Corey Williams: Why I said no to cochlear implants for my daughter

Posted on June 9, 2014

Una, meaning “unity” and “only one” was born at home.

We spent the first two days together in my bedroom. On day three we made a move to the living room where my dogs had been waiting to see what all the fuss was about. Having never seen a baby before, the barking was intense and I’m sure most of the neighbours heard the commotion, but Una, quite clearly, did not.

Nobody believed me when I said that I thought she couldn’t hear, even when later on she failed the newborn hearing screening. They said come back in a fortnight, she will pass then. But she didn’t. Everyone was still so sure that Una could hear that I went to the next appointment on my own.

They ran more tests and the initial results showed a severe to profound loss. Had I heard of cochlear implants? They wanted to discuss that next time and would arrange hearing aids for Una but I musn’t expect anything from them, she was so deaf that they would probably be of minimal assistance.

My head was spinning. I had never met a deaf person, let alone heard of implants. I didn’t know what this diagnosis did or did not mean, but I wanted my baby fixed. If there was an implant they could give her then we would have it. They had already said that hearing aids just weren’t going to do the trick.

It was over seven weeks before Una got her first hearing aids and I had accepted that we would just have to roll with the punches from now on. In this time I had researched cochlear implants and talked about this option with my husband. The one thing we agreed on, was that we could not put our daughter through that.

Una was 11 weeks and 5 days old when she was “switched on”. As the battery compartments clicked shut, Una took in her environment cool as a cucumber. Don’t expect her to be able to place the sounds or to hear speech, was what they said.

But Una looked from voice to voice, even looking out the window as an engine rumbled past. The child who was so deaf that these aids shouldn’t work was proving everybody wrong.

Una was doing well with the aids. Her dad shut down and refused to listen to talk of implants which came up at every appointment. But I was silently considering all the options. I had to admit now that my initial reaction of saying no was born of my own fear. But the fact was, I do not have to live out my life as a deaf person in a predominantly hearing world, Una did, and for her sake I had to at least consider all avenues.

As Una turned from a baby into a toddler, we were told that she had Pendred syndrome. Her father and I are gene carriers. We hadn’t known because our eldest daughter is hearing. Una also has Mondini malformation, a very rare condition.

This diagnosis changed everything again, because Pendred syndrome is a degenerative condition. What Una got from her aids now could go at any time, the slightest tap to the head or simply adolescence could wipe her hearing out for days, weeks or possibly forever.

Through learning BSL and being involved with the local deaf children’s society, I had been able to meet other deaf children and adults as well as hearing mums who had gone through the seemingly agonizing process of deciding to go for implants.

I had not realized how controversial implants were, as it seemed to me to be the “done” thing. Don’t get me wrong, I think implants are incredible and have undoubtedly changed lives for the better and I admire the parents I know for having the guts to go ahead with the surgery. But every time the subject came up, my gut reaction was still a resounding no.

Maybe it’s not the case, but every time the professionals mentioned implants, I felt like they wanted Una to have them so she could be another case study or statistic. Born just 18 years after the first implant, this procedure was still considered to be new.

The harder they pushed, the more I resisted. Una is a human, not a statistic, and I would not be bullied into elective surgery. That’s how it felt at times. And there is the word, elective. As my good friend, who has children with implants, said to me, “elective” sticks in your throat as you walk away from theatre and every time there is an infection, a blow to the head, pain.

So now I thought, forget my own fear, the divided opinions of the deaf community, what the professionals would like me to do. I had to swallow it all and make a decision that would benefit Una alone in the long run. There are no guaranteed results with implants. I could put her through the stress and pain for nothing.

Implants are for children who get too little from their hearing aids and though we don’t know how, Una was doing just fine with hers. To me, surgery is to fix something that is broken and I did not see a broken child. Una wasn’t suffering, in pain or dying because of her deafness.

At every twist and turn, Una, “only one” has blown expectations out the water by doing her own thing – and that’s when I realized, implants are not about “right” or “wrong” and it’s not for anyone, hearing or deaf, to judge anybody’s decision about them. Every person is unique and so the choice must be peculiar to that child.

For some parents I know, implants were right for them straight away. Their children have a similar loss to Una, but their situations are different to ours for a number of reasons. But I don’t have to explain myself to anyone other than Una. I had to ask myself one question – when Una is old enough to understand that she is a deaf person in a hearing world, can I look her in the eye, tell her what I did and still feel ok about it? Yes I could.

If Una’s hearing goes completely tomorrow, ask me again where I stand. I can’t predict how I would feel. I often think about how I am a hearing person making a life decision on behalf of a deaf person. I will never fully understand what it is to be her. I hope Una will be comfortable in her deaf identity.

I have to constantly remind myself, deaf, is Una’s normal. Should things change, I hope that Una will be old enough to make the call herself because this was not an easy “no” for me to say. If she wants implants in the future I will fully support her. They are incredible, but they are not for us.

Corey Williams is a mum of two daughters, one hearing and one deaf. She lives on the Wirral, works in Liverpool, and is currently training to be a counsellor. She helps out at the WDCS ( Wirral deaf children’s society ) Teen team group and is raising funds for the NDCS –

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