Managing the children’s ward at Brooklyn Chest Hospital has strengthened my advocacy especially for families learning to love their children within a different cast after the diagnosis of Tuberculosis meningitis (TBM), stage 3. This is quite different to the diagnosis of cancers or rare disease as the diagnosis is mixed with stigma, shame and the hopes of financial support after this dreaded diagnosis. Often my job is advising the junior clinician referring the patient for rehabilitation to adequately counsel families of the possibility of death while admitted at Brooklyn Chest – I often hear their discomfort during our conversation and sometimes they provide feedback regarding the difficulty of conveying this message, leading this discussion with families. Death does not come quickly with TBM, if we are lucky, it’s only death of the child who the mother has given birth to but even within this context families and the patients affected should be offered dignity walking this journey. These stories are often not told, but there are facilities available in the Western Cape where these families can be supported, distressing symptoms can be managed and with a full complement of healthcare professionals (nursing, Paediatrician, Occupational Therapy, Psychologist, Speech therapist) the family can be prepared for the future journey where analgesia is optimised, safe feeding is ensured and resources are provided to continue a ‘regular’ life after the death of your physical self.
