Stories

Cochlear Implant Surgery – A lived experience

Introduction
A cochlear implant is a surgically implanted electronic device that provides a sense of sound, to a person who has a severe to profound hearing loss or a moderate to profound sensorineural hearing loss. During the past three decades, the development of implantable hearing devices has progressed from a medical and engineering challenge to a proven clinical solution (Hearing Implant Centre, n.d.).  Kelly grew up Deaf and has been a strong member of the Deaf Community since discovering her Deaf identity at the age of sixteen, when she was introduced to Auslan. Auslan is the sign language of the Australian Deaf community. It was recognised by the Australian government as a “community language other than English” and the preferred language of the Deaf community in policy statements in 1987 and 1991 (Deaf Australia, 2010). Prior to learning Auslan, Kelly had learnt Signed English whilst attending a primary school for Deaf children. She is also bilingual, English is her second language. When Kelly removes her cochlear implant (processor) and hearing aid, she is a Deaf person. Auslan is her first language and her preferred mode of communication. When she takes off her devices, Auslan is her only mode of communication. In her words, she will always be Deaf, she will always have her Deaf family and community, she will always have her Deaf identity, and it will always be her life. Having a cochlear implant has not changed, nor will it ever change, who she is.  This paper is her story; her lived experience of two cochlear implant surgeries, the first unsuccessful, and the second successful.

The Surgeries
Diagnosed as profoundly deaf at nine months of age, Kelly had some residual hearing in both ears. She was fitted with her first behind the ear hearing aid at age one. At eleven years of age, she lost the residual hearing in her left ear due to unknown causes.

In 1992, when Kelly was twelve, she underwent her first cochlear implant surgery on her left ear. At this time, cochlear implant surgery on children in Australia was still a relatively new procedure, having only been officially approved for children in 1990 (Judge, 2013). Having undergone the required preoperative assessment and testing available at the time, Kelly was deemed a suitable candidate for a cochlear implant. She was the first child in Western Australia to undergo cochlear implant surgery.

Surgery is generally performed in three hours. Kelly’s mother recalls the ENT surgeon who performed the operation informing her after five hours that the procedure had not been successful. He advised that with potential new technology, Kelly may have access to a better alternative in the future.

Kelly recalls waking from surgery, being surrounded by nurses. Without her hearing aids on, she had no communication. She felt dizzy and disorientated. She had a painful incision behind her left ear that was bleeding heavily and no cochlear implant. It was left to her mother to inform her of the outcome of her operation. Without an Interpreter to facilitate communication in a language medium that was appropriate to her, Kelly’s understanding of what had happened was hindered. Along with the disappointment she experienced, Kelly remembers feeling angry, confused and frustrated. During the remainder of her stay and following her discharge from hospital, she was not offered any professional help to deal with the psychological trauma that she was experiencing as a result of the unsuccessful surgery. Kelly remembers her life being thrown into chaos. She became aggressive both physically and emotionally. In her words, she became an out of control teenager. Three months later, Kelly’s mother was put in touch with a Psychologist through her local church. Kelly spent the next three years learning to control her behaviour and trying to work through her anger through sessions conducted in written and spoken English due to no access to Interpreters.

Twenty three years later, when Kelly was going through the process of deciding whether to undergo a second cochlear implant surgery, she and her mother finally got some clarity on what had happened during her first operation. During her routine preoperative evaluation for the second surgery, her ENT Specialist carried out some background research into her first operation.
During cochlear implant surgery, the surgeon makes an incision behind the ear and carefully lifts the skin and tissue to uncover the mastoid bone. A small depression is made in the mastoid bone where the body of the implant is placed. A hole is drilled through the bone to reach the cochlear. (Cochlear Awareness Network, 2007-2015). An MRI revealed that because Kelly’s mastoid bone was thick, it was necessary for the surgeon to drill deeper than usual to reach the cochlear. The surgeon wasn’t aware of this fact until he began the surgery. After five hours of drilling through the mastoid bone, it was deemed too risky to drill any deeper and the decision was made to stop the surgery.

With knowledge as to why her first surgery had been unsuccessful, Kelly’s greatest fear and concern was that a second surgery would also be unsuccessful. Her ENT Specialist assured her that refinements in surgical techniques since her first operation meant that there was now a way of drilling through a thick mastoid bone. Since her first operation, cochlear implant surgery had developed into a safe procedure and complications were now considered atypical. He was confident that he could perform the operation successfully and with his support, she made the decision to go ahead. Kelly chose to have the surgery performed on her left ear again. If the surgery failed again, she would still have the use of her hearing aid on her right ear. Kelly underwent her second surgery on 6 May 2015. The surgery was successful. Following her device being switched on three weeks later, Kelly has been hearing sounds she has never heard before.

Conclusion
Under the guidelines of the Western Australian Language Services Policy 2008, the WA Department of Health developed the WA Health Language Service Policy to minimize the health risks associated with miscommunication across key points of a patient’s journey through the health system. The policy acknowledges that language should not be a barrier to health care. This includes people who are deaf or hard of hearing. (Department of Health, 2011).

What this meant for Kelly was that, unlike her first surgery experience, throughout the pre-operative and post-operative process of her second surgery, she had a legal right to access information in her preferred language. An Interpreter was provided to ensure that she had a clear understanding and realistic expectations of the benefits and limitations of implantation. Kelly was thus able to make an informed decision to go ahead with the second surgery. Provision of interpreting services has remained in place throughout all post-operative appointments of her rehabilitation program.

Having experienced an unsuccessful cochlear implant surgery, why did Kelly, whose preferred mode of communication is Auslan, choose to undergo a second surgery?
Although she is a strong member of the Deaf community, Kelly is also very involved in the hearing community. She is the only Deaf person in her workplace, her family are predominantly hearing including her two children and being bilingual is an important aspect of her life. In Kelly’s words “Having a cochlear implant will never replace using Auslan. My husband is Deaf, we use Auslan all the time. If I take my cochlear (processor) and my hearing aid off, I am a Deaf person. I will always have my Deaf identity, it will always be my life.”

It is well documented that cochlear implants and sign language each have their own advantages. Kelly did not take the either/or path. Instead she chose both.

References

Cochlear Awareness Network. (2015). Questions people ask about Cochlear Implants. Retrieved from http://www.c-a-network.com

Craig, K. (2015, August 11). My lived experience of Cochlear Implant surgery      [Personal interview] Conducted with Paraprofessional Auslan/English Interpreter.

Department of Health. (2011). WA Health Services Language Policy. Cultural Diversity Unit.

ENT Today. (2007) CI Myths | Cochlear Implants in New Zealand. Retrieved from      http://2ears2hear.kiwi.nz/resources/ci-myths 

ESIA Hearing Implant Centre. (n.d.) Retrieved fromhttp://www.hearingimplantcentre.org.au

Judge, A. (2013) Implants for deaf children. Heroes of Australian Science: Technology.  Macmillan Education AU