Wednesday, November 9, 2011
She rests her hand on her protruding belly as she looks at the small, light blue building in front of her. She lifts her hand to knock on the door but hesitates. The memories from her last three labours come back to her in a mixture of bright lights, shouting strangers and pain. Most of all, she remembers not feeling safe. A stubborn determination enters her eyes as she knocks on the door: she does not want her fourth pregnancy to be the same. Zethu Mqopi* was one of the first rural women brave enough to enter Karen Clarke’s Busfare Babies Birth House in Hamburg. “At the birth house we are trying to comfort you so that you can forget about all the bad things that happened during the first baby,” Mqopi says. She now works with Clarke giving other women the option to enjoy giving birth. “Birth can be a beautiful thing,” explains Clarke, a qualified midwife, “not just something you have to get through to have a baby.” For just over a year the birth house has served rural women from Hamburg and the surrounding areas. Clarke provides a safe and supportive place for these women to have their babies free of charge. “Hospitals don’t realise that the environment they are creating is actually counterproductive for birth,” she says. Clarke believes it is better for both the mother and baby to have a natural and home birth provided there are no complications during the pregnancy. “We’ve neutralised the maternal instinct,” she explains. Clarke bases her methods on the natural way the body reacts during child birth. “There are two major hormones in birth- adrenaline and oxytocin,” she says. Adrenaline (which allows us to act in times of danger) stops the release of oxytocin. “Oxytocin is the hormone that makes many things happen,” she explains. “It’s the hormone that makes breast milk be produced; it’s the hormone that makes contractions happen for the baby to be born.” A mother needs to be able to relax and feel safe so that she produces less adrenaline. The two most important things to leave out during the birthing process are light and language. “Instead you have the opposite, you have bright light and someone shouting at you which means a woman can’t give birth,” says Clarke. In a hospital, the baby is generally taken away from the mother, cleaned and put in an incubator: all of which Clarke feels is unnatural and unnecessary. “Try to imagine a new born of a gorilla mother – and if you try take her baby away from her, what her reaction would be,” she says. “It’s not a natural thing to just let someone take your baby but if you go to most hospitals, most women don’t question it.” Clarke argues that even premature babies do not need an incubator. “You keep them on you like a kangaroo and they grow much quicker because they feed on their mother’s warmth,” she says. “It’s much more normal for a baby to be in that kind of environment than a heated box.” Eastern Cape hospitals, especially, are not an inviting environment for expectant mothers. A Human Rights Watch report released a few months ago alerted the public to the terrible treatment experienced by women in these facilities. Many women, like Mqopi, who come to Clarke are afraid to repeat the experiences they have had in these hospitals – experiences of pain and fear. Clarke maintains that a natural home birth need not be painful. It should be relaxed and as natural as possible. “Studies have been done that say the more civilised a country the more pain is experienced during child birth,” says Clarke. In our modern culture the idea of home births, and Clarke’s birth house, may sound backward. However, the birth house, and what it stands for, asks a telling question of the Eastern Cape’s health system: is it better to be human or humane? “I always joke that I can climb into bed with anyone,” Clarke smiles. “During labour I climb into bed with the women because that’s what the women want – someone to lie with them, not going anywhere, not fiddling about and when neither of us can sleep it’s time to have a baby.” For more information about the Busfare Babies Birth House please visit www.birthworks.co.za or contact Clarke on 0827763622. *Name has been changed
One bare foot slowly steps in front of the other. Her left hand presses against the wall for support, while her right holds her pregnant belly as she limps toward the nursing station. “It’s not about me anymore, it’s about my child,” she repeats to herself to get through the pain. Nthuthu Mxalisa, who has been living with HIV for 12 years, remembers how she stubbornly left her bed during labour to remind the nurses to administer her medication. She was told she needed to receive the antiretroviral (ARV) drug, AZT, every three hours during labour, and she was going to make sure she did. “The nurses told me I was a pain,” she says with a smile, “but I had to do everything I could to prevent my child from contracting the virus.” Nthuthu had always known that she wanted to have a child and, with the advances in treatment, HIV would not stop her. When she gave birth four years ago she received dual therapy treatment where she received AZT during labour and her daughter received another ARV, nevirapine, for the first six week of her life. This all paid off when Nthuthu received her daughter’s test results. She was negative. Since then there has been more advancements in this field. The roll out of prevention of mother to child transmission (PMTCT) treatment began a few years ago and has been a great success. A recent report, issued by Human Rights Watch, brought to light shocking information regarding maternal care in some Eastern Cape health facilities. Along with general negligence, patients have reported incidents of verbal and physical abuse. Some women have experienced nurses berating them for “getting pregnant knowing they were HIV positive”. Instead of condescending nurses, Nthuthu found a similar reaction from one of her co-workers. “One day when I broke the news she asked me, how can you do that? What kind of message are you sending?” Nthuthu had worked as an HIV counsellor for a number of years and knew better than anyone that, as a woman, she had the right to have a child. PMTCT has created a way for HIV infected women to empower themselves and stand up for their rights against the stigma of the disease. Professor Hoosen Coovadia, one of South Africa’s foremost PMTCT experts, says, “This virus has been the cause of a lot of gloom and doom in the country but it is time to focus on the success stories.” He believes that PMTCT is one of these stories and Nthuthu agrees, “HIV is no longer a death sentence.” When he worked in anti-natal clinics in the 90s he witnessed a different situation, “Out of every hundred mothers about 32 babies were positive but now it’s down to less than three.” He believes that it is simply the failure of our health system that is to blame for the remaining three percent. Our health system has numerous problems including a shortage of adequate care and resources. This has influenced the way PMTCT treatment has been implemented. Nthuthu realised this when seeking advice about her pregnancy. She had learned that a Caesarean section held less risk than natural birth in terms of transmission. When she asked whether this option was available to her, the nurse replied with a question, “What shoe size are you?” Puzzled, Nthuthu replied, “Six or Seven.” The nurse smiled, “Well then you will have no problem delivering your baby, you are going the natural way. We don’t have the resources.” Nthuthu need not have worried because with ARV treatment before, during and after birth, the risk of transmission is miniscule: even if you ‘go the natural way’. On the subject of ‘natural’, breast feeding has been a contentious issue regarding PMTCT. Four years ago, at the time of her pregnancy, Nthuthu was told to use formula as it was much safer than breast milk. In more recent years this view has largely been accepted as untrue. Through PMTCT the transmission rate through exclusive breast feeding (where the child is only fed breast milk) is around one percent. According to Coovadia the protective properties of breast milk are crucial in the third world context. “It has been observed that in the developing world as soon as you stop breast feeding three things happen: the child become malnourished, contracts infections and diarohea.” According to Coovadia, C-sections and formula feeding belong to developed countries as many people in South Africa simply do not have these options. “Now, through PMTCT, we can get the benefits of breast milk and minimise transmission.” This information was not available to Nthuthu when she was pregnant but, as an HIV and PMTCT counsellor (working at the Raphael Centre in Grahamstown) she helps to create awareness. Nthuthu only began taking ARVs for her own health at the beginning of this year. Now, instead of Nthuthu reminding the nurses to give her, her ARVs, her daughter reminds her every evening. “She is the best treatment supporter you could ever find.” Grey box How does PMTCT work? There are three possible points of transmission of HIV from a mother to her child. Accordingly, there are three interventions on the PMTCT programme. 1. Transmission in the womb: ARVs are administered to the mother during pregnancy if her CD4 count is below 350. The CD4 count is an indication of the strength of someone’s immune system. ARVs increase the CD4 count and reduce the chance of transmission. 2. Transmission during birth: ARVs are administered to the baby for first 6 weeks to reduce the chance of being infected during the birth process. 3. Transmission during breast feeding: ARVs are administered to the mother for the duration of breastfeeding (optimal time frame is 18 months) to reduce transmission through the breast milk.
Alone, Desmond Diko* sits at his kitchen table in Joza, shifting his anxious gaze from the glass of water in front of him, to the wall where the clock stubbornly hangs. Next to the water, he places a yellow and white capsule next to two white tablets to form a neat row. To pass the time, Desmond imagines his friends out celebrating the opening of the National Arts Festival. He feels a pang of jealousy as he glares at the pills. He blames them. He blames himself for them. The more he stares, the slower time seems to move. Finally, the alarm rings: it’s 8 o’ clock. Desmond has already gulped down his tablets and raced out the door. Desmond is living with HIV and these three tablets are what keeps him alive. These antiretrovirals (ARVs) fight the HIV virus in his body. They will never cure Desmond but they have offered him the chance to live a long and healthy life. “In 2011 nobody, nobody, should die from AIDS related illnesses,” says Dr Sindisiwe Van Zyl, who works for the Anova Health Institute, an NGO distributing ARVs, in Johannesburg. But people are still dying because they either refuse to take these drugs or start treatment when it is too late. “Patients don’t want to take ARVs,” explains Van Zyl. “It’s a traumatic experience for people. It’s like marriage: it’s forever.” Desmond admits he became troubled when his doctor told him to start taking ARVs. He had worked as an HIV and ARV counsellor for many years for the Treatment Action Campaign (TAC), educating and encouraging others, and still he struggled to start treatment. “It wasn’t a decision I made overnight.” Antiretroviral therapy (ART), a combination of three or more different ARVs, is “all or nothing” according to Van Zyl. This lifetime commitment can be daunting. “I felt like it was an extra burden,” says Desmond. He had just started to accept his HIV status and share that ‘burden’ with his family, when he was told to start ART. It was difficult to agree to “taking ARVs every single night for the rest of my life”. “Luckily, I was used to being around people who are HIV positive who were taking ARVs and living a happy healthy life,” he says. This knowledge, and the support from his family and friends, allowed Desmond to fight his fear of ARVs and begin treatment three months ago. ARVs have been described as a miracle drug and are trusted by health care providers. “AIDS is the end of the road,” claims Van Zyl. With a sigh of relief, she adds, “We no longer have to go there.” ARVs stop HIV from developing into AIDS. They have saved countless lives. However, fear often forces people to turn to traditional or alternative medicine first. “Patients are entering the system when they’re already on death’s door,” Van Zyl says. She blames this on the “horror stories” people often hear about the side-effects of ARVs. “Patients become so petrified they don’t take their medication.” There have been great improvements since the early days of ARVs. Also, people react differently to treatment. “Side-effects don’t happen to everyone,” insists Van Zyl. Before Desmond started treatment he was afraid he would develop severe and noticeable side-effects. He warned his family about this so they would not be shocked. “I only experienced dizziness and bad dreams for two weeks,” Desmond explains, relieved at how manageable and short-lived his side effects were. Desmond is fortunate: his family supports him which has helped him get through this difficult time. This is not the case for everyone. Siya Dlomo* fears discrimination, and has kept his status secret since he found out he was HIV infected in 2001. Desmond calls this “self-discrimination” and explains that when someone is afraid to disclose their status they prevent themselves from receiving support. They have to fight the battle alone. Siya cannot share his burden with his family, like Desmond. Because of this he has suffered. After two failed attempts to kill himself he was admitted to Fort England Psychiatric Hospital. He spent four months in the facility last year before the doctors told him he could go home. “I was shocked to see home,” he recalls the day he was released. “I went inside and sat on the bed and listened to the radio. That’s when I realised I’m nothing in life.” The only thing that helped Siya out of this depression was finding out he was going to be a father. “I have a responsibility to Siya Junior,” he says as a rare smile brightens his face, briefly disguising the usual grave expression. His girlfriend only found out about his HIV status when she realised she was pregnant. She was shocked to learn she was also infected with the virus. Siya did not tell her because he feared she would be hurt and blame him. Her reaction came as a surprise. “She said this is our problem now: let’s stick together.” Support from family or friends can help a person begin treatment and take their ARVs every day at the same time. But Desmond soon learnt that he also had to find strength in himself. It is the last night of the Arts Festival and Desmond is out with his friends. It is almost 8 o’ clock. He gets up from the table where his friends are drinking, joking, laughing, smoking. His friend looks at him, “Stay, we’re just starting to have fun. You can skip your pills just for one night”. Desmond still feels guilty for skipping his medication that evening. He knows he risked compromising his treatment, and his life. ART is saving Desmond’s life but he still has to try and fully accept them. “I trust them, but I’m still watching them.” *Names have been changed Grey Box ARVs can be accessed for free at any primary health care centre in Grahamstown: • Settlers Day Hospital 046 622 3033 • Anglo African clinic 046 603 6144 • Middle Terrace clinic 046 603 6102 • V Shumane clinic 046 603 6077 • Raglan Road clinic 046 603 6084 • Joza clinic 046 603 6026 • Extension 7 clinic