ndaya kwi-support group. {IsiXhosa} [I had my blood tested in November and that’s when I learned that I have HIV. When I found out, I had some problems. That’s when I joined the support group.]

Another younger woman: Ndafike ke ndatsho ekhaya. Ndathi kuba ndibatshele ekhaya ndahlukumezeka. Kwathiwa kufuneka ndibeneskotila sam. Ndibene cephe lam. Bathi umntwana abazumphatha ngoba naye unayo. {IsiXhosa} [I disclosed at home and then I got discriminated against at home. They said I must have my own dish, my own spoon. And they said they can’t carry my baby, my baby has it too.]

Jason Wessenaar: I would not advise other women, because of other issues that are involved in having a child. And also you mentioned that it might happen that Nevirapine won’t work. And I don’t think that I’d want to put my child through that, if I were to decide to be a parent.

John Vollenhoven: If you want to have a child you’re going to re-infect me, or I’m going to re-infect you. My CD4 count may be high. When I’m re-infected, what will my CD4 count be? That’s also a risk.

Jason Wessenaar: But Uncle John that’s also why I would not, as a man who is positive, I would not go taking the risk of having a child. Because if my partner is positive, they’ll be re-infected, I’ll be re-infected.

Vuyani Jacobs: I used to actually be very sad when people talk about children. Because when I decided to have a child I was already having HIV, because I never wanted a child when I was growing up. My mother used to tell me: “Vuyani, you’ll have a child, you’ll get out of school; you’ll care for the child.” And I never wanted to get out of school. I wish I was using condoms because I wouldn’t have been infected by now, but anyway, that’s dealt with. Now I have HIV, it’s fine. Now I’ve decided I’m going to have a child because I have a stable job, and I have a stable relationship, and I have a stable environment.

Jason Wessenaar: For me, what you’re saying brings out the issues of values and culture, that a lot of African men…

Vuyani Jacobs: No, this has nothing to do with culture.

Jason Wessenaar: It brings up that.

Vuyani Jacobs: No, no, no, just listen.

Jason Wessenaar: It may not be that for you, but I’m saying it opens doors for that.

Vuyani Jacobs: I never put it as any cultural pressure I have, or social pressure that I have, because I do believe, I’m already ten years with HIV, I’m going to live another 20 years with HIV, why not have a normal family?

Anthony Fernandes: Our future is thousands of orphans at the moment. That is our future, that is our children who is gonna ask very big questions when they sit around these couches one day and say: “Right, who’s responsible for us being here? What was the decisions made?”

Lihle Dlamini: I think guys you are depriving other people of having their reproductive rights. We are all human. I am HIV positive and would like to have a baby one day. And I think it’s unfair of you to judge other people if they want to have their babies.

Jason Wessenaar: We talk to Dr Nombulelo Madala, our resident doctor after the break. Stay with us.

Jason Wessenaar: Welcome back to Siyayinqoba Support Group. We also welcome Dr Nombulelo, our resident doctor who is here to answer some of our questions about the PMTCT programme.

Dr Nombulelo Madala: If the woman who is HIV positive can be on highly active antiretroviral therapy, during the time of pregnancy or maybe even before, specifically if they were to start during pregnancy they would have to start in the second trimester because in the first trimester there is a risk to the baby of getting toxicity from the drugs. On highly affective antiretroviral therapy, the woman’s viral load is suppressed in a long-term way, compared to the PMTCT programme, it’s long-term suppression of viral load. Then there’s no need for giving ARVs as part of a PMTCT programme, so the PMTCT programme is useful for situations where there is no highly active antiretroviral therapy available. We could compliment that with having a caesarean section for delivery, and then we could not breastfeed after the baby is born. And that would be low risk.

Lihle Dlamini: When is Nevirapine given to an HIV positive mother and for how long is it given to a baby after birth?

Dr Nombulelo Madala: Women ought to know their status during pregnancy. And sometimes during the antenatal visits they get given the Nevirapine to keep, and then they are informed that at the beginning of labour they must take that one dose of Nevirapine and then they come in, and we deliver, either using a C-section if it’s possible, or using careful normal vaginal delivery. And then after the delivery, the baby is given also one dose of Nevirapine, the syrup, soon after delivery within 72 hours.

Busisiwe Maqungo: Masithi umama ke ukhethe u-breastfeed exclusively {IsiXhosa} [Let’s say a mother who chooses to breastfeed exclusively], is it one hundred percent safe?

Dr Nombulelo Madala: Olubisi lomama o-HIV alukho-one {IsiXhosa} [The milk of an HIV positive mother is not one] hundred percent safe, even if there’s exclusive breastfeeding, but the risk is less than mixed feeding. In most PMTCT programmes, the formula milk is available free of charge, until the nine month first rapid test of the baby.

Vuyani Jacobs: Couples or any person whose actually wanting to have a child, especially the women, at what time in terms of the CD4, in terms of the health person, what would you look into?

Dr Nombulelo Madala: We would look at the issue of the viral load and the CD4 count and the mother’s health. So I wouldn’t recommend for someone to be pregnant when they have a very high viral load and a very low CD4 count, and when they are having an opportunistic infection.

Nontsikilelo Zwedala: I’ve heard that there’s also the transmission when the mom being in labour for more than four hours. Is it true?

Dr Nombulelo Madala: If it has to be a normal, vaginal delivery it has to be careful. What we need to avoid prolonged rupture of membranes. When a mother is in labour for long and the membranes have ruptured.

Anthoney Fernandes Anthony Fernandes: Is HIV positive, does it play a role in planning to become a mother or not?

Dr Nombulelo Madala: We talk about how she is, how far she is with the disease, will she be able to cope with the pregnancy, that’s a physical and a social answer that I need from them. I can tell them what I think from the medical side. She could tell me what homework she has done on the social and emotional and financial side.

Jason Wessenaar: Siyabulela Dr Nombulelo ne-Siyayinqoba Support Group nani babukeli ekhaya. {IsiZulu} [Thank you Dr Nombulelo and the Siyayinqoba Support Group and the viewers at home]

PMTCT UPDATE

Jason Wessenaar: During the 15^th International AIDS Conference in Bangkok in 2004, questions were raised about the use of Nevirapine as a single dose for the prevention of MTCT of HIV. Dr Trevor, what’s the latest on Nevirapine used as a single dose to prevent the child from getting infected?

Dr Trevor Majoro: The recent developments and discussions at Bangkok, especially raised from different quarters, suggested that the single dose of Nevirapine to prevent mother-to-child-transmission was actually effective. The truth of the matter is it still is effective, because it is able to prevent at least fifty percent of transmission. Although we know now that combinations are better, for example if you take a combination of AZT and 3TC, you get around ninety percent prevention of transmission. So combination is better. But people should keep on taking those single doses of Nevirapine until such time as there’s a different directive otherwise in the local clinics and hospitals. People mustn’t stop because of what they’ve heard, they must continue.

Jason Wessenaar: Things to remember are:

30 out of 100 pregnant women with HIV will pass HIV to their babies at birth.
The single dose of Nevirapine reduces the MTCT of HIV by half.
A woman on full ART has only one percent chance of passing HIV to her child.
Taking AZT and Nevirapine together reduces MTCT to under ten in hundred cases.

We hope that you have enjoyed the show and are feeling the Siyayinqoba Spirit, that together we can Beat It! If you have any questions for us or for Dr Nombulelo, please contact us on the numbers below. Join us again next week in the Siyayinqoba Support Group. Until then, stay healthy, stay positive.