Baby steps to a future now full of the wonders of sound
For Edward’s parents, Belinda and Andrew, life felt like chaos as they brought their newborn – and first – child home. For baby Edward, it was completely silent. After the devastating shock of Edward’s hearing-loss diagnosis, life had become what felt like a barrage of appointments, with repeat tests at Australian Hearing, fortnightly fittings for new hearing aid moulds and early intervention services including cochlear implant candidacy assessment.
Out most days at appointments for Edward, Belinda recalls that it felt like she was forever getting her baby in and out of the car.
To say the diagnosis was a shock would be a great understatement: Belinda was completely devastated. She’d had a very normal and healthy pregnancy without any risk factors for hearing loss, including no history of hearing loss in either family. Andrew constantly reassured her that “everything would be OK; they just had to play the hand they were dealt.” However, Belinda grieved for what she thought was lost for her son: friends; completing school; getting married; having children of his own – ultimately, the choice to do anything he wanted.
In a fog of unknown, Belinda researched the possible causes for Edward’s deafness, sought out other parents’ experiences, looked at cochlear implant technology and habilitation strategies. Above all, she worried for her son.
All the while, here was a beautiful little boy growing quickly, very visual, “commando crawling” around the house and loving being outside. Really just a very happy and content baby who charmed everyone he met with his big blue eyes.
Edward babbled like any other baby for a while, but, after a few months, he started to growl and then didn’t make much noise at all. Both Belinda and Andrew were prepared for this: It was a sign that he couldn’t hear his own voice and the noises he was making. Edward would open and close his mouth at his parents – as if he was talking, but without making any sound; perhaps this is what it looked like to him when he saw others talking or singing.
And, despite wearing hearing aids, it became clear that Edward wasn’t receiving much benefit from them. Testing was consistent with what was observed at home: Edward was profoundly deaf. Receiving a cochlear implant was what Belinda and Andrew held on to, giving them hope that one day their precious bundle would hear and speak and participate in life to the full.
With Edward profoundly deaf, the decision to implant was easy: As he had no residual hearing to lose, it was a case of trying the cochlear implant or Edward would face a life of silence and more than likely, never speak.
Around this period, the cause for Edward’s hearing loss was revealed. Unrelated to a syndrome, his hair cells simply couldn’t transmit sound to the hearing nerve. Belinda and Andrew were surprised to learn that they carried the recessive gene that caused Edward’s hearing loss, but at the same time, a great relief to know it wasn’t related to any form of syndrome that may cause other challenges for Edward. One positive is that children with the same cause for deafness usually do very well with a cochlear implant.
As soon as Edward had been diagnosed with a significant hearing loss, he was booked into the Baby Hearing Clinic – a workshop of specialists and social workers who coordinate the group and coordinate appointments for the family including all the tests and scans required for Edward to be assessed for suitability for a cochlear implant.
Once it was clear Edward needed a cochlear implant, Belinda was anxious he receive it as quickly as possible. She felt that every day without it, Edward was missing out on sounds and learning. Naturally, both parents were worried about the surgery, but when he was nine months old, Edward had his first implant surgery.
Two weeks later at switch on at SCIC, the first thing Edward heard were the beeping tones of the hearing test. After hearing the first tone, Edward turned to Belinda with a face she’ll never forget: He wasn’t at all upset, just trying to figure out what was going on. Once the testing had finished, Edward could hear voices, and he turned to his mum again and looked as if to say, “Oh, I get it! Mouths open and close for a reason – sound comes out!”
Life remains busy with many appointments to teach him how to listen and speak. To help improve his listening skills, his parents narrate, in detail, their daily life to him, from the time they get up until bed time; from pouring milk on cereal to climbing up, up, up the slippery-dip. All the talking is paying off as Edward can follow simple instructions like “close the door” and “bring the ball.”
At 14 months Edward had a second cochlear implant surgery. Like the first, it went very well. Belinda commented that “the second time round it seemed like a cinch compared to the first.” They knew what to expect and were looking forward to enjoying life with a hearing Edward.
One of the wonderful changes in Edward came shortly after his second surgery. A very emotional moment for Belinda and Andrew as they cuddled and sang a lullaby to Edward, watching him calm and drift off to sleep – something only possible since his started to understand sound.
Just four-and-a-half months since Edward’s first implant switch on, he can now respond to his name, understand simple instructions (“sit down”, “bath time”, etc,) and is starting to speak, saying “woof” if he sees a dog out walking, in a book, or on television, and “mmmmmooooo” for a cow. He has a definite “noooooo” and can use it appropriately, as well as “uh-oh!” and when he hears the beeps when the microwave is finished, it always results in a big grin!
In Belinda’s words, “we couldn’t have asked anything more from anyone throughout the whole process – we have felt so supported, cared for, and hand-held the whole way. What is most valuable is that as we’ve found our feet, we’ve become more confident in teaching Edward.”
“We would especially like to thank Fran, Maree, and Carmel at SCIC Newcastle who answered all the questions we had and discuss anything we were worrying about. Thanks also to Edward’s amazing surgeons Associate Prof Paul Walker and Associate Prof Catherine Birman. The surgery really is the first very large step on the path to hearing.”
“Having a cochlear implant and the life-long cochlear implant services that SCIC provide completely changes the opportunities Edward will have. It really is life changing, and Andrew and I truly believe there isn’t anything Edward can’t do. Just to hear him laugh, make noises, and begin to talk is the most amazing time, and I am the happiest I have been since he was born.”
From the prognosis that Edward would never be able to talk to being assessed as average for his age in such a short time is truly remarkable and made possible because SCIC was there when they were needed – it is a privilege to be able to give Edward such an opportunity.”