“Following my happiness that Elliott had recovered from meningitis and was back home, I have never forgotten how deeply sad I felt when I realised, he was now deaf.”
Dreams have sound, thoughts are tangible, and silence is noisy. Properly noisy, when I am lying in bed at night looking into the darkness and there is a sudden flash, crash, or movement, I can hear it, but not the sound, but rather my brain and inner workings’ reaction to it. Similarly, and don’t think I am crazy for this, I can feel the sound at night… I have tried so many times to describe and explain the sounds and feelings that silence comprises but every time I fail. It is incomprehensible to any typical hearing person, but to me, it is normal.
I forget that I’m deaf for all but 5 minutes in the day, 2 minutes in the morning putting on my processors as I enter the normal world. Again, probably a total of 1 minute in the day where a magnet falls off and I momentarily plunge into a separate world. Finally, for another 2 minutes at night when I unplug and re-enter the world of brain noises! My world is normal on so many fronts, but on others, I am so far outside the realms of normality. This is my deafness tale…
I have bilateral profound hearing loss and access sound through Cochlear Implants following a bout of meningococcal meningitis as a baby. If you asked my family and friends to describe me, they’d probably say I am a sarcastic pain in the backside. Under the satirical and ‘idgaf’ façade I am an emotive guy, my parents are my best friends, and a perfect Sunday comprises of a Formula 1 Grand Prix, lunch with my grandparents and a “table dinner” with Mum, Dad and Sister.
Meningococcal disease refers to any illness caused by bacteria called Neisseria meningitidis. These illnesses are often severe, can be deadly, and include infections of the lining of the brain and spinal cord (meningitis) and bloodstream. At 8 months of age, I contracted meningococcal meningitis and lost my hearing as a result. Hearing loss is one of the far lesser potential outcomes of this disease, it could have very easily swung to a scenario where my parents were burying their first-born child. But it didn’t.
In late 2003, not even 1 year old, my mum and dad’s parental instincts were kicked into overdrive as I became particularly unwell, prompting hospital visits for check-ups, tests, and repeated attempted diagnoses. After 2 prior hospital visits, in which doctors noted Meningitis as only a secondary consideration, it was a case of 3rd time lucky (or not so lucky depending on your view) for baby me – following lumbar punctures and blood tests a definitive diagnosis was given to my fear-stricken parents, Meningococcal Meningitis B.
“It’s always scary when a child is poorly, and Elliott was unwell enough to take him to the hospital twice before he was diagnosed with Meningitis. The doctors only considered it a secondary thought and did a lumbar puncture very late on before diagnosing why he was unwell.” – Dad.
Following the diagnosis, between the 3rd and 10th of December 2003, I was an inpatient in Ward 17 of York District Hospital. With my mum by my side, recovery from the initial treatments was swift and promising. Returning home with what seemed to be a 1,000-page leaflet on Meningitis, my parents were warned that deafness is something that can be caused by this cruel disease. However… how was anyone supposed to know if baby Elliott could hear them, was ignoring everyone or was distracted by a passing butterfly?
“It was very hard to spot [deafness] in an 8-month-old baby, who cannot communicate. We played and interacted with Elliott as normal, although happy, it was clear he was not hearing everything.” – Dad.
“After leaving the hospital Elliott was sat on my kitchen floor when I accidentally dropped a stack of pans! He didn’t even flinch, it was at that stage that I could tell he had no hearing!” – Grandma Lynne.
“Although he was very young, I loved taking him (my 1st grandchild) for a walk in his pram, talking to him about everything we passed, especially drawing his attention to trees, clouds, and birds. On his first walk with me after his illness I realised he was not responding in his usual way. He did not hear me and only reacted to detailed gestures. It was soon confirmed that he had profound hearing loss.” – Grandma Jean.
Reading through my mum’s detailed log of events, appointments, and treatments the following months were littered with hearing assessments, sedation tests, hearing aid moulding and audiologist examinations. Following an apparent lack of progress with conventional hearing aids, a referral to Bradford Cochlear Implant Centre (CIC) was made. The technology of Cochlear Implants was fairly unknown back in ’04 and such plentiful consultations were needed. The constant back and forth between the York Children Development Clinic and CIC surely had my parents knackered and sick of the M62.
During this time, I was diagnosed with bilateral profound deafness.
“Hearing aids were tried but even so, Elliott wouldn’t flinch to sounds beneath the level of a jet engine – as eventually determined by audiologists. Thankfully the NHS diagnosed the profound deafness as quickly as possible and proposed Cochlear Implants. There were no guarantees.” – Dad.
The general premise of a Cochlear Implant follows a small incision into the skull, behind the ear, removing tissue and skin. The implant, which looks like a sort of fat sperm (4 & 5 in the below image), is inserted into the patient’s head, and the all-important electrode array is inserted into the inner ear. Thankfully this is operated under general anaesthetic – even at 20 I would not want to be at all semi-conscious during this!
When faced with the prospect of me receiving Cochlear Implants, my parents – thankfully – took the opportunity. As with many operations, there are no guarantees of overwhelming success, but it bettered my chances of leading the lifestyle that my family wished for me, I may have never walked or talked otherwise.
“A personal memory on his journey was taking him to the Yorkshire Show and arranging for Elliott to sit in an F1 car, no one else was allowed! His operation was the day after.” – Grandad ‘Faffer’ Tony.
This operation was on the right side of my head. My mum took me, her baby, into the operating theatre, and said goodbye to me as the anaesthetic took my consciousness.
“As a parent, it’s not an easy decision to make to have a surgeon cut into your baby’s head, but Elliott would have never learnt to talk without the operation, nor lead the life we envisaged for him… so we went ahead. The operation went well.” – Mum & Dad.
“After the operation and eventually switching him on to hear his first aided sounds, he was so tiny wearing what seemed like an enormous backpack with the processing unit in it. Whenever Faffer, and I would look after him he came with a book of instructions in case of a breakdown! There was one breakdown that has stuck with me, we panicked but fortunately, we could CTRL ALT DELETE and resolve it without a trip to Bradford CIC!” – Grandma Lynne.
From here, on the 14th of July 2004, my mum kept a detailed log of the first 95 days after my implant operation. I won’t bore you with every day, but here are some highlights:
Day 1: Elliott had a good response to a hearing test and wore his processors throughout the day.
Day 2: Tuned again but Elliott was less patient than yesterday, he had a small tantrum at dinner about his harness.
Day 3/4: Elliott was very happy to be switched on in the morning! He is adjusting to pointing out all noises!! The speech therapist was very impressed with Elliott’s progress. But he has started taking off his processor during car journeys…
Day 10: Elliott was again happy to be switched on at breakfast and played brilliantly all day. During the car journey, Elliott again took off his earpiece and took it apart. We are now onto spare parts! Elliott raised his hand when he had no hearing and liked pointing to the window when trains went past.
Day 17: It was very hard to entertain Elliott for long periods today – he is teething again – but was able to wear the processor throughout the day. Elliott lets us know that he can’t hear when his magnet falls off by whining and raising his hand to his head (perhaps in search of a magnet?). Elliott had good interaction with other babies today – his cousins.
Day 19: Elliott has been quite naughty with his earpiece today! Using it to get and keep attention. He shouts at us, then takes it off and runs away giggling! I’m not upset about it – it’s just a new game!
Day 26: Elliott danced in the car to the music playing. He looked quite shocked as an ambulance raced by, he turned sharply to see what it was. When I call his name Elliott now turns to look at the speaker! Elliott’s cousin played with his toys – he did NOT like that! He shouted and screamed at him!
Day 30: Back to playgroup today – playgroup is very noisy, so I expected the worst! But he has been a little angel in comparison. Interaction with me and also during 1 to 1 is constant, it is as if we are having a proper conversation!
Day 41: Grandma Lynne looked after Elliott today, he is making a variety of noises with different pitches. He enjoys talking a walk in the pushchair to see everything and all the people. He points at objects and “ooos” at them! Grandma thinks Elliott is trying to say ‘Mummy’ when he says “mw-mw”, he is also saying “du-du”.
Day 55: I am fairly sure Elliott said “Mum Mum” while chatting to me! He is using his voice when playing with cars “br-br-br” and “b-ba-bu”. I think he also tried to say ‘Grandma’.
Days 70-80: Language has developed, and Elliott has been saying “Mum Mum”, “Ga-Muh”, “D-d, “NOOO” and “hi-yaaa”. Elliott’s walking has massively improved, and his balance seems to have returned to pre-operation levels. Elliott’s speech therapists are very impressed with his progress. Elliott was looking for his older cousin when at his uncle’s house.
Day 82: Elliott’s facial expressions in response to sound are very funny and cheeky. From raising eyebrows in response to instruction and shifting gaze from my face to his dinner plate – as if to say, ‘I’ve finished’.
Day 83: Elliott has been playing with Daddy and Grandad Tony today, this prompted him to say “Dad-dy” for the first time and “G-duh”.