Six weeks ago, we took baby No.3 to his two-week hearing test; part of an early screening programme instituted in 2002 to catch hearing problems early, rather than leaving it until children are six months or more.
He failed the test. The readings were negative; the slightly nervous woman who’d done the test said we’d be “referred”, as a matter of course, for another, fuller test at a bigger hospital. “I know it must be heartbreaking,” she said. We didn’t think much of it. “How many children have you screened like this?” we wondered. A couple of thousand, she said. “And how many have you referred, and how many of those turned out to be deaf?” Thirty-odd, and one or two, she answered.
So we went home, and then felt increasingly angry with her. We didn’t agree. She seemed almost to be handing down a diagnosis, at an age when all sorts of things can mimic bad hearing - stuff like vernix in the ear canals, for example.
Later in the week we got the date for the next test, but it was six weeks away, and we had the challenges of trying to get a new baby integrated into family life with two small children. That was plenty.
And we looked up a few things about stuff that can mimic lack of hearing in small babies. A week after that test, we found he’d got an ear infection - his left eardrum burst. At least that explained why he was so grumpy so much. We had to give him antibiotics (strange yellow fluid) three times a day; amazing that he took it.
The date for the next hearing test came closer, week by week. And we looked for the signs that he could hear us. When I took him to the bathroom and ran the bath, he reacted with pleasure, even though he was lying on the floor. When I went to wake him for his midnight feed, he’d stir in his bed. He was fascinated by TV - MTV especially. When I sang the song that his mobile played, he smiled with pleasure.
Except.. was it just him recognising where he was, and associating it with the bath? Was it that I turned the light on when I went to wake him? Was it just the movement on the TV that he liked? Did he just like my facial expressions when I was singing? And there were other things. He didn’t ’startle’ when a door slammed. He didn’t turn towards a voice at the side. But that didn’t mean anything. Necessarily.
The subject of whether he could hear became our elephant in the living room for those six weeks. We didn’t talk about it, because there wasn’t anything we could do about it. But separately, we both did little tests. Snap your fingers by his head while he’s looking the other way. Let off child 2’s pop gun to one side. By last weekend, when we went off for a family weekend, and the test was looming, we could both agree: he can’t hear us. We’d had six weeks to let the idea sink in, and it had. Baby3 couldn’t hear.
And then the day of the test. Drove all the way to a hospital, to the audiology department where (as is the way of hospitals) we waited half an hour and then had to find a way to get Baby3 to sleep. Which we managed. They attached the electrodes to his neck, shoulder and forehead, and stuck an earphone on him.
Already the process was running away from us. Had I had my way, before they started the test we’d have said “Look: we think he’s got significant hearing loss in both ears. Could you start on that premise?”
Instead we were treated like people who’d brought someone in to examine, ignoring the fact that we’d been living with him for all his life. The woman who fitted the electrodes called us “Mummy”, “Daddy” and “baby” - which I found mildly annoying; they don’t do that many tests, surely.
They went through the whole palaver. Three of them, a tall rangy specialist who sat in front of the computer where waveforms danced around incomprehensibly, a woman who just seemed to watch (but also knew what the waveforms meant) and another woman who put the electrodes on and watched Baby, and tried to see reaction where there wasn’t any. They got nothing from the normal test, which puts sounds through the earphones. So they moved on to a neurological test, which - if I understood it right - tests auditory nerve response. Again, nothing. We watched as they tried to hide their body language, but the tiny shakes of the head, the moues, the hands to the chin, the fiddling with the mouse and the graphics dragging lines this way and that on the screen.. and saw them go through the process in 20 minutes that we’d gone through more gently in six weeks, of going from the expectation that he could hear, to the realisation that he couldn’t. It was galumphing. They didn’t ask us at the start what we thought. They just went ahead. And we were both weeping, gently, by the end. Not because it was news we didn’t know, or expect, but because it was a door finally being closed, a verdict being delivered. And also because they were going through it. Rather as you cry at a film.
There’s a line in the film Clockwise, in which John Cleese plays a time-obsessed headmaster trying to get somewhere to make a speech, who is constantly diverted from his objective by events beyond his control. In the depths of his frustration, he says to the pupil who’s driving him across the country: “Oh, no, I can cope with the despair. It’s the hope that kills you.” (Cleese wrote the line himself, apparently, in this Michael Frayn-scripted film.)
It was the hope that was so corrosive. But now we had the confirmation: he’s unable to hear us. His world is silent, without music, without birdsong. But also without people shouting, doors slamming, pans dropped on the floor. And he’s never known anything else. There won’t be any sudden change. He’s not going to wake up hearing. Something’s wrong in both of his cochlea, or perhaps the brain’s auditory centre; it’ll take much more detailed tests to determine that.
At this point we looked at him again, and realised how happy, and healthy he is. He’s always smiling. He’s very, very interested in what’s going on. If you come into his field of view, he latches on and watches, sucks it all up, drinks it all in. He’s a smart baby. And we love him.
So he’s deaf? Well, lots of people are, when you dig into the statistics. One in a thousand babies are born deaf. We’re not unhappy. That’s how he is. That’s his world; a silent one. We told our parents, who were respectively upset - because for them it’s all shock, sudden, immediate - but already our other kids are learning sign language. We are too; we picked up a booklet in the waiting room before we went into the hearing test.
The specialist found it hard to tell us. But I think that’s because he’s been doing it for years. And things have changed radically in the past few years. With the internet, any new parent can arm themself with the information they need to work out what sort of hearing loss their child might have - if they have. There are great resources out there too: the National Deaf Children’s Society, for a start, which has discussion boards where profoundly deaf people can post messages explaining how they’re just off to university. You can read up all about cochlear implants. You can download the PDFs of the NHS’s Early Support guides to dealing with deafness (PDF, 1.4MB). There is just stacks of stuff out there which, 15 years ago, we’d have been scrabbling to find.
People we’ve told have been shocked, and upset, and ask us if we’re OK. But it’s not like he got hit by a car. He’s never know a different world, and he likes the one he’s got. And we like it too.
There’s a temptation to wonder about causes. You also look at children in the park and think, just briefly, “Why are they OK but..?” But thinking like that is really corrosive; it would make you resent your own children. And then I compared myself to people who wanted children but couldn’t have them, and I preferred where I was.
There’s the religious temptation - that God did this or that so that you’d emerge a better person. Sorry, but no. If God was so involved, could he perhaps have consulted us first before he twiddled with Baby3’s cochlea in the womb?
There’s also the temptation to let your focus leak away into the past, or the future. What if that first test could have just had a better result… But no, that’s not going to happen, because it’s happened. (We’re so accustomed to looking for the cheat button, to rewinding to where it was all OK, in modern life.) Or the future: what if something amazing happens with stem cells… but no, that’s not going to help us for the next three years when he needs to learn language. Stay in the present; deal with what you have.
So why am I writing this? Is it to burden you, or unburden myself, or seek sympathy? No, none of those. I really just want to make a couple of points, and add another stopping-off point for any parent whose child is diagnosed deaf, and for anyone working on the Early Screening system.
1) The Early Screening programme works. And probably it would for anything that can be picked up early (even autism?). The earlier you know, the sooner you adjust.
2) Consultants need to talk to the parents before they do the second test. It’s that old doctor-patient-involvement thing.
3) We’re fine. Really. And so is he.
4) If you want to comment, I’d be really interested to hear about parallel experiences or resources.
My mother said, as she absorbed the shock, “Life is hard, isn’t it?”
“Yes,” I said, “but it’s a lot better than the alternative.”
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