Growing up with HIV

The lifespans of people who live with HIV these days are the same as those of their negative peers, as long as they:

1. take their treatment correctly,
2. attend medical appointments, and
3. look after their general health.

Remember: once you’re on effective treatment and have an undetectable viral load, you cannot pass on HIV.

In the UK most experts recommend that children with HIV be told about their status when they’re between the ages of about six and nine, as at this age the child can more easily understand it. Children who are told when they’re older often feel angry about this important fact being kept from them.

There’s lots of support out there for children and young people living with HIV. In London there’s an organisation called Body and Soul and the Children’s HIV Association (CHIVA) operates across the UK.

When you’re born with HIV, the virus was passed to you from your mother. But vertical transmission, also known as mother-to-child transmission (MTCT), is not the only way in which HIV is transmitted. More commonly, HIV is passed on via sex or by injecting drugs with shared injecting equipment.

HIV is passed on through only a few body fluids: blood, sexual fluids and breast milk.

Transmission is dependent on the HIV positive person’s viral load – if the viral load is undetectable, the virus can’t be passed on.

In the UK all pregnant people are offered an HIV test, because transmission can now be easily prevented.

If you receive an HIV diagnosis when pregnant, you’ll be put on treatment right away. The doctors will instruct you on how to protect the baby during pregnancy, delivery and once the baby is born. You'll also be advised not to breast feed and the baby will be given a course of HIV treatment. 

Thanks to those strategies there’s now less than 1% chance of the baby having HIV. This falls to 0.1% if you're on treatment with an undetectable viral load. Back when those interventions were not known and commonly used, the risk of transmission was 30-45%.

There are complex reasons why children may be at a greater risk of HIV infection in poorer countries. Some may not have very good medical facilities, or it might be hard to offer people good medical care.

Some people don’t find out they are living with HIV while they’re pregnant or breastfeeding. Others might find it hard to cope or have no way of accessing the medical help that they need.

Sometimes when people find out they’re HIV positive they want to blame someone. These feelings are completely natural and understandable.

Some young people might be tempted to stop taking their medication or seeing their doctor in order to stop thinking about their HIV. This is very dangerous and very likely to result in serious health problems.

If you find HIV too difficult to deal with, you can contact THT Direct on 0808 802 1221.

You can also get in touch with Body and Soul in London, or CHIVA nationwide. They provide services to children, teenagers, young people and their families if someone in the family is living with HIV. This included support groups especially for children and young people.

If you find you’re struggling with any aspect of living with HIV, please ask for help. There’s lots of support out there.