On talking to MPs, head shadows and squelch

With the sudden nature of Tom's implantation - barely 40 hours between being told and the scalpel coming down - we had precious little time to take in and deal with the critical information that despite the implant team requesting simultaneous bilateral implantation (devices inserted into both cochlea during the same operation) our PCT, who are responsible for funding the procedure, only stumped up the cash for one.

Polite enquiry and emailing has revealed that unilateral implantation is policy, one shared with a conglomeration of PCTs who 'share the risk' of members of their collective populations being in need of cochlear implants. The discussion was short and polite; the dismissal clearly intended, on their part, to be the end of the matter. We don't share that view.

The history bit...

Cochlear implants have not been around particularly long (the FDA approved the first device in 1984 and lowered the approved age for implantation to two in 1990) and the UK can't be said to have been at the forefront of their development although Nottingham started the first dedicated paediatric program around that time, albeit with very strict criteria. Indeed, if you look at some policies that are still floating around on the web such as this little beauty you will see that some areas regard the restoration of a sense vital for communication with the majority of the population as on a par with alternative therapies and extraction of wisdom teeth and only slightly more worthy of funding than penile implants and hair removal. Luckily, our commissioning region had the foresight to accept the clinical evidence and fund the implants as long ago as 2003.

So just as the UK is catching up, those clever folks in the USA and Germany amongst others start moving the goalposts and exploring bilateral implantation. Double the initial cost, for sure but the question that hangs over it is whether its double the effectiveness. What does the restoration of binaural hearing (hearing with both ears) give you that only restoring some hearing in one ear does not?

The science bit...

It seems obvious to most people that you can hear better with two ears than you can with one. Putting the scientific gloss on this, it gives you:

• Better localisation. Sound will reach your ears at slightly different points in time unless its source is directly in front or behind you. This difference allows the brain to work out much more easily where the sound came from.
• Improved hearing for speech in noise. The reasons for this are complex and well explained in this rationale for bilateral implantation and include the impact of the head shadow (if the source of the sound is close to you on your non-hearing side your hearing side is in an acoustic 'shadow') and the squelch effect - your brain's ability to pick out speech when the sound received in each ear has a different signal-to-noise ratio.
• Safety.
• Redundancy. The implant is an artificial device - a very well designed, reliable one but still susceptible to failure. With only one, failure casts the user back into their silent world for however long it takes to repair.

Straightforward you would think? Alas, no. These are expensive pieces of kit and implantation leads to a life-time support commitment in addition to the initial outlay. It is at this point where our marvellous 'free at the point of delivery' National Health Service starts to creak a little. This is a service that saved my son's life and arranged the first implantation in 'speeding bullet' time so I am not about to launch into any sort of condemnation. But...

The body of research material is growing - unfortunately, for every article that supports our case such as this American study by Dr. Ruth Litovsky or this recent study , there is something like this cost-utility scenario analysis which funding bodies leap on with obvious relish. The cost-effectiveness of the procedure is what counts and, although there is more than one way to do the calculation, the funders can still cherrypick research that suits their budgetary constraints.

The issue that keeps me awake though, as I described in Pictures of Cochlea, is that post-meningitic children have cochlea that are prone to ossification and we don't have time to wait. As the British Cochlear Implant Group note and the National Deaf Children's Society reiterate:

... that there may be clinical reasons when professionals would consider bilaterally fitting a child. In particular, this could be following meningitis where there might be particular issues relating to ossification. This could mean that to not bilaterally fit a child, should the need arise to reimplant, for whatever reason (device failure,
breakdown of the original implant site, displacement following trauma, etc) then
the rapid ossification might mean that to reimplant in the other ear would not
be feasible.

This is the sort of thing that leads to sitting in front of your MP at his constituency surgery and doing your best to cut through the scientific blurb to the soundbite that would stick in their minds. I came away thinking we'd managed it so lets see....

Post-op blues

The post-surgery garb of choice at Nottingham:

1. Natty neo- prene head band for wound protection and souvenir of the day
2. Button-up shirt (easy to forget in these situations)
3. One sock to prevent determined toddler extracting their own canular.
   

The luckiest of the unlucky

Last Saturday Nik went to a 'pre-implant' open day at Nottingham's Ear Foundation where she had the opportunity to meet parents and implanted children along with those in the same 'holding' position. This Saturday Tom was Implant Day + 2 after what can be described as, in a somewhat stereotypically understated English way, a 'bit of a week'.

I received a phone call early Tuesday afternoon from the Cochlear Implant program asking if we were happy for Tom to be the reserve for Thursday's surgery date. The fact that Tom had yet to complete all his tests (an ERA was scheduled for Wednesday) and the surgeon had yet to see the MRI results seemed only to be of concern to me and a promise to phone back later was made.

So, late on Tuesday afternoon, the news arrived in a rush: forget the 'reserve' position, Tom was in prime slot for Thursday (what happened to the other case...?). Forget the ERA (how valuable are these tests then?), we'll hand Mr. G. the MRI images in the morning when you pop in to choose the device, ear and any last minute questions. Oh, OK then.

We manage to keep our heads screwed on through Wednesday's information overload (actually, our capacity for assimilating this stuff is pretty well honed now), Tom gets admitted on to the ward in preparation for Mr. G's punctual morning start and we slope off home to have the obligatory bottle of anaesthetic red. This is one of the advantages of living so close to the hospital; admittance is a formality with Tom allowed to go home rather than burden the nurses.

After spending 22 days in hospital following Tom's meningitis (a stay that included a coma, grave warnings about prognosis and more anguish than I care to dwell on) three hours of surgery is a walk in the park. Well, maybe not that easy - there is no fun to be had being an anaesthetist's accomplice - but within a few hours Tom was being thoroughly entertained by his grandfather and was getting distinctly fed up about the lack of biscuits coming his way.

Now it's Implant Day + 3 and Tom is as cheerful as we've ever seen him. The wound from the implant is almost laughably insignificant (my father did more damage to himself during a contretemps with his garage door), we have had to administer no analgesia and are having to convince people that this is the boy who has experienced two months of sheer awfulness.

My thanks go out to the staff at the Queen's Medical Centre, Nottingham who have held us together. And to Nottingham's Cochlear Implant Centre who have, in little over a month, got us from initial referral to fully paid up members of the Cochlear Implant Family. Now I know what I pay my taxes for.

On the eve of implantation

At 8.30am tomorrow, providing he doesn't pick up some virus in the meantime, Tom will be wheeled into Mr Gibbin's operating theatre and have his cochlear implant fitted. The process should take Mr. G (as I'm sure he is never referred to as) around three hours and he should know, he's done around 300.

If you're interested in what Tom is going to undergo tomorrow, Charles Arthur (a thoroughly nice man in my opinion, based on his blog and a couple of pleasant emails) has written a fine description. As with Charles' baby3, Tom is having the Advanced Bionics device fitted. Its robustness and adaptability suit a busy toddler and the direction their research is going is promising. Of course, we weren't swayed by the promise of a stuffed monkey toy as Tom's post-surgical comforter.

So tomorrow is the big day, he should return home on Friday and, in around four weeks time, the external device is fitted. Then starts the next period of rehabilitation.

So here's a picture of the little guy from the weekend, looking pretty perky considering he has just come through a life-threatening disease.

Passing tests without looking

This morning we met with Nottingham's paediatric cochlear implant team for what I thought was a cosy little chat or, at least, an opportunity to bombard them with questions raised by endless researching and badgering. While there was a certain amount of that it seemed that there was a certain amount of assessing candidacy and potential going on with Tom being engaged in subtle 'structured play' assessments with a couple of very pleasant and astute speech therapists.

As is obviously the case with paediatric assessment, Nik and I were being assessed too. With the need to engage in a great deal of post-operative rehabilitation, the way we communicate with Tom was closely examined. It seems we fit the bill in these respects and another piece of the jigsaw slots in.

Seeing as the little guy was being unusually cheerful around medical professionals (we have come a long way - although they weren't carrying needles or wearing stripes), Tom had his hearing tested too; both with his shiny new aids and without. Other than a consistent response to low fequency, vibro-tactile sounds, Tom was blissfully unaware of any sound which left me with a bizarre feeling of having passed by having failed. Tom's hearing loss is profound - if it was only moderate we wouldn't be heading for the implant and would be 'left' with 'old-fashioned' hearing aids. How perspectives get skewed.

As it stands, Tom has one more test to do - the sinister-sounding 'Evoked Potentials' team will sedate him next Wednesday (14th) and measure brain stem activity to get an objective measure of the hearing loss (because, of course, Tom could just be playing an elaborate joke and pretending not to hear the sonic blasts they keep throwing his way. Toddlers are like that). We then see the very important Mr Gibbin on the 21st for results and decisions. As he's post-meningitic, Tom could be implanted before the month is out.

So, we wait and search round for proactive things to do. Tom has learnt his first few signs, mostly involving modes of transport (no gender imprinting there then), and Nik and I are even signing to each other when he's not around. We want Tom to have bilateral implants, the funding for which is down to our local PCT. Decisions on such things are a little unpredictable apparently so we're going to do a spot of lobbying ourselves.

Things look bright...just so long as Tom's cochlea haven't gone ossification crazy.

Chocolate and other incentives..

So the hearing aids are finally on and it all came down to chocolate. Two weeks of namby-pamby parenting where we've wandered round the house in them, personalised them with funky elephant stickers (Phonak, I don't know how much user research you did but elephant branding for hearing aids? I remain unconvinced), left them lying around so the boy could 'get used to them' and put them on the rocking horse all to no effect. Withhold chocolate until he complies however.... it's a winner every time.

And I know how much pain we're storing up for ourselves, thank you.

Tom quickly forgot about them as it turned out - the moulds are well fitting so they don't appear to trouble him. He still doesn't appear to be able to hear anything though so the process is really a dress rehearsal for the exterior equipment that would come with an implant.

Pictures of Cochlea

May 31st was another important diary date for Tom - back to QMC for an MRI scan on his cochlea. One of the known after effects of meningitis is the ossification of the cochlea - the fluid that normally moves with the sound waves received by the ear begins to fill with bony growths. This hinders the implant process and reduces their effectiveness which is why Tom has been 'fast-tracked' on the Cochlear Implant program and why he has a diary all to himself, chock full of appointments.

So what does having an MRI done entail? Various acts that contravene the Geneva Convention, according to Tom at least. No food for six hours beforehand is the closest thing to torture for someone who has developed a serious biscuit habit since he fell ill. To be fair, Tom didn't start saying 'chock-lit' over and over until he'd gone at least three hours since breakfast. Couple this with sleep deprivation (well, foregoing the lunchtime nap) and, by 1pm, things were only just staying the right side of fraught.

Being a wriggly toddler who hates offering up his veins for canulars, Tom was put under anaesthetic using gas - it was mercifully quick and luckily he didn't look into my treacherous eyes as I held him still for the anaesthetist. The scans themselves take very little time and, after hanging around to make sure he eats and drinks (not a problem; Tom is now a devotee of hospital toast), we were home.

So, how can I be so light about things now after all that has passed? Standard defence mechanism of many people, I suspect. There is less to be scared of now and there is a feeling of control returning; we can do a lot to aid Tom's recovery; assisting and encouraging his movement so he regains his independence, encouraging him to mix again so his confidence is restored and starting signing to assist with communication.

Tom is so much more cheerful and we can't help but laugh along with him. We've been seeing a lot of grandparents and that has done a great deal to assist the recovery process; the Mutual Admiration Society has reconvened - parents take a back seat!