They were the babies who were not expected to survive. With no suitable drugs available for those born with HIV in the late 1980s, around 50 per cent were dead by the time they were 10. Today, however, many children born with HIV are now approaching adolescence and some are even parents. Their prognosis changed dramatically following the introduction, in 1997, of triple-drug therapy ” a combination of three medications that work together to fight the virus (but which won’t to kill it). Death rates consequently dropped five-fold.
‘Children diagnosed with HIV who are started on these medicines do extremely well,’ says Professor Di Gibb, a paediatrician and epidemiologist who works at Great Ormond Street, and is working on research into children with HIV at the Medical Research Council Clinical Trials Unit.
There are currently over 1,250 children known to be infected with HIV in the UK, and around 90 per cent contracted the virus through their mothers. Sixty to 70 per cent of the children recently diagnosed in this country were born and infected abroad, largely in African countries, compared to 20 per cent of those first diagnosed in the early 1990s.
While the prognosis for HIV-infected children has improved, they do, however, face complications, such as the as-yet-unknown consequences of long-term use of their medicines. ‘It is a little early to be able to forecast how long these children are going to live for,’ says Gibb. ‘It will be into adult life for most, but I don’t want to underestimate the difficulties for these children in terms of living with a chronic illness.’ n
The names of the case studies have been changed. For information and support, contact Children with Aids Charity, tel: 020 7247 9115 or visit www.cwac.org
19, lives in London and is a student
It’s likely that I was born with HIV. My parents and I don’t speak, so we never got to the point of them telling me how I got it. I don’t know whether they’re infected. My mother lives in South Africa, and my father is here.
I found out that I had it when I was about 13. It was my dad who told me and I don’t think he’s ever got his head around me having it. I felt numb when he told me. I didn’t want to take the medication because if you’re going to die you’re going to die. I rebelled, I was suicidal, and I didn’t want to be at home, so I was put in care. From the age of 14 to 18 I was either in a children’s home or being looked after by foster parents.
Now, I lead a pretty normal life, doing everything a 19-year-old would want to do. Some of my friends know, and I’ve never had a bad reaction from anyone I’ve told. I’ve only had one sexual partner and he was one of the first people I told. I don’t want to have children. I know there’s a chance of my child having HIV and I don’t think I could cope with that.
I know if I continue to take the medication and keep healthy, my HIV status is likely to take a very long time to develop into Aids. I’m happy with who I am now, and you can’t be miserable. You have to stop questioning yourself because you only live once. I could have 40, 50, or 60 years. I’m not angry: if I didn’t have HIV I could have been one of those teenage mums with four children, and that would be awful.
22, lives alone in London and works part-time in a shop
My mum was infected through a blood transfusion following a miscarriage. I was born in England after my parents moved here from Zimbabwe. They separated and I grew up with my mum. She died of Aids when I was five, which is when I was told by a social worker that I had HIV. I didn’t know what it was and replied, ‘Can I go and play football now?’ It didn’t matter to me as I’d just lost my mum.
My brother was fours years older than me, and he and I were allowed to stay in our house because they saw us as a special case. For the first year we had five different foster carers. Social services didn’t think I was going to live very long. My brother died of Aids when I was 13 and my father died when I was 20, but I don’t know what from. You just carry on with life.
When I was in secondary school I realised what HIV was. I didn’t tell anyone because of the stigma, although the close friends I’ve got now know. I feel as if I live two different lives with the friends who know and those who don’t. I try not to let it affect my life: you name it, I do it ” clubbing, raving…
One of the hardest things is relationships, and I didn’t have sex until I was 18. I always wear a condom, but I don’t tell everyone who is just a one-night-stand that I’m infected. I tell them if they’re long-term relationships. I’ve got an 18-month-old son, but recently broke up with his mother after four years. The baby wasn’t planned ” there were times when we were careless about using a condom, but neither she nor the child is infected. It’s great to be a father, as it’s motivated me to do more in life. I want to travel and become a designer.
I’m not worried about developing Aids as I know I could go outside and get hit by a bus. I have sat and cried and thought, why me? But now I don’t worry. If you get depressed it will mess your head up.
15, he lives in London with his father, who is unemployed
I got HIV from my mum, who became infected through a blood transfusion following a car crash in Kenya. She died of Aids when I was seven. I was upset for a long time. They immediately gave me some tests and then my dad told me that I was infected too. I didn’t think anything of it.
I found out what it meant when I was about 11. I told a girl and she told her brother, and then he told everyone else. Someone said to me that I could die of it. I then decided to do whatever I wanted, not what people wanted me to do.
I’ve been excluded from school for the past two years, but I was only bad in a cheeky way. Some kids have asked me if I’ve got HIV, but I’ve always said no. If anyone found out, I might try to hurt them. I started taking medication at seven, but I’ve been off it for 18 months as the hospital said I could. I want to go into the Army, but my dad says I can’t because of HIV. [The Army does not accept applicants who admit to having the virus.] If I can’t do anything that I want to do then I will just have to do something illegal.
I don’t worry about getting Aids, but I do worry that the children I’ll have will be infected. I’m excited at the thought of having children, but I would never tell a girl I had HIV unless I was going to stay with her for the rest of my life, because girls have got big mouths. I always use a condom as I don’t want to give anyone HIV ” it’s like giving someone cancer.
I feel angry that I’ve got it and it makes me want to go out to do bad stuff, like robbing or fighting people. People are just walking around the street all happy and they don’t know what’s really going on. I think they’re too happy. I don’t care for them because I know they don’t care for people with HIV. If they did, then there would be no stigma. I feel like the odd one out, and if I didn’t have it, things would be different. I worry that I might die sooner than everyone else and I worry about what people would say if I just died out of the blue.