It’s hard for any parent to accept their child has a serious illness or disability. Two working mums tell Rose de Freitas what it’s like to bring up a daughter when each has HIV
 Illustration: Getty Images |
Twenty-nine-year-old Promise Mthembu is talking about when her 12-year-old daughter, Mbali, was diagnosed with HIV: “She just smiled a lot when I tried to tell her. It’s hard to know what she thinks. She can’t speak because of her other disability. I explained to her she would have to take medication for the rest of her life, because she has a serious, transmitted illness. But it’s impossible to know if she really understands.”
Mbali was born with cerebral palsy. The right side of her body doesn’t work and she is wheelchair-bound.
Mbali’s HIV diagnosis earlier this year came as a complete shock to Promise, who says her daughter had never been sick at all.
“When I found out my status,” Promise recalls: “my daughter was four years old. I assumed I had got infected after I had her. But last year she was due for a hip replacement operation because of her palsy condition; the doctor suggested she have an HIV test before the operation, just to be sure.
“I didn’t think to get her tested when I was diagnosed, maybe because I couldn’t face it. I was so young anyway. I got pregnant with Mbali when I was 16 years old. It was a prolonged birth in a local township near Durban. I had to have a Caesarean section but it was very late and her brain had already been damaged. There was also no motivation in South Africa to find out her status, but in retrospect I wish I had tested her when I came to the UK two and a half years ago.”
 Why can’t I see her? Promise planned to be photographed with daughter Mbali for PN, but has just been denied access to her. |
Young Mbali was put on antiretroviral treatment after being diagnosed. Her CD4 count was low and viral load high, and the doctors were concerned about the effect of the hip operation itself. She takes nevirapine, 3TC and AZT twice a day in liquid form. So far, she’s had no reaction to it although she does have problems swallowing.
Promise and Mbali communicate using the language of body gestures. It’s called Makaton. Mbali learns it at the special London school she attends for similar disabled children. “When she wants to use a pen or have something to eat, she gestures a certain way, and we learn to copy it,” explains Promise.
The school Mbali attends do not know her HIV status, except for the school nurse. “I don’t think the teachers really need to know,” says Promise, “other than the nurse who for obvious reasons needs to be aware for medical necessity. It took me a long time to find a school for Mbali here in London and I don’t want to jeopardise her education. It would open up lots of issues if I disclosed to anyone else there, and she has enough to contend with anyway.”
Soon after Mbali’s HIV diagnosis, Promise had another hurdle to face. The social services decided that her daughter should be taken into care. Despite trying to get THT to help fight her case, Promise agreed to give up Mbali in August. Until then she rented her own flat and Mbali lived with her.
“I really fell out with social services over it, but there’s nothing I can do. I travel a lot with my job at ICW (the International Community of Women living with HIV) and I’m a single mother of a physically-disabled child with HIV. I can’t afford to pay for registered childminders when I’m at work or abroad. Social Services said they’d take her away anyway even if I disputed it. Nothing can happen now until 2005 when I will qualify for a British passport. I’m on a work permit until then.
“I really fell out with social services over it, but there’s nothing I can do. I travel a lot with my job at ICW (the International Community of Women living with HIV) and I’m a single mother of a physically-disabled child with HIV. I can’t afford to pay for registered childminders when I’m at work or abroad. Social Services said they’d take her away anyway even if I disputed it. Nothing can happen now until 2005 when I will qualify for a British passport. I’m on a work permit until then.
As global advocacy spokesman for ICW , what message does Promise have for other mothers of positive children?
“Parents have to make their own decisions about their children, but I do feel guilty I didn’t get her tested earlier. I was afraid I couldn’t have coped myself. I’m not sure I would have survived if I’d known she was positive back in South Africa, but I just wish I’d had her tested when we arrived in the UK. As a child with cerebral palsy, she needs so much more support ,and I sometimes feel guilty that as a parent I can’t protect her more.
“I know I’m not the only mother who has been afraid to test their child for HIV. There are other mothers too who have said to me, they just can’t face it. If their child is not sick, they hope for the best by putting the problem aside. I also think Social Services need to be a lot more aware of the issues around confidentiality and disclosure.
“Mbali’s a very strong little girl. God knows, she’s lived with HIV all these years and is such a happy child. She still smiles so much and has never got sick. My consultant says she stands a chance of living a long, adult life despite her double disability. Back in South Africa, I would be given a much bleaker picture. I still think myself very lucky to have her.”
It took Cynthia Namukasa five years to adjust to her new situation when baby Susan (not their real names) was diagnosed with HIV at three months old. “She was always sick and I knew it wasn’t right. She had lots of colds, flu and ear infections. My first child was healthy and it seemed very different with Susan. The doctors did all the usual tests then they decided that because of my country of origin, Uganda, it might be best to do a last, final test: for HIV.”
Cynthia joined her husband here in the UK in 1992. She was 25 years old and had Susan nine months after moving to the UK. Both parents had tested at one time or another as HIV negative. She recalls: “When the doctor told me, my first reaction was that my daughter’s blood had been swapped! It didn’t even occur to me that I might be positive too even if she was. Then it sunk in. I tested positive myself two weeks later.
“It was a very hard time for three or four years. We had been a typical happy nuclear family till then. It divided us completely.”
During these difficult years, little Susan struggled with illness too. “It was back in 1992 and there was virtually no HIV treatment that had been researched for children,” recalls Cynthia, “They put her on co-trimoxazole (Septrin) to prevent her from catching pneumonia and other infections. But I’d heard such horror stories back in Uganda that I wasn’t very adherent with her. I also said no to AZT when it was first recommended.”
Nonetheless, Susan’s health started to improve, and at five years old she got over the bout of endless infections and hospital visits. “Perhaps this was because at this time, I myself had come to terms with my own diagnosis and hers too. The family atmosphere suddenly became happier and I guess we began to feel less afraid for Susan, because they say the first five years are the worst for the child. I myself never got that sick, but I did go on treatments and I am doing very well on my latest regime. Susan, however, now 11 years old, has only ever taken Septrin, and her CD4 count and viral load are stable” confides Cynthia.
Today, Cynthia is proud of how she and her daughter have come through, but worries a lot about telling Susan about her condition. “I haven’t told her yet. One of the reasons is because she isn’t on HIV treatment but just takes Septrin three times a week to keep infections at bay. You see, she’s such a lively child, sporty and popular at school. I don’t want to destroy her confidence yet. She hasn’t asked me any questions, but I do leave out lots of info on HIV in my household. All my family knows ‘mummy works in an HIV organisation’.”
Only the school nurse is aware of Susan’s status. “It is hard to make a decision about telling the school. I do know of a child who was bullied by a boy there when they found out about a fellow pupil’s HIV.
“My son, who is a little older, is starting to ask questions. Why does his sister have to be so careful if she gets ill? My biggest fear is that someone else will tell my daughter. That would be terrible. I worry about how she will react when I do tell her about her HIV. She’s such an outspoken child. Am I trying to protect her to protect myself? What will she think of me? How will it affect the rest of my family? I honestly don’t know what is best when it comes to disclosure sometimes, but I know it will be soon as she will reach adolescence shortly and the subject of sex will certainly come up.”
Susan attends Positively Women’s children’s support group, which doesn’t make status known among the children, and it obviously helps that Cynthia works at PW fulltime too.
“I try not to make HIV rule my whole life. My husband and I made a definite
decision that we would try and lead a normal life outside of HIV and not become
obsessed by it like some families I know. He works in a profession that has
nothing to do with it. He has been absolutely wonderful. He has a soft spot
for Susan, and I’m sure this is part of how he comes to terms with it
himself.
“When I stopped dwelling on my HIV, things got easier at home. I try very hard not to spoil Susan and treat her like a sickly child; perhaps that’s why she’s become so resilient. She is the one who stands up to me more than the rest of all my children. I have another younger daughter too who was born later using MTCT precautions; she is negative.”
What does the future hold for both Cynthia and Susan?
“I hope my daughter will do well and take lots of strength from my own example; that having HIV shouldn’t stop her from doing anything she wants to. After all, she’s got my genes in her!”
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