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The silent world my son lives in

Nearly 360 million people worldwide—about the entire population of the United States—have disabling hearing loss [1]. Of these, 32 million are children. Kaitesi Batamuliza MukaraCARTA Cohort four fellow, spoke with a mother whose child has a hearing impairment and wrote this article for the 2017 International Week of the Deaf which takes place from 18 to 24 September.

Claude had normal hearing but all this changed when he got meningitis, an infection of the protective membranes that surround the brain and spinal cord (meninges). After he recovered, he could not respond when spoken to or to other children while playing. He was four years old.

“When I tried to speak to him he was unfazed but when touched he would turn and stare. He could not hear,” the mother adds.

He then started speaking incomprehensible words. Initially, this was assumed was because Claude’s family had moved from Congo where they spoke Lingala and Kiswahili to Rwanda where Kinyarwanda was spoken. But one year later, Claude could not speak a single word.

This was during the war in Congo in the late 90’s and thus treatment was hard to come by. However, the initial diagnosis at a nearby hospital was that his eardrum was perforated. Three years later, another hospital showed the problem was that sounds cannot be transmitted to his brain. Later a specialist in Rwanda confirmed that while Claude heard sounds, they would not be transmitted to his brain. This is called sensorineural hearing loss. The doctor in Rwanda asked that Claude seeks further treatment. However, his family returned to Congo and with it, ending his treatment for his hearing loss. That was in 2000 when he was 8 years old.

His growth has been slow and he is unhappy all the time. He used to go to school with other hearing-impaired children but he saw no benefit in learning. He dropped out when he was 17 years old. Today, he does not say a single word. He has forgotten how to write all he learnt. His use of sign language has not made him good in expressing himself as if he is asked one thing he responds with something totally different.

To date, he is the only child in his family who has a hearing impairment.

“We wished that he would get well and be like other children. We expected the doctors would make him well. When I see how disturbed, lonely, frustrated, and uncomfortable he is among his peers I wish it could change. I wish he could hear again,” the mother tells me.

But Claude has profound hearing loss, which implies very little or no hearing. Therefore, he will not benefit from a hearing aid. His only hope is a cochlear implant which an electronic medical device that replaces the function of the damaged inner ear by providing sound signals to the brain. The total cost of a cochlear implant (evaluation, surgery, the device, and rehabilitation) in Africa ranges from a minimum of USD 30, 000 to 50, 000. The cost is not only exorbitant but such specialized services are not available in Rwanda. Consequently, this means that Claude will not live a fulfilled life.

Although he learnt how to use sign language, he is not self-reliant financially and falls far much behind his hearing peers. Claude’s story is not different from many other children who face hearing loss early in childhood, especially in developing countries.

Hearing loss is not only a social concern but has economic implications. For instance, unaddressed hearing loss poses an annual global cost of 750 billion dollars in terms of costs of educational support, loss of productivity, and societal costs (social isolation, communication difficulties and stigma) excluding the cost of hearing devices. Societal costs – the result of– add a further $573 billion each year. The estimate of the cost to the education sector of providing support to children who are 5 to 14 years with unaddressed hearing loss is $3.9 billion.

Moreover, only 1 in 40 people in developing countries who require a hearing aid cannot get it due to the prohibitive costs and the inaccessibility to the devices. Consequently, in developing countries, adults with hearing loss also have a much higher unemployment rate as the World Health Organisation shows. For those employed and have hearing loss, a higher percentage of them are in the lower grades of employment compared with the general workforce.

Hearing loss is caused by various factors including genetics, complications at birth, certain infectious diseases, chronic ear infections, the use of particular drugs, exposure to excessive noise, and ageing. In addition, three in five cases of childhood hearing loss is due to preventable causes. Such as infections such as mumps, measles, rubella, meningitis, cytomegalovirus (a contagious virus that spreads via bodily secretions) infections, and chronic otitis media (inflammation of the middle ear).

Other causes are complications at the time of birth, such as birth asphyxia, low birth weight, prematurity, and jaundice. Lastly, expectant mothers who use ototoxic medicines (that can damage the ear and cause hearing loss) during pregnancy may put their children at risk.

These are concerns that world leaders discussed during the 70th World Health Assembly resolution of 30th May 2017 which looks at prevention of deafness and hearing loss. Specifically, member states, including Rwanda, to “integrate strategies for ear and hearing care within the framework of their primary health care systems, under the umbrella of universal health coverage, raising awareness at all levels and building political commitment.”

In addition, states were urged to establish suitable training programs for the development of human resources in the field of ear and hearing care; and ensure the highest possible vaccination coverage against rubella, measles, mumps and meningitis, in line with the immunization targets of the global vaccine action plan 2011–2020.

Dr. Mukara is trained in the medical and surgical management and treatment of patients with diseases and disorders of the ear, nose, throat (ENT), and related structures of the head and neck. The Otolaryngologist and Audiologist who lives and works in Rwanda leads the ENT department at the University of Rwanda’s College of Medicine and Health Sciences. She is also a senior lecturer in the School of Medicine and Pharmacy.

Side Bar:

Acquired causes of hearing loss:

  • infectious diseases including meningitis, measles and mumps;
  • chronic ear infections;
  • collection of fluid in the ear (otitis media);
  • use of certain medicines, such as those used in the treatment of neonatal infections, malaria, drug-resistant tuberculosis, and cancers;
  • injury to the head or ear;
  • excessive noise, including occupational noise such as that from machinery and explosions;
  • recreational exposure to loud sounds such as that from use of personal audio devices at high volumes and for prolonged periods of time and regular attendance at concerts, nightclubs, bars and sporting events;
  • ageing, in particular due to degeneration of sensory cells; and
  • Wax or foreign bodies blocking the ear canal.

Source: World Health Organisation

[1] Disabling hearing loss refers to hearing loss greater than 40 decibels (dB) in the better hearing ear in adults and a hearing loss greater than 30 dB in the better hearing ear in children. The majority of people with disabling hearing loss live in low and middle-income countries.

A person who is not able to hear as well as someone with normal hearing – hearing thresholds of 25 dB or better in both ears – is said to have hearing loss. Hearing loss may be mild, moderate, severe, or profound. It can affect one ear or both ears, and leads to difficulty in hearing conversational speech or loud sounds.

Edited by Eunice Kilonzo, CARTA Communications Officer.


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