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 – www.justgiving.com/Corey-Williams
Robert Mandara
June 9, 2014
It took me almost 20 years to summon up the courage to get an implant and to wade through all of the different opinions. For most of that time I was firmly in the “No, I’ll never have it done!” camp. Moreover, I would have refused to get an implant for a child. Then I met a lot of people with implants and couldn’t find one who wished they hadn’t had the operation. Well, my implant has been turned on for a couple of months and I’m delighted! Now I know what the world sounds like through an implant, I wouldn’t hesitate to get a deaf child implanted if that would give the child the best chance of hearing. I’m not saying that Corey is wrong in her choice but would encourage her to keep doors open. If this is the state of the technology today, the future for implants looks very bright indeed.
Leah
June 9, 2014
Hi there Corey,
You’ve made the right decision. Go with your heart, you’re the mother, trust your instincts & intuition! Una is hearing well with HA’s so why rush into the unknown.
Besides, technology is soaring ahead all the time, who knows what will be available by the time Una is old enough to make her own decisions.
I envisage neat diamond earrings with built in microchips!
All the best & good work mama!
Leah
Jim Cromwell
June 9, 2014
Thank you for writing such an open letter.
Ruth
June 9, 2014
I have pendred syndrome and wear hearing aids in both ears as I am profoundly deaf (between 90-118dB in both ears) but alas I am a professional flautist. I have a music degree, currently teach over 50+ hearing students flute/recorder and music theory and play in the weekly Wind Orchestra, and I held a flute recital in Chelmsford last Saturday evening. I have advanced flute playing students which requires a lot of listening, instruction and feedback. That is just my comment about hearing aids and how it has given me a career too.
Methusalada
June 9, 2014
Thank you for your letter. I think you have made the correct decision for your family today, maybe tomorrow shall be another day for reconsideration.
Hartmut
June 9, 2014
Congratulation for this correct and humane decision. You are to be commented for the bold decision.
It is important before deciding a medical solution, whether to implant or not, to consider the issue: is being deaf bad, undesirable, or unhealthy for the individual affected and for humanity.
To be deaf is OK, is healthy, is not being defective. Becoming Deaf is a gain for the deaf individual as well as for the society.
An aside note: the expression of “passing an audiological/hearing test” means the opposite in the subconsciousness of deaf people than what hearing people would think. A deaf person, seeing his inability to hear being confirmed by a test would say, he passed the test, while a hearing person would say the contrary. It is like “I passed to be deaf”.
I am deaf, but not my ears.
Hartmut
Dan Schwartz, Editor, The Hearing Blog
June 9, 2014
Two quick questions: How old is Una now? Also, a normal cochlea has 2-3/4 turns: How many turns ar in each of hers? [This goes to threading the electrodes into them.]
Linda Richards
June 9, 2014
Absolutely the right decision.
I know of several people for whom implants did not work. For the most part, they’re okay but you can see how much they wish they hadn’t been interfered with or, as you say, a statistic. Three I know of did not have ‘happy’ lives – including one lass who was implanted upon three times – so determined were the surgeons to add her to their list of ‘successes’ but all these implants failed with horrible consequences.
I also have friends who have had implants and, from what I’ve seen, there are four characteristics the ‘successful’ ones have – they have quite a bit of residual hearing, (and by virtue of that hearing, clear speech), they are confident, happy, balanced people, they are fluent users of BSL and members of the Deaf Community taking part in Deaf events and the like.
The useful residual hearing bit aside, you can give your daughter the chance of the other three. Actually, you’ve already started….
Wishing you well and if my mother (of three Deaf children) was around, she’d be right behind you. Although we were born before the cochlear implant era, we were her children first and foremost and were not for ‘fixing’. In those days, she had very little support and the oral/aural/do not sign bandwagon was beginning to seep through the NDCS at the time. Her later research into the subject for her OU studies made her a passionate advocate against implants.
What you’ve written should be part of the information pack that is given to parents/possible implantees (along with William Mager’s articles on his experiences also published on TLC).
I’d say Una is one lucky girl!
Oh Dear
June 9, 2014
‘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 is a human, not a statistic, and I would not be bullied into elective surgery.’
‘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.’
Precisely what I’d always said.
donaldo of the wasatch
June 11, 2014
In 1953 my parents were told – hearing aids will not help! 2 years later hearing aids and I spoke on the first day. I know what it is like to be told it won’t work and defy all the expectations day in and out, year in and out. I did extra ordinarily well. My loss ranged from about 70 db and quickly fell off the charts around 120 db. Then the 70 db became 80 db and more and more sound went “south.” So when the threshold average hit 105 db the first CI and then 2 years later a second CI in January of 2014. No regrets. But the excuse of your child not being a statistics is like trying to be anti statistics and think you can win a statistical battle. You can’t. The Deaf Culture views even hearing aids as genocidal. That is nonsense. How can the Deaf Culture teach and nurture anyone to be self sustaining and acceptable in the general society if it is so anti technology and the “fix” excuse. If the battery in your car dies, you fix it. If you break a bone you fix it. If your water heater bursts, you fix it. If you have a learning disability you fix it. If you have a visual impairment you fix it. So not “fixing” is lame. It is like the apology that is followed by “but” – the self contradictory conclusion to rationalization. I admire your tenacity and the hearing aid venue may be correct now, but it will eventually run it course. It never gets better – never. So be informed, well informed about the CI option because you, your daughter, or both will have to eventually cross that bridge to being able to more effectively communicate and interact. I believe that the CI will evolve significantly and the real genius is in all the accessories that they come with. A CI I believe is only 50% of the solution. Those accessories and wiring your residence to interface with the CI is so awesome. In some ways I have it better than even hearing people in some situations. When you can grasp that capability – then you can tell her you did what was best. Not saying any “but”!
Hartmut
June 11, 2014
“The Deaf Culture views even hearing aids as genocidal.”
That is a pure lie! Typical from a CI proselyte. Your next sentence about nurturing Deaf Culture and anti-technology shows blatantly your ignorance of the culture and even of the term “culture”
Inability to hear is for the liberated Deaf persons not a loss. We don’t search for it, therefore it is not a loss. Your analogy of car battery, broken bones, water heater, etc. with hearing is indeed lame, to use your word. Learning problem is not a disability or something broken, but a different learning style which the educational profession needs to find a way to reach those with different learning styles. Lo and behold, some of them learned better by “becoming deaf,” through learning sign language.
Audism needs to be reduced significantly in the society. Such an obsession with “fixing’ hearing is sickening. We have become victims of audism of our parents and educational and medical professionals.
I am deaf, but not my ears.
Hartmut