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The difficult task of explaining extreme rage

On 8 November 2012 the NSU was notified of a 10 month old re-screened baby diagnosed with a hearing loss that should have been detected at screening. The baby was identified as one for whom the screener had screened both of her own ears. The hearing loss is bilateral and classified as a severe to profound sensorineural loss. Clinical advice regarding the delayed diagnosis is that the age of the child at diagnosis is still early and any impact on the social, language and other
development of the child would be small. The baby is to have a cochlear implant at 12 months old.

Mmmhmm.

The baby was identified as one for whom the screener had screened both of her own ears.

OK.  Right.

The baby was identified as one for whom the screener had screened both of her own ears.

My eyes danced over the words one last time as my brain seemed to be taking its time in absorbing them and extrapolating their meaning.  I had been given a copy of the delightfully named “Quality improvement review of a screening event in the Universal Newborn Hearing Screening and Early Intervention Programme” document from the NZ Ministry of Health, dated December 2012. I had it a day in advance of its public release, so I was reading it, and had managed to get to page 18 (or, page 19 in the above linked version).

And suddenly… I felt… odd.  You see, I knew for a fact that “The baby” was my daughter, Addison.

What is the angriest you’ve ever been?  Stop and have a think about that for a moment.  I mean, sure, we may get disgruntled at people who leave their trolleys in the middle of the fruit and veg section of the supermarket, or the morons who sit out in the overtaking lane on the motorway or expressway, cruising along and holding up traffic. But I don’t mean that casual misanthropy that many people experience every day as they sweat the small stuff.

If I was to list an escalating scale of rage, it would go roughly something like this:

  • Uncomfortable
  • Disgruntled
  • Cross
  • Mad
  • Angry
  • Pissed off
  • Furious
  • Road Rage
  • Red Hot Rage
  • White Hot Rage
  • Blackout Rage
  • “Going Postal”
  • Grabbing a rifle and finding a belltower
  • Where I was on 30 Jan 2013

That it’s taken me this long to write about it should also be telling.  But allow me to backtrack, to flesh out the story.

Late December, 2011.  My partner, Kerrie, and I, were expectant parents and had gone through the usual nesting activities.  The last trimester had been tough for all parties, as Kerrie had had some health issues, but we had great support from our families and friends, and due to Kerrie’s issues, we were able to select a date and time to deliver via elective c-section.  So there’s that silver lining, I suppose.

Anyway, immediately after your baby arrives, you have a sub-conscious “mental check-list”, or at least I did.  It goes something like this:  Umbilical cord cut?  Check.  Looks like me and not the milkman?  Check.  Birthing suite doctors are happy?  Check.  All fingers and toes present?  Check.  And so on.

As I didn’t have enough leave built up for any sort of paternity leave, I was at work a day or two later when the newborn hearing screener arrived in Kerrie’s hospital room, blurted a series of words at a million miles a second, woke Addison up, punched a few buttons on the machine that she’d brought into the room, said that everything was ok and then left.  Kerrie didn’t think much of it, soothed Addison back to sleep and tried to get some sleep herself.  She later told me what had happened, to which I simply assumed that the job was done right by someone in a rush, and added another check to my mental check-list.

Hearing test passed?  Check.

A couple of days later we took Addison home and went about our lives, struggling through the usual adjustment period; To the shock of sleep deprivation, feeding, changing nappies etc.  I had created a white noise CD using some freely available tracks and purchased a small stereo for Addison’s room.  We figured it was working, because she was sleeping quite well.  It might have helped us too, hissing away through the baby monitor, but you really don’t sleep normally in those first three months.

When Addison was about 9 months old, we received a letter from the Hutt Valley DHB, stating that they’d found a flaw in their testing method and that they were encouraging parents to bring their children in to be retested.  We initially dismissed it, thinking that Addison was hearing perfectly fine.  She would turn to face us when we entered a room, and seemed to be reacting to our baby babble, so as far as we could tell, she was a fully hearing baby.  But I later sat behind Addison and clapped my hands loudly.  I got no reaction.  My heart sunk, but just a little.  I’m a realist – it could simply be glue ear, I reasoned.

But suddenly there was a big, red question mark on my mental check-list.  And that didn’t sit right with me.  Plus what would we have to lose by taking her back to be re-screened?  At least half an hour of our time?

Two tests with the Audiologists at the Hutt Hospital later, and we had our diagnosis.  Almost immediately, we were introduced to our Advocate of Deaf Children (AoDC) – someone from the Ministry of Education who helps and guides parents of deaf children.  We were given a stack of information brochures, and a couple of DVD’s.  Moulds were taken of Addison’s ears, and she was fitted with high power Hearing Aids (HA’s).  We were told that they would not give her access to language, but it was important to do whatever was possible to keep the auditory nerves working.  Until, at least, we were able to recover from the shock, and make an informed choice forward.

Our daughter is profoundly deaf.  She could be sitting on a runway and she might be able to hear a nearby jet’s engines.  Might.  Turns out the human brain is very good at compensating – Addison had been turning to face us due, probably, to seeing a shadow move, or feeling vibrations in the floor.  Or even sensing pressure changes in the air.

Then we were told that New Zealand only funds one Cochlear Implant (CI).  If we wanted a second one for her, we’d need to raise NZ$50,000.  Neither our Audiologist or our AoDC had informed us of this with any malice whatsoever, hell we had probably asked a question prompting that answer, but it still felt like being kicked when I was down.

And I was dumbfounded, too.  I mean, depending on your beliefs, we were either created with or evolved two ears for a reason, right?  Surely two CI’s made sense, then?  How is it, that New Zealand, a first world country, was denying access to what any reasonable person would assume (and which I’ve since confirmed) would be medical best practice and care?  Especially for its most vulnerable citizens?  Yes, New Zealand isn’t perfect, but I’d never, ever, thought that I could be ashamed to be a New Zealander.  Until that moment, and every time I dwell on it now.

Many parents in this position grieve.  I know one who cried for a week when she found out that her child was profoundly deaf.  On a pre-op visit to our surgeon, there were a bunch of med-students who happily played with Addison, and our surgeon asked us “Have you grieved yet?”  Which took me aback at first.  But individuals react to shock in different ways, and there is no one true, correct way to react.  And no one way is superior to another – whatever your natural response is, is very likely the right one for you.  Kerrie didn’t take it well, at all.  I, on the other hand, initially felt very numb, but quickly shifted to an attitude of “right, let’s get on with it.”  I’ll admit that I’ve had tearful calls home to Mum about silly things like heartbreak, but not that phone call.

What happened next is a bit of a blur, but the media were there to document some of it.  I started a givealittle fundraising page, a few parents and advocates who had been through this before got in touch with me and offered their support and advice, and we were published in the DominionPost on 21/12/2012.  And on 01/02/2013, a day or two after I had read the report, we were published again.  It fudged my quotes slightly, but the gist of it was simmering away underneath.

Mr Blundell said the report had left him angry and struggling to understand why anyone would fake results for a newborn baby.

While the Hutt Valley District Health Board had been great in helping Addison, he felt it should have told him her test was faked. “It is frustrating that they weren’t 100 per cent upfront.”

You read that right.  The moment I found out that Addison’s hearing screener had tested her own ears instead of Addison’s was when the words “The baby was identified as one for whom the screener had screened both of her own ears” finally registered in my brain maybe half a second after I’d first read it.  There were, of course, other things to get mad about in the report.  Like the fact that several other screeners around the country had done the same thing.  Or that the same had happened in the UK a few years earlier, and recommendations from that incident had not been adopted by NZ.  The report also noted that some of the screeners were disgruntled: they felt that they were over-worked, under-appreciated, under-paid and not given due respect from midwives.  Without being too dismissive: suck it up and join the club.  Most working people have those feelings, but not all of them get a $50k per year part time job after a two week course.  Yes, it was only 8 out of approximately 108 screeners who had stuffed up, and obviously most of the screeners were working hard, doing their job right and finding it to be rewarding work.  But that’s still a high percentage of unprofessional bad apples, especially for such a role.

So there was a lot for me to be mad about, but only one thing to take me over the edge.  And, like that, I’ve segued back to the topic of my rage.  Words like livid, furious, and ropeable simply can’t express just how angry I was.

So what was the experience like?  Somewhat ironically, everything went silent.  Except for the thumping of my pulse, which seemed to get louder and faster.  I shook violently for a couple of seconds as I shifted gears through the stages, but somehow I redlined, skipping the levels that would have had me lash out and/or go on a homicidal rampage.  Or at the very least, trash my office.  Soon, my breath got shallower, I felt light-headed, and my computer monitor seemed to oscillate in colours through what little tunnel-vision I had developed.  The pulse that had been pounding away in my head like a furious steam engine from hell had crescendoed and was calming.

And then I found myself sitting there, sipping on my cup of tea.  The world could have been melting down around me in nuclear Armageddon, and I’d have been content with that, in the moments before I was disintegrated with a psychotic smirk on my face.  I wanted the world to burn.  It was by far the scariest sensation I’ve ever had, and trust me, I don’t want to do it again.

I don’t remember how long I sat that like that, or the come-down, not even vaguely.  But writing this out tonight, it seems like there’s a sort of bell curve of coherence in the rage scale.  Possibly there’s room for an option beyond what I experienced, perhaps it’s vengeance, considering that the reaction gets more conscious and calculated in the later stages.

Epilogue, of sorts:

The day that the above article was published, our Audiologist read it and immediately called me.  She explained that the reason we weren’t told was because at the time of Addison’s diagnosis, all of the thousands of test results that had been performed nationwide were still being poured over with a fine tooth comb, and that there had been an extremely small space between completion of that review and the release of the report.  She reiterated what the report said: that the screeners at fault who had been interviewed had all claimed that they’d done nothing wrong.  She then explained that without an admission from the screener at fault, that they couldn’t say with 100% certainty, either, that the screeners had tested their own ears.  What they could tell, though, as highly experienced and educated Audiologists, was that the results submitted for a lot of children certainly were not the ears of children.  They were the ears of adults.  And the liklihood of the screeners submitting another adult’s ears was realistically slim, which leaves a 99.999% probability that the screeners were testing and submitting their own ears.  Also, in some cases, it was standard practice for a screener to test their own ears each time they started their test machine, in order to compare to a known test result.  Because of this, it was easy to match that known test result to the results submitted for some children.  I’d calmed down by the time she called me, so I absolutely appreciated her call and explanation.

We were also published on 19/03/2013, 21/03/2013, and 23/04/2013.  Long story short, HVDHB underwrote the cost of the second implant.  With help from my medical insurance, and generous donations from local Hutt Valley Rotary clubs, the Stokes Valley Freemason’s Lodge, the Croft Funeral Home, and not to mention dozens of anonymous (and some not-so anonymous) donations via givealittle, we were able to get Addison’s second implant at the same time, and pay it off in full.  Addison has just gone one year since her switch on, so she is one year old in hearing age.  Her language development is coming along nicely, both auditory and sign.  We have good expectations of her continued development, will continue to pay forward the help that we got, and we will continue to advocate for funding for bilateral CI’s.

We haven’t received an apology from the Ministry of Health or the Minister of Health, by the way.

Categories: Journal Write Ups

rawiri