Country & Site	South Africa – Khuma, Stilfontein
Organisation	Lefika La Ka
Main AHD Area	Paediatric AHD, Referral & Linkage, ART Adherence

What Was the Problem?

As part of household visits to children living with HIV who were experiencing poor viral suppression, the community team set out to visit three households identified by the health facility. However, only one child could be located at the address provided. The other addresses were either incorrect or outdated, highlighting a significant challenge in patient follow-up and continuity of care.

The child who was located was a 12-year-old girl whose story revealed a critical gap in the HIV prevention and care pathway. Although she had been born to a mother living with HIV and was therefore HIV-exposed, she had tested negative shortly after birth and was never retested following prolonged breastfeeding. Her caregiver believed that the negative birth test meant the child was no longer at risk and was unaware that repeat HIV testing should have been conducted.

Years later, the child became seriously ill. She developed a persistent cough, significant weight loss, poor appetite, and increasing weakness. When medical care was eventually sought, investigations confirmed both HIV and tuberculosis (TB). By the time she was diagnosed, she was already experiencing symptoms associated with advanced disease.

The case highlighted how easily HIV-exposed children can be lost from follow-up when caregivers are not adequately informed and systems fail to ensure ongoing testing and monitoring. It also demonstrated how delayed diagnosis can lead to preventable illness and place children at risk of Advanced HIV Disease (AHD).

What Did the Community Team Do?

• Conducted household visits to children with poor viral suppression.
• Traced and located the child through community follow-up.
• Provided education on HIV, AHD, treatment adherence, and available support services.
• Encouraged participation in caregiver support groups.
• Identified gaps in follow-up systems and demographic data management.

What Changed?

• The child was successfully linked back to ongoing care and treatment.
• Her TB treatment progressed well and her health improved.
• The caregiver gained a better understanding of HIV and AHD.
• The caregiver expressed willingness to participate in support groups and seek further
  education.

Why This Matters?

This story shows how HIV-exposed children can be lost from follow-up for years if repeat testing and routine monitoring do not occur. Community tracing not only reconnects children to care but also identifies caregivers who need information, emotional support, and practical guidance.

Key Lesson

Early diagnosis alone is not enough. Strong follow-up systems, caregiver education, and community support are essential to ensure that no child living with HIV is left behind.