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Born with HIV

born with HIV

If you’re born with HIV you can still lead a normal life and do all the things your peers do, including having relationships and children of your own one day.

The good news is that these days you can live a normal lifespan if you have HIV. What’s important is that you:

  1. take your treatment correctly,
  2. attend medical appointments,
  3. look after your general health – this will help you to stay well.

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


Finding out

In the UK most experts think children with HIV should be told when they’re between about six and nine, as at this age you can take in the information more easily. Children who are told when they are much older often feel angry that this important information has been kept from them.

Lots of children and young people are living with HIV and there is great support available, including an organisation called Body and Soul if you live in London.


I want to know more about HIV and how it's passed on

You may be wondering whether you can still be healthy if you have HIV, whether it will be OK to have sex when you grow up, or whether you can do all the things other people do. The good news is that you can.

When you’re born with HIV, the virus was passed to you from your mother. This might have been while she was pregnant and you were in her womb. Or it may have been while you were being born or if you were breastfed.

HIV has to get from one person’s body into another. It’s passed on through only a few body fluids: blood, sexual fluids and breast milk.

Something which is important to know about is that people who are on effective HIV treatment and have an undetectable viral load cannot pass on HIV.

The viral load is the amount of HIV in your blood, measured in a blood test. An undetectable viral load does not mean there is no HIV present - HIV is still there but in levels too low for the laboratory test to pick up. It can take up to six months from starting treatment for your viral load to become undetectable.


How often does mother-to-child transmission occur?

In the UK all pregnant women are offered an HIV test, because if it’s known the mother has HIV, transmission to the baby can usually be prevented.

Everyone is recommended to take HIV treatment when they’re diagnosed with HIV, including pregnant women. Doctors make sure they give birth safely to protect the baby. After the baby is born, it’s given some HIV medicine as well, and is fed with formula milk instead of breast milk.

When you do all these things there is less than 1% chance of the baby having HIV – this reduces to 0.1% if the pregnant woman is on treatment with an undetectable viral load. Before these things were done, there would have been a much higher chance of a baby catching HIV from its mother – if no interventions are made the transmission risk is 30-45%.


In what circumstances is mother-to-child transmission more likely?

If you were born in a country which wasn’t able to do all these things, you would have had a higher chance of catching HIV. There can be complex reasons why children may be at a greater risk of HIV infection in poorer countries which may not have very good medical facilities, or where it’s hard to offer people good medical care and follow them up.

It could be that your mother didn’t know she was HIV positive when she was pregnant or breastfeeding, that she was finding it hard to cope or she had no way of accessing the medical help that she needed.

Sometimes it’s just not possible to prevent HIV being transmitted from a mother to her baby.


Your feelings

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

Some young people feel like they want to stop taking their medication or seeing their doctor as they just don’t want to think about HIV, unfortunately this is likely to result in you getting ill, so if you’re struggling please ask for help.

If you find your feelings too difficult to deal with, you can contact THT Direct.

You can also get in touch with Body and Soul in London. They provide services to children, teenagers, young people and their families if someone in the family is living with HIV, including 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.


More information for people born with HIV:

 

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The Information Standard: Certified member

This article was last reviewed on 28/11/2017 by Anna Peters

Date due for the next review: 28/11/2020

Content Author: K. Virani

Current Owner: K. Virani

More information:

What age?
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Body fluids
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How likely is mother to child transmission?
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Screening for HIV, syphilis and hepatitis B
NHS Choices
February 2015

British HIV Association guidelines for the treatment of HIV-1-positive adults with antiretroviral therapy 2015 (2016 interim update)
Laura Waters, N Ahmed, B Angus, M Boffito, M Bower, D Churchill, D Dunn, S Edwards, C Emerson, S Fidler, M Fisher, R Horne, S Khoo, C Leen, N Mackie, N Marshall, F Monteiro, M Nelson, C Orkin, A Palfreeman, S Pett, A Phillips, F Post, A Pozniak, I Reeves, C Sabin, R Trevelion, J Walsh, E Wilkins, I Williams, A Winston
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Children, HIV and AIDS
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2016 Aug 15;72(5):579-84. doi: 10.1097/QAI.0000000000001019

HIV treatment as prevention and HPTN 052
National Center for Boiotechnology Information
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Cohen MS1, McCauley M, Gamble TR

Sexual Activity Without Condoms and Risk of HIV Transmission in Serodifferent Couples When the HIV-Positive Partner Is Using Suppressive Antiretroviral Therapy
Alison J. Rodger, MD; Valentina Cambiano, PhD; Tina Bruun, RN; Pietro Vernazza, MD; Simon Collins; Jan van Lunzen, PhD; Giulio Maria Corbelli; Vicente Estrada, MD; Anna Maria Geretti, MD; Apostolos Beloukas, PhD; David Asboe, FRCP; Pompeyo Viciana, MD1; Félix Gutiérrez, MD; Bonaventura Clotet, PhD; Christian Pradier, MD; Jan Gerstoft, MD; Rainer Weber, MD; Katarina Westling, MD; Gilles Wandeler, MD; Jan M. Prins, PhD; Armin Rieger, MD; Marcel Stoeckle, MD; Tim Kümmerle, PhD; Teresa Bini, MD; Adriana Ammassari, MD; Richard Gilson, MD; Ivanka Krznaric, PhD; Matti Ristola, PhD; Robert Zangerle, MD; Pia Handberg, RN; Antonio Antela, PhD; Sris Allan, FRCP; Andrew N. Phillips, PhD; Jens Lundgren, MD
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JAMA. 2016;316(2):171-181. doi:10.1001/jama.2016.5148

New guidance on prevention of mother-to-child transmission of HIV World Health Organisation (2010) 

Many patients diagnosed with HIV today will have normal life expectancies, European studies find NAM (2010)

HIV and the Immune System NAM (2009)

Taking Drugs On Time NAM (2009)

Mother-to-child transmission of HIV, World Health Organisation HIV/AIDS (2012)