The Bombshell

The last few weeks have past in a bit of a blur, and not for the best reasons unfortunately.  Of all my posts, and this is the 99th, the one you are now starting will be the hardest to write but here goes.  On boxing day Tom was booked in for his newborn hearing test but decided the warm weather and a bit of a cold meant being settled was not on the radar.  A couple of weeks later things were much better but he failed the initial screen.  Plenty of reasons that could happen and we were told that only 1 in 10 babies failing the screen had any kind of issue.  Hearing was not something we had noticed a problem with.  Still a trip to Christchurch, where more advanced testing could be conducted was needed to be sure.  Nothing to worry about unduly though in the back of our minds I think we were both aware that there was a chance everything would not be fine.  You can see where this is going...

On another baking summer day we drove the hour up the road to Christchurch hospital where we met the audiologist, Ruth, who scrubbed Tom's head with spirit and attached the electrodes to him.  Two on his forehead and one behind each ear.  An eardrum check was fine and it was then time for the earpieces to be put in, sounds played and the nerve response measured.  For this Thomas needed to be sleeping which he did after a 40 minute feed.  The hot room meant he was a little sweaty and there was some problem with keeping the electrodes on but the results were pretty clear, there was a hearing loss and it was up in the more serious categories.  Another test was scheduled for the following week to check this result and record his response to some different frequencies.  It was a bit strange to hear the news that Tom was deaf delivered in a kind of happy sing-song manner.  I guess it was her way of trying to make it appear like it was not that bad but regardless, the point was communicated and off we went back to Ashburton.

Although we had both considered the possibility of this result, hearing it was still a bit of a shock and then there are all the emotions to deal with.  I guess the most visited one is sadness with a healthy dose of denial thrown in for good measure.  There are also the questions, many, many questions.  What does it mean?  What will he need?  Will he be able to hear at all?  Hearing aid or cochlea implant?  Will he be able to talk?  Of course there was always Doctor Google to answer some but as we are both aware it is not always a reliable source of information and anecdotes are all well and good but when n=1, the number of conclusions you can drawer from peoples own experiences are few.

Starting to tell people was also a bit tricky.  We did not want to make a mass announcement and so it has been a case of telling people when they have been by themselves, especially an issue at work and I'm not sure if everyone knows yet or not.  The grapevine appears to be working particularly slowly!  Of course before that there were the phone calls and messages home that first night.  Amy and I are both generally pretty optimistic and try to make the best out of a situation and even at this early stage, in a message to my brother I wrote:

"Still, we are trying to be positive as there is plenty worse that could happen and in being caught early we are best placed to do whatever needs doing to help him.  After all he is still our happy little chap"

And that he is.  He has not known any different, and never will so what's the point of crying over spilt milk (I seem to be getting plenty of cliched metaphors in here!). Something else I read was along the lines that he had not changed, it was just our knowledge of him and his needs had changed.

Our second test was carried out and Tom again behaved perfectly with the audiologist able to carry out all of the testing she wanted.  And the facts? Tom has a "severe" category hearing loss, one off the worst which is "profound".  His cut off is 70-80 decibels depending on frequency, meaning that anything (which is most things) quieter than this he will be unable to hear at all.  When speaking loudly next to his ear he may be able to hear some sounds but this will mostly consist of vowels (try going "ssssssssss" or "thththththth" loudly and you will realise you can't!) and so it will not sound anything like what you or I may hear.  Hearing aids should help significantly although there is the potential that things will deteriorate and an implant may be needed.  He should have these hopefully within the next 6-8 weeks.  The cause is most often "one of those things" with the other potentials being genetic or part of a syndrome (so there may be more news yet...) for which he will be tested at appointments with ENT + paediatric doctors.  The support and services for deaf babies and children in NZ is (so far) fantastic and a day after our second visit we had a visit at home from the health and education support liaison person, I can't remember her proper title.  She was very nice and helpful and has left us a huge wad of reading material which we are slowly trying to digest.

The best thing she had to say was that with all this early intervention and continued assistance, the aim and expectation at this stage is that by the time Thomas is 5 years old he will have caught up and be just like any other 5 year old boy.  We will have to work much harder with his listening, speaking and reading and if we don't get there then it will not be for a want of trying.   He is, and will always be, our happy little chap who we love dearly and would not be without.

I'll leave the last word to Tom himself:

Keep Calm and Carry On!