Today, 24 March, is World TB Day and the slogan for this day is ‘Reach the 3 million’. The World Health Organization estimates that out of the 9 million people a year who get sick with TB, a third of them are ‘missed’ by health systems. Many of these 3 million people live in the world’s poorest and most vulnerable communities and are among marginalised populations.
TB is curable, but with the development of Multi Drug Resistant (MDR), a life threatening condition that is difficult to treat, the need for these patients to receive palliative care has also risen and many of those with MDR-TB are co-infected with HIV.
Fortunately for Koketso, a young patient diagnosed with MDR-TB, he received just such life-saving support from a children’s hospice in Johannesburg, South Africa. This is his story as told to Busi Nkosi by his mother.
In December 2009, Lerato Mofokeng, then a Cotlands Community Caregiver met Koketso and his mother at a shopping mall in Soweto. Lerato immediately realised that the boy was sick and spoke to his mother. His mother disclosed that Koketso was HIV positive and receiving treatment at one of the local clinics. A single parent, his mother struggled to make ends meet since his father had died in 2009.
Lerato put the wheels in motion to have him admitted to her organisation’s home based care programme so that she could assist his mother with caring for him. Within a week Koketso became so seriously ill that he was admitted to the Cotlands In Patient Unit (a children’s hospice) to be monitored and cared for under the close supervision of professional nurses. There he was found to have Multi Drug Resistant TB (MDR-TB). According to South African legislation, he had to be transferred to Sizwe Tropical Disease Hospital where he stayed for 3 years receiving treatment. This treatment included taking 8 tablets and 3 types of syrup twice a day as well as daily injections from Monday to Friday. The side effects from the treatment included occasional nausea and vomiting.
The care Kokesto received at the hospital was excellent. Within 3 months he was feeling better and after 6 months he was able to play with other children and attend school. He completed his Grade 3, 4 and 5 at the hospital’s primary school. The hospital also had a social programme for children which took them out to visit places of interest. There were other activities to keep children busy after school and Koketso loved gardening and playing his favourite sport, cricket. His family could only manage to visit him twice a month as the hospital was very far from their home.
Koketso was discharged from the hospital in February 2013. But coming back home has created some challenges of its own such as having to make new friends. He registered for Grade 6 at a local school but this has not worked out for him. Walking to school carrying heavy books was difficult for him as he is still weak and suffers from shortness of breath. As a result of his illness, he has poor vision so he was not able to see the board and was also finding it difficult to cope with the demands of the curriculum. He also had to deal with teasing from schoolmates about his size as the illness has caused stunted growth. For these reasons Koketso no longer attends school. He says he misses school and gets lonely during the day when all his friends are at school so his mother is looking for a place that offers activities that can keep him busy during the day. Cotlands has once again been asked to help out to see how they can help Kokesto to continue with his education.
Koketso still goes for regular reviews at the hospital and has his sputum checked every month by the local clinic. He continues taking his antiretrovirals and his mother is taking good care of him.
You can read more about TB and World TB Day at: http://www.who.int/campaigns/tb-day/2014/event/en/
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