Which parent would not try a ‘miracle cure’ for deafness?

Headlines have read ‘Bionic Ear’, miracle cure for deafness and similar wildly misinformed comments.  In a country where no amplification options are offered for deaf children, the potential to obtain access to cutting edge technology in China is just too tempting. It is a very expensive option and requires surgery, so it does not come without its dangers.

For parents in any part of the world having a deaf child can be a challenge. Usually, parents have perfect hearing and have no experience with deafness. In high-income countries newborn hearing screening helps to identify deafness early. In the UK hearing aids and cochlear implants are free and a Teacher of the Deaf will contact the family within two working days of identification to provide family support.

However, in Myanmar parents have no formal support. As concerns grow and their child fails to develop spoken language, the first visit will be to a family doctor. The usual advice is to not worry and to be patient. By the age of 5 or 6 years, parents will be told, the child is deaf and should go to one of the two schools for the deaf in Myanmar, Yangon or Mandalay.

All parents will try to do their best and seek help wherever they can.

One set of parents we met had been to China to get a cochlear implant for their child. With the belief that this would provide their child with hearing they proceeded despite the huge financial outlay. Their hope was that this would assist their son to gain language.

A cochlear implant is a powerful tool but without the vital aftercare which involves: careful mapping three weeks after insertion where the individual hearing levels of the child are set, ongoing maintenance, appropriate teaching and support – little may be achieved. 

For the little boy we met, it quickly became apparent the cochlear implant was not functioning. Parents had received no aftercare, no guidance of checking the cochlear implant or troubleshooting problems that arose.  

The parents were led to believe that simply having the implant would mean their son would acquire language.  The challenges were that he attended a school for the deaf which, at the time, only used sign language. As there was no spoken language in class there was simply no appropriate input to the implant.   Parents had no received guidance on how best to talk to their child, what to expect or how to proceed. Once the implant developed a problem there was no one to seek advice from or any other way of getting help.

The parents also thought he had no useful hearing in his non implanted ear. One can only imagine the disappointment and heartbreak felt by these parents when all their best efforts and a great deal of money came to nothing.

Fortunately, Mandalay was able to establish that this boy in fact had good useable hearing if he was provided with a hearing aid.

Sadly, we had no spare hearing aids to allow us to fit one there and then. On our next visit, he would be our priority. Whilst the school had no contact with Cochlear Implant providers in Myanmar the Mandalay School For Deaf UK team did and we were able to ask for someone to visit and see if they could help with the cochlear implant. 

The challenges are twofold:

  • Parents were highly motivated but now had little faith in technology as no improvements in language had been achieved and therefore needed very positive support and guidance to make the best use of a hearing aid that non-specialists have said were useless
  • Those working at the school noted that cochlear implants don’t work and felt hearing aids were similarly problematic

It is only by training staff and parents in the potential of amplification and input required to gain benefits, on how to check all modes of amplification and change classroom practice to ensure children hear enough relevant language daily that will form a foundation for their own language.

By providing positive training, support packages and resources there is the chance of ensuring a positive language environment for all the deaf children at the school.

Mandalay School for Deaf UK has positive links with the Cochlear Implant company in Myanmar and could facilitate support for the child, family and school.  Cochlear implants do offer a form of amplification that enables profoundly deaf children to access the spoken word and sounds around them, to enjoy music and participate in conversations.

However, they only do this if well fitted, appropriately mapped to individual needs, maintained regularly and if they are used in a spoken language environment.  The possibilities are there but training is fundamental to ensuring children get the best out of all amplification options.

Mandalay School for Deaf UK hope to forge strong links with the CI programme in Yangon and offer joint training and locally produced resources.

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