Republish this article
6th September 2016

HIV in babies: diagnosis & denial

Early treatment with the latest anti-retroviral medication can have a profound impact on the lives of new-born babies with HIV. But a combination of social stigma and late diagnosis make prompt intervention a challenge in the Democratic Republic of Congo (DRC).

Patricia came into the world with the Human Immunodeficiency Virus (HIV). Now aged six, her weakened immune system is under siege from viruses and bacteria. She takes a cocktail of 11 medicines every day to relieve her fever and treat anaemia, chronic diarrhoea and tuberculosis.

HIV is endemic in the community – Patricia is one of around 60,000 children under 15 in the DRC who is HIV positive. But even where effective treatments are available, they are often not used, or are used too late. Just 14% of children with HIV in the country are being treated.

“If we are able to treat children from birth with HIV therapy they can have a completely normal life with a normal immune system like you and me,” says Dr Sofie Spiers, a doctor at the Centre Hospitalier of Kabinda in Kinshasa. “The problem is that here in Congo, stigmatisation of HIV/AIDS is very high.”

As a result, families are reluctant to have their children tested for the disease. In many cases, by the time doctors meet a young HIV victim, the child is already very sick. “Children with HIV are arriving at the hospital at a very late stage with a lot of opportunistic infections.”


Patricia’s mother, Rachel, knows the cost of living in denial. She was told that she had HIV while pregnant with her first child, Heritier, in 2008. “I didn’t accept the diagnosis,” she told the Financial Times, explaining that she had not suffered the weight loss commonly associated with the disease.

“I told my husband and he refused to acknowledge it. He said, ‘They are liars, we can’t be positive.’

Two years later, Rachel became pregnant with her second child, Patricia. Still in denial, she did not receive medicines that could have helped to keep her healthy and reduce her risk of passing the infection to her daughter in the womb.

In 2013, Heritier died of AIDS and Rachel began to feel ill. In pain and underweight, she finally began HIV treatment. Three years later, in January 2016, six-year-old Patricia’s condition worsened and she was hospitalised.

With time and medical care, Patricia’s health has improved but the road ahead is uncertain. The window of opportunity early in her life – when treatment might have spared her the burden of living with a weakened immune system – is firmly closed.

Early intervention

Even when the HIV taboo can be overcome, access to swift and accurate testing is not universal in the DRC because laboratory infrastructure is often lacking or results do not arrive quickly enough.

In some countries, new diagnostic tools are changing the dynamic. Point-of-care tests give almost instant results, allowing doctors to diagnose and treat during the same visit. In some developed countries, home testing kits can offer convenience and confidentiality for adults.

However, diagnosing new-born babies was always considered to be more complicated than testing adults – until recently. Lab-based testing has been preferred to simple point-of-care testing for infants because antibodies detected in blood samples might originate from the mother or the child.

While sophisticated lab tests can offer precise results, it takes longer. Not only can this delay vital treatment by days or weeks, it requires mothers to make a return trip to the hospital to collect results which inevitably means some patients slip out of the system altogether.

Modern point-of-care tests require just a small drop of blood and allow doctors to diagnose, discuss and act promptly – even in infants – increasing their chances of accessing life-changing treatment.

Sadly, it is too late for Patricia.

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