Nasreen Hussain and Amman Gill, audiologists based in London and recent Seekers volunteers in Malawi, share the story of The Katambo Family
In the United Kingdom when a child is born deaf, perhaps as a result of an inherited condition, we have the luxury of genetic counselling. Genetic counselling is conducted by healthcare professionals who have been specially trained to provide advice about genetic conditions. Parents can be made aware of, and prepare for, the risks to themselves and their children. We had always taken for granted the value of genetic counselling until we met the Katambo family on an outreach clinic in the dusty village of Mwangala in Lilongwe, Malawi.
We first met Mrs Lenia Katambo accompanied by her husband: Mr Duwaluwa Katambo. It was clear from the outset that Lenia struggled to hear as she was unable to answer most of our questions. Mr Katambo therefore explained most of wife’s history. Lenia was said to have been born with normal hearing and has a family history of hearing loss (two brothers that are believed to be deaf). Lenia has five children, three of whom she reported cannot hear. A hearing test revealed Lenia has a severe-to-profound hearing loss in both ears. Having said goodbye to Lenia we were not expecting to meet her husband and children later that day.
A couple of hours had passed before we had the pleasure of meeting Mr and Mrs Katambo’s daughters. Mr Katambo was very keen and happy to introduce us to his daughters. Elesi greeted us with a coy smile but Sara was shy and clung onto her mother. Mr Katambo told us that Sara had no speech at all and Elesi had very little. It was for this reason that we took the girls’ history from their father. They are both thought to have a bilateral hearing loss since birth. The girls lip read and their family have devised their own sign language to communicate. Sara is fifteen and Elesi is fourteen years old. However, whilst observing the girls we noticed that Sara displayed a younger level of maturity than Elesi.
Looking into Elesi’s ears and testing her middle ear system was achieved within a few minutes as she understood to sit still. Sara however, kept fidgeting and it soon became clear she was not entirely comfortable with contact from strangers. We took the girls and Mr Katambo to our audio booth trailer in order to conduct hearing tests. The girls sat in separate soundproof booths and were required to wear headphones through which they would hear beep sounds. We needed the girls to press a button every time they heard a sound – no matter how quiet. We had a chain of communication: we gave instructions for the hearing test in English which were translated into Chichewa for Mr Katambo by our Malawian colleagues. Mr Katambo then relayed the instructions to the girls through demonstration and sign language.
After repeated instruction Elesi was able to provide us with some responses during the hearing test. Similarly to her mother, she has a severe-to-profound hearing loss in both ears. We did not have the same luck with her sister Sara. We took many different approaches in attempting to obtain results from Sara and ultimately had to abandon testing as she became upset and showed signs of distress. Hearing tests require extensive concentration and sound proof booths can often feel confined even to those of us that are not claustrophobic. Thus she was taken to our HARK vehicle for a break and an automatic hearing test that does not require responses from the patient was attempted. However, the test does require the patient to sit very still which Sara was unable to do.
We had similar difficulties a while later when Mr Katambo returned, this time accompanied by his 10 year old son Aaron. Like Sara, Aaron did not respond during the hearing test. Although we were unable to obtain a complete picture of Sara and Aaron’s hearing that day, testing can be reattempted when the ABC audiology team visit again in a few months. At this future outreach clinic, Lenia and Elesi will be fitted with hearing aids and custom made ear moulds for which we took impressions. This is not possible at the moment for Sara or Aaron as hearing aids cannot be fitted without important information from a hearing test.
Lenia and her family had never had their hearing tested before. We were privileged to have been part of their first experience of audiology and hope it will not be their last. It is likely that Lenia, Elesi, Sara and Aaron share a genetic mutation causing their hearing loss. It is unlikely that genetic counselling will be available in such rural villages of Malawi in the near future. The Katambo family is just one example of many that could benefit from genetic counselling and that will come from continuing the advancement of audiology services in the developing world. At present, audiologists are able to provide much needed support to deaf families by the way of medical care, hearing aids and raising Deaf awareness. We hope Lenia and Elesi will get on well with their new hearing aids and that progress can be made with Sara and Aaron.
This case study was written by Nasreen Hussain and Amman Gill, audiologists based in London, during their recent Sound Seekers volunteer placement in Malawi with our partner ABC Hearing Clinic and Training Centre.