Every breath counts: Living with TB through a child's eyes

Susan Purchase

I am sitting at a table surrounded by smiling children. We are next to a large, glass window and I can see the playground outside.

The younger children are shrieking as they play in the sunshine, chasing each other and clambering over a wooden jungle gym.

The older kids are with me. They just got home from school, and we are playing a game of Jenga. There is the usual nervousness in each child as their turn approaches, and then jubilation on the successful extraction of a wooden block. Ordinary games, ordinary children, an ordinary day. Except these are not ordinary children. Each of these children has multidrug-resistant tuberculosis, an illness that they know could rob them of the rest of their lives.

I am busy chatting to them, trying to understand their hopes, their fears, their perspectives. Most of them are shy. They tell me their names but struggle to share their thoughts or experiences. One little girl, however, is more forthcoming.

Caitlyn* tells me how when she got sick, her whole body hurt, her sheets were wet with sweat, and she could not run or play.

She tells me about the tests they did, pricking her arm and making her breathe saltwater so she could cough up sputum.

Eventually her mother told her she has “the big TB”.

She tells me how scared she was when she was admitted to the TB hospital, and how she cried during that first long, lonely night.

I also hear about the 12 tablets she must swallow each day, and about how her tears and urine are stained bright orange! She says she is frightened of “this other tablet”, because she knows it could turn her skin dark – which would make her friends laugh at her.

Apparently, she really misses her favourite foods. The hospital school is “sometimes fun” but she wishes she could write her Grade 5 tests, so she does not have to repeat the year.

She feels sad when thinking about her friends going to Grade 6 without her. After I have visited Caitlyn’s hospital bed and been introduced to her five fluffy toys, I say goodbye, and head back to my office, my heart aching for these children, who are sick and far from home. But then I remind myself that these are actually the lucky ones. These are the children who have had their TB diagnosed and are taking medicine.

Six hundred children die every day from this preventable disease. Of the children who die, 95% have not accessed any form of care.

On National Children’s Day, which is observed annually on the first Saturday in November, we should remind ourselves of the many challenges children with TB in South Africa face.

Diagnosis is often delayed as children have very few TB germs, and don’t develop typical patterns of disease.

Children have immature immune systems, and often get severe types of disease, such as TB of the lining of the brain (TB meningitis).

Also, TB is both caused by and causes malnutrition, especially in young children.

Treatment of TB is long and complex, especially if the TB germ is like the one Caitlyn has and has developed resistance to the commonly used antibiotics. There are very few child-friendly TB treatment formulations, meaning that caregivers often need to crush and administer very bitter tablets to very young children. There is still stigma associated with TB and children with TB are subjected to bullying and isolation.

The disease does not affect individuals but households, and children usually acquire TB from someone they live with. TB inevitably causes economic hardship for the whole household, especially when breadwinners can no longer work, and when the costs of accessing treatment are catastrophic.

As I reach my park home office, a cloud moves in front of the sun, causing a gloomy shadow.

When I think of TB I think of shadows. Shadows in the lung fields on a chest X-ray. Dark shadows under the eyes in a body consumed from within.

Patients hiding in the shadows, embarrassed about their “dirty disease”.

The long shadows cast by TB through history, as it decimated families, and whole generations. Modern families in the darkness of despair, after TB has caused both economic devastation and social isolation. And of course, the children, vulnerable, dependent, living in the shadows of an unwanted, uninvited yet frighteningly common disease.

But shadows are only the absence of light. And there is light on the horizon for children with TB.

Diagnostic tests are getting better, and children are being diagnosed more often and much earlier. Portable chest X-ray machines, tongue swab tests and molecular tests that can give a result in hours were just fantasies not long ago, but now they are here.

Pharmaceutical companies and researchers are starting to think about children early on and are developing better tasting formulations for children that are also dispersible and easy to swallow.

Treatment for TB is also shorter and treatment for drug-resistant TB no longer requires long hospital admissions, or the antibiotic injections which made a third of children go deaf.

And there are medicines freely available for TB prevention in children, which means adults with TB can breathe a little easier knowing they can do something to prevent their children from also getting the disease.

The slogan of the TB research group I work for is “Every breath counts”.

This is something I truly believe. Every breath we take matters. But somehow the soft, gentle breaths of the youngest in our society matter the most of all.

Let’s remember our littlest TB heroes as we celebrate National Children’s Day this year.

*Not her real name

* Purchase is a research clinician at Desmond Tutu TB Centre in the Faculty of Medicine and Health Sciences at Stellenbosch University.

Cape Times