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This is an archive of the Treatment Action Campaign's public documents from
December 1998 until October 2008. I created this website because the TAC's
website appears unmaintained and people were concerned that it
was becoming increasingly hard to find important documents.
The menu items have been slightly edited and a new stylesheet applied to the site. But none of the documents have been edited, not even for minor errors. The text appears on this site as obtained from the Internet Archive.
The period covered by the archive encompassed the campaign for HIV medicines, the civil disobedience campaigns, the Competition Commission complaints, the 2008 xenophobic violence and the PMTCT, Khayelitsha health workers and Matthias Rath court cases.
When a woman is pregnant she hopes for a healthy baby that she can take care of until that child becomes an adult. In 1998 I became pregnant with my first child. I was only 18 years old and I had just started dating and had sex for the first time. During my pregnancy my doctor asked to take some bloods for testing and I agreed. He just told me that he would be testing for infections that might affect the baby and he never explained to me what type of infection he would be checking for.
When the results came back, the doctor told me that I had tested positive for a rare illness but he would have to book me into a hospital and give me some pills that would make my baby fine. I did not ask him what the illness was. I went into hospital for two weeks and was given some tablets. I remember one of the night duty nurses asked me if I knew what those pills were and I told her that I didn’t know but my doctor had said they would help me have a healthy baby.
On 22 January 1999 I delivered a baby boy. His name was Bulelani. I breastfed him as I thought that was best for a newborn. He became sick when he was two months old and was admitted into hospital for gastroenteritis. From then onwards, he was in and out of hospital. He had lost so much weight and he developed pneumonia when he was four months. This was so hard on me because I was young and had just been diagnosed with tuberculosis (TB). While he was in hospital, I had to travel every morning to bath him and be with him during the day. He never became better until he was diagnosed with whooping cough. He died on 19 June 1999. I became depressed but never received any counseling. I just moved on with my life as if nothing had happened.
On 14 June 2002 I gave birth to a beautiful baby girl. Her grandmother named her Nokuzola meaning “the humble one”. I had a caesarian section delivery due to premature labour possibly caused by depression. I was depressed because things were not going well between my partner and me. I remember during one of my antenatal visits, my gynaecologist advised me to do an HIV test and I refused. I said to him I had tested negative a few months back but I was lying. The truth was that I was scared of getting tested and knowing my status as I had heard many people say that if you tested HIV-positive you would die within a few months. I was scared of dying and I didn’t have enough information about HIV/AIDS.
Nokuzola started coughing when she was two months old and she was diagnosed with pneumonia. She had to be hospitalized and that meant travelling to the hospital everyday again. The thought of testing for HIV never crossed my mind because I believed that if you breastfed your baby, she would be protected from infections.
Nokuzola became ill at three months. She did not respond to antibiotics, so the doctor asked me if he could test her for HIV and I agreed. She tested positive. She developed pneumonia and had to be transferred to ICU. Her health declined steadily. I asked if there was treatment for her AIDS and, for the first time, I found out about antiretrovirals.
Unfortunately she was on a oscillator by this stage and too sick to start treatment. One of the doctors called me aside and told me that my daughter was in so much pain and that I had to make a choice to keep her on the oscillator, sedated until she was about three or four years old by which time she would be brain damaged or to switch off the machines and let her die peacefully without any more pain.
This was very hard but I had to decide. I asked the doctors to let me hold her in my arms when they switched off the machines. After Zola’s funeral, I tested HIV-positive. I was put onto antiretroviral treatment.
My doctor told me to take my medication twice a day but he didn’t explain to me about adherence so when I felt better in 2003, I stopped taking my medication.
If our clinics had pamphlets about HIV/AIDS or the nurses educated pregnant women about HIV/AIDS then I would have had the chance to save my kids by making sure that both them and I received ARV treatment. Due to the lack of information about HIV and ARV treatment, I became very sick when I stopped taking my treatment.
My CD4 count dropped. When I did a CD4 count in 2004, it had dropped to 3. I had TB for the second time and oral thrush. I did not know where to go for treatment since the remedies I was taking (called Amazing Grace) was not effective. I finally realized that I had AIDS and I was admitted to a hospice in Boksburg. This is where I received more information about HIV/AIDS and its treatment. I then had to restart my ARV treatment. I experienced some side effects but I received treatment for them. I was discharged from the hospice after two months and I was taking my medication at the right times and my mother was my treatment supporter. I regained my strength and picked up some body weight. Now I knew how to manage my HIV and my family was very supportive. I never thought I could conceive again because I was scared of losing another child again.
In August 2004, I joined the TAC and I met more people who were living with HIV. This gave me hope as I could see that there were people who were living ordinary lives although they were infected with HIV. I attended treatment literacy training where I learnt more about the science of HIV and its treatment and about opportunistic infections.
In 2007, I met my current partner who knew about my status and we started dating. We used protection during sexual intercourse. One day the condom broke during intercourse and I did not bother going to buy the morning-after-pill because I didn’t think I could conceive after being so ill. In March I found out that I was pregnant. I was so excited because now I knew that with good HIV management and treatment I could have an HIV-negative child. My partner was also excited about having a baby. During my pregnancy, I experienced some complications because my placenta was lying low and I had a few urinary tract infections so I had to take early maternity leave in order to get enough bed rest. I received so much support from my family, friends and colleagues. My doctor and I discussed ways of delivery, I decided on having a caesarian section, and we set the date for 12 November 2007. All this time I had taken my antiretroviral treatment, which consisted of zidovudine, lamivudine and lopinavir/ritonavir two times a day. I made sure that I took my medication on time because I did not want to pass HIV onto my son.
On the morning of 8 October, I started having lower abdominal pains but I didn’t think it was anything serious because I was only 33 weeks pregnant but they became worse by midday. I only went to the doctor in the afternoon. After examining me, my gynaecologist told me that we had to deliver the baby the following morning. Therefore, my son Qhayiya was born prematurely on the morning of 9 October 2007 weighing only 1.6kg. He was immediately sent to Neonatal ICU because he had breathing problems. He was put onto a ventilator to assist him with breathing and he was given nevirapine syrup twice a day. His breathing improved on the second day and he had nasal cannula for oxygen supply. He was feeding well with a nasal tube but the doctor started him on bottle-feeding on the third day because he was showing signs of being able to suck a bottle. His health improved and the necessary tests were done on him and all came back negative. He was discharged on 28 October 2007. I was so happy to take him home and the nurses reminded me not to forget to give him his nevirapine syrup. When I got home, everyone was happy to have an additional member of the family. Giving him the syrup was easy because I gave it to him it at the same time when I was taking my antiretroviral treatment (i.e. 9am and 9pm). The pediatrician told me to bring my son back when he was six weeks old for him to get tested for HIV using the PCR test.
The six weeks seemed like a long time but eventually on 20 November, I took him to the paediatrician for HIV testing and to the clinic for immunization. I was told to come back on Friday, 23 November for the results. I will never forget that day, when the doctor told me that my son had tested negative. I cried tears of joy, I was so happy that finally I was getting a chance of raising an HIV-negative child.
I wish that all young women would get all the necessary information about HIV in pregnancy in order to prevent the transmission of HIV from mother-to-child. The government needs to make sure that all HIV-positive pregnant women get antiretroviral treatment to reduce the number of infections in newborn babies.