Category Archives: Cochlear Implant

It had to happen sooner or later…

January 14, 2013 By in Cochlear Implant Leave a comment

As Alice’s Mummy has pointed out: “at least it happened on your watch”.

Alice, amongst many other things, is an avid rugby fan. By that, I mean she has been dragged to rugby grounds around the country to watch Rugby at her father’s whim and enjoys the sweets enough to make it worth her while. She has been known to shout “har-le-quins” on occassion too. We have been visiting the Twickenham Stoop to watch Quins for over a decade and Alice, since she was just six weeks old. Our friends who sit around us have grown up with Alice’s Ears and all know about the journey she has been on. It is a wonderful, family club.

On Saturday we trecked out along the usual beaten path, from the Sussex Pub to the Stoop. Alice happy and skipping along the way on a cold, dank, Saturday afternoon. She took a minor tumble en-route, but nothing that wasn’t solved by a brush down and a big hug. Or so we thought.
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Alice has always been fantastic at reporting issues with her CIs. When they are on, when they are off, when there are technical problems and, more recently, when there is a problem with a map. It makes our lives so much easier and is testament to how well she gets on with them.

Half way through the first-half of the game on Saturday, Alice reached under her hat and turned to me saying “Daddy, my ear’s fallen off”. Not to worry I thought, it will be hanging in your clothes somewhere and we will find it straight away. Only we didn’t…

It was not in her clothes (despite the strip-searches in near-Zero temperatures) it was not on the floor, it was not in a pocket it was nowhere to be seen. Panic ensued. We retraced our steps over the 1km back to the car – nothing. We were sitting in a rugby ground with 13,000 merry rugby supporters who wouldn’t even know what a speech-processor was if they found it. Help.

And yet again we are reminded of the fragility of Alice’s hearing. We were surprised that she hadn’t reported it missing sooner as she relies on both her ears to hear as well as she does. I guess the fall must have confused her more than we thought.

I can only thank the kind gentleman who found it on the path leading to the ground. The Steward who handed it to the club and the club for phoning me within half-an-hour of the game finishing to reunite us with Alice’s ear. Harlequins FC should be rightly proud of how the helped us.

But here is the thing, it is easy to get complacent when your child is doing so well. To forget that Alice’s world is dependent on microchips and batteries. If they break, or disappear (who hasn’t broken or lost a phone for example?) Alice’s world and ours turns upside down. It is a technology Alice and we have come to rely on but it is one that we cannot take for granted – not even for a moment.

I can’t wait until Oliver has his fitted and we have four processors to look after. Dear God.

 

What Can My Baby Hear?

January 7, 2013 By in ANSD, Auditory Neuropathy, auditory neuropathy spectrum disorder, Cochlear Implant, hearing loss 4 Comments

It should be such a simple question, but actually, for our ANSD babies, it’s the hardest to answer.

In standard hearing loss, you do an ABR or test them in a hearing booth. For our babies this just doesn’t cut it. Alice tested anywhere between a moderate and a profound loss within the same session and within minutes. Her hearing was consistent in that it was completely inconsistent. Even when we went for Ear No2, she was still able to completely confound us and her audiologists. Interestingly, when we ask what she hears, its anything between nothing and her new favourite, “Ghosties……..” So none the wiser. But none of that hearing was useful. She couldn’t make enough sense of it to make out speech.

But ANSD kiddies are all different; some hear nothing useful, some have windows of useful hearing and some hear well with amplification or technology that improves noise to sound ratios. Herein lies madness and it’s frustrating for parents, who want a straight answer to what should be a simple question and for professionals as they can’t give the straightforward answer.

We don’t think Ollie hears much; in the next month or so we’re going to find out where he tests in terms of VRA but last week was more exciting and much more useful.

Francesca from Manchester University has devised a test to try and capture the useful hearing in an ANSD baby. An amazing area of research and one that we are delighted to support. We have discovered that Oliver can hear, he can distinguish the different parts of speech (on a simple level consonants and vowels) and the signal can get through. The issue is that it took very loud sounds to do it – for Oliver, it was 105db, but it was still possible. For other ANSD children, the answers will be very different. It was fantastic and amazing and it will be an extremely useful piece of the puzzle for audiologists.