Tamsin Coates: My hidden fears for my son

Posted on July 9, 2012

I’m scared. On the outside I look strong, confident and capable as life continues as normal but inside I second guess and fret. I’m admitting this very privately to my computer but now I’m sharing it very publicly. It’s not something I have shared openly with the people I see every day, but I think they know anyway.

In just over a week, I will take my son down to have some anaesthetic, watch him fall asleep and hand over his care to the surgeon whom I am placing all my trust in. Then I will walk away and try and swallow the lump which will form in my throat as I try not to cry in front of Cameron and show him my fear.

Cameron will be having his cochlear implant re-implanted during that surgery. He was first implanted when he was four and a half years old. He had been diagnosed at eighteen months old with a severe to profound hearing loss, which fluctuated and got progressively worse (typical of the syndrome which caused his deafness: Pendred syndrome).

Whilst it took Cameron a bit of time and lots of effort to learn to use the new type of sound the implant provided, it has been highly successful for him. His use and understanding of language developed well, though he has never left behind the sign language he had used initially. His school reports comment on his ability to switch between his use of sign with some of his peers before going back to using speech with hearing peers.

Then at Easter-time this year, his implant had to be removed following an infection -a risk which had been outlined on the consent form I signed so many years ago. For weeks the doctors had tried to avoid this outcome, using different combinations of antibiotics to fight the source of the pain in his head. Unfortunately, the seemingly inevitable happened, and he was explanted.

The weeks it took to resolve the problem exposed us to doctors who had never seen a cochlear implant and questioned whether they could see it in his ear canal, other doctors who were convinced it was his jaw causing the problem, the list goes on and on. Through it all there were periods of time where all I could do was hold Cameron to comfort him as he lay in extreme pain while we hoped the painkillers would take effect.

Through this experience it has been so apparent the strides Cameron, who is now eleven, has made towards maturity and self-awareness. In discussing his feelings around having his implant removed, his subsequent frustration at needing more support in school from an adult and the prospect of another operation for re-implantation he has expressed himself clearly.

Cameron has told my husband and I that he has no wish to be ‘like us’ (hearing), he is happy being himself. Through the difficult parts of his hospital stays he at times removed his hearing aid as well – relishing the silence he has within his world, something he has always done since being a young child. Opting when tired or feeling unwell to rest and have peace without auditory input, relying on sign language to communicate with us. Ultimately though, he wants his implant put back in. His own sense of ‘normality’ includes the access to sound which the implant provides for him and there is no question for him that it is the path he wants to follow.

As a mum I have watched my son writhe in the pain he was experiencing as a result of the infection, and nursed him through his recuperation, often being absent for my other children to do so. I have fought to get him a higher level of support in school even though he resents the need for it. It’s been a long few months and I now face watching my son go in for further head surgery.

I’m scared, scared of the risks and the consequences. Again it has been a massive decision to make. But he wants this surgery, so I have again signed the consent form which lists the potential risks which we now know are very real. Only this time his adolescent signature has joined mine on the form, expressing his desire for the operation to go ahead. This time he has more awareness of the choice being made and has made it clear what he would like to happen.

So in a matter of days I will be there by his side, the fear hidden deep inside as I wait with him to take the first step back towards getting his hearing back.

Tamsin Coates trained and worked as a Speech and Language Therapist for over 10 years. Her training came in useful when she had two sons who are profoundly deaf. She now juggles being a mum to three lively children, writing, running the Wirral Deaf Children’s Society (with her friend Lisa) and raising awareness regarding deaf issues wherever she can.

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