Just over a year ago Addison received two cochlear implants. She is one of over 80 children in NZ who have two implants. She is one of a much smaller group (about 30) who got their new ears in one operation.
However for Addison’s parents the journey to getting her new ears in only one operation was simply unbelievable. Addison’s Dad, Rawiri, has recently blogged about this time. We would encourage you to read the whole blog post. Here are some exerts…
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.”
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.
The Blundell’s journey has been a roller coaster ride. The 2ears2hear team got involved with them when we heard about their situation. There were letters to the Minister, a social media campaign which flooded the Minister’s Facebook page and much working of contacts. We were elated when the Hutt Valley DHB came to the party and took away the need for Addison to go through a second surgery to get her second ear. Some small degree of common sense reared its head in this terrible situation.
What the Blundell’s went through was extreme. However every year around 16 families (there are 16 implants currently funded for children identified through the hearing screening programme) go through this to varying degrees. Every year around 16 new parents find that their children have no usable natural hearing and need cochlear implants. Every year 16 new parents get told that they need to find between $40,000-50,000 to give their child what every other parent takes for granted – that their child can hear with both ears. These are parents who will have already been making financial sacrifices to start a family. And then they get told effectively they needed to have $50,000 sitting in the bank – just in case.
Sadly around half of these families can’t scrap together this money in the 6 months they tend to have before their baby is big and strong enough for the operation. It’s just too big an ask. This is despite the massive step up in knowledge about cochlear implants and the need to have two of them that has occurred since 2ears2hear started. And this is despite the amazing support we see from communities across New Zealand.
The reality is that in this most formative time in a child’s life, these families need our support through the government funding bilateral cochlear implants.