Caring for an HIV-positive child - one mother's story

When HIV-positive Brenda* had her first child in 1998, he lived for just five months his immune system overwhelmed by illness. Abandoned by the baby's father, Brenda wallowed in misery for a while, but then met Mark, who supported her through her grief and became her partner. He and his infant son, Paul, who were both HIV-positive, became Brenda's family. "When I met Paul he seemed very sick. I had been doing some reading and thought he had to be taken to a hospital, where he was diagnosed with the virus," she said. "At that point, we thought he was finished ... he was so thin ... he never used to eat." Paul was taken to Gertrude's Children's Hospital in the Kenyan capital, Nairobi, where he was put on a course of antiretroviral (ARV) therapy in 2001. "They took care of him. It was really expensive, but we had to do it," Brenda said, as Paul, now 10 years old and a lively, healthy looking boy, sat by her side. "The doctors did what they had to do, and here you see him today. I really feel proud to see him here." The journey has been far from easy for Paul, Brenda and Mark. "He gets reactions to the medication - skin rashes, all sorts of sores, and his appetite goes - so you have to try to blend the drugs with the food he likes." Paul developed resistance to his medication in November 2005. "Just recently he started losing weight again, which was worrying the doctors as well. We have an appointment every month, we have to come to be checked," Brenda said. "We had to go for expensive tests and needed to raise money - about 43,000 Kenyan Shillings [US$600]. The test was taken to a laboratory in South Africa to assess Paul's resistance," she said. "It took about two weeks, and now he has to follow a different treatment, which we receive from Gertrude's." Paul's health was not the only worry - to give their child the best care possible, both Brenda and Mark needed to be healthy themselves, so they were also tested and put on a course of ARVs. Telling their families about their HIV status was another hurdle Brenda and Mark had to face - so far, she has only had the courage to tell her mother, who has been very supportive. "Only she knows that I'm HIV-positive. No one else in my family or my husband's family knows," she confessed. "My husband is reluctant to tell his family because he knows what their reaction would be. His family really looks up to him, as he's the most learned. His parents are diabetic - it would really devastate them." About two years ago, Brenda felt she wanted another child to complete her family. "We were really scared about having another baby, after the loss of my first one, but after several sessions of counselling, encouragement, and precautions taken and so many tests, I saw a doctor who took me through all the steps," she said. "I got pregnant, and I had this lovely angel - a baby girl. Now I look at her and think she's a reason [to keep going], and now Paul has a sister," she added, beaming as she held her baby girl, now 18 months old, in her arms. The little girl has so far tested HIV-negative, and her mother feels confident she will continue to do so. Brenda knows she and her family will not have a smooth ride, but she is prepared for the challenges ahead, and grateful to have been given a second chance at life and love. "There have been ups and downs. With the medication, sometimes Paul vomits but, so far, after that he gets better," she said. "Sometimes he gets moody, which you have to understand because it happens to me as well. He looks up to me, so it's all up to us - the parents - to set an example, to show it's a way of life we have to accept, to carry on." * Names have been changed