It is very important that children born to women living with HIV are tested for HIV. Ideally, this should happen at birth (see below). But if this didn’t happen, and the child’s mother was, or thinks she might have been, HIV positive at the time the child was born, a child should be tested whatever their age or state of health.

Children’s HIV Association (CHIVA) testing guidelines recommend children are tested if a parent, brother or sister has HIV or it is possible they died of an HIV-associated condition.

Although it can be worrying knowing that a child has a lifelong health condition, treatment and care can only be provided if it’s known that your child has HIV. A delay in starting HIV treatment may mean that your child’s immune system has a reduced chance of recovery. Once you know about your child’s diagnosis, you can be offered support by a variety of services to help your child have a long and healthy life.

The type of test used will depend on the age of your child. Some tests just look for antibodies to HIV; antibodies are a type of protein produced by the immune system in response to an infection. Other HIV tests look for the presence of HIV itself.

If you and your healthcare team know that you have HIV, your baby will be tested at birth to see if he or she has been infected with HIV. This test will be repeated after six weeks and again after twelve weeks. These first tests are looking for the virus itself to see if it is present in the baby’s blood.

If all these tests are negative, you are not breastfeeding your baby, and a sample of your blood has been tested for HIV by the same laboratory, you can be confident that your baby does not have HIV.

HIV is present in breast milk, so it’s important that you bottle feed your baby formula milk, as it’s still possible for a mother to pass on HIV to her baby by breastfeeding. In the UK and other countries where women can formula feed safely, you are advised only to feed your baby with formula milk from birth. This is different to advice in other parts of the world, where breastfeeding is recommended for women with HIV. This is partly because safe clean water, bottle sterilising equipment and appropriate formula milk may not be available. In addition, in many poorer parts of the world, breastfeeding may be lifesaving as it can significantly reduce infant mortality (deaths) by protecting against dangerous infections in infants and babies. This is not the case in the UK where babies who are formula fed also grow up to be strong and healthy. You can read more about feeding your baby in NAM’s booklet HIV & women.

Talk to staff at your clinic if formula feeding may be a problem for you or you are considering breastfeeding. They can give you advice and support, and help may be available to meet the costs of formula and equipment.

For the best chance of preventing HIV, your baby will need to take HIV treatment for a short period after he or she is born. This is sometimes called infant post-exposure prophylaxis, or infant PEP. What sort of treatment your baby has will depend on the HIV treatment you have taken during your pregnancy.

You can find out more about preventing mother-to-child transmission of HIV in NAM’s booklet HIV & women.

The HIV antibody test is not used to diagnose HIV in babies and young infants. This is because antibodies can cross the placenta from mother to infant and be present in the baby’s blood for up to 18 months after he or she is born. An antibody test can’t distinguish between antibodies from the mother and any produced by the baby.

Your baby should have a final test – this time an HIV antibody test – at 18 to 24 months, to confirm that your (maternal) antibodies are no longer present. A negative HIV antibody test result for your baby at 18 months of age is the final test that is done to confirm that the baby is not infected. By the age of 24 months, if there are any HIV antibodies present in a child, this will be because the child has HIV.

If any of these tests have a positive result, the test will be repeated to confirm the result. If your baby is diagnosed with HIV, he or she will be given antibiotic treatment to stop him or her developing PCP, a type of pneumonia (this is often referred to as PCP prophylaxis).

Your baby will be referred immediately to a specialist clinic for children with HIV, so he or she can receive the care they need.

Almost all mothers in the UK are offered an HIV test in pregnancy. If for any reason this was not done and a woman, her child or the child’s father is later found to have HIV, the women’s other children should also have an HIV test, even if they are healthy. It is very important to have older children tested for HIV if you discover that you, your partner or any of your other children are HIV positive.

Do not be afraid of telling your HIV clinic that you would like your children to be tested; clinic staff will be well aware of the importance of doing these tests. HIV services will offer the same confidential service to children who are being tested for HIV as they do to adults and will offer you support regardless of the test result. If your child’s test result is positive, the testing service will also be able to recommend or refer you to HIV support organisations, which can help you start planning how to tell your child about their diagnosis.