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Guest post: Cochlear implants – "We wanted Bobby to hear our voices"

9 replies

MumsnetGuestPosts · 25/02/2016 12:35

Bobby's hearing loss was picked up very early, when he was just a few weeks old. At first it seemed like nothing to worry about. He failed the Newborn Hearing Screening, but doctors said this was most likely due to fluid in the ears after the birth. Then, a few tests later, my husband Dan and I found ourselves back at the hospital, listening to a very concerned-looking paediatrician trying to explain Bobby's condition.

She talked to us for what seemed like an eternity about hairs on the cochlear and the inner ear, producing a 3D model and showing us the different parts. All the while I was wondering what on earth she was doing. Her final sentence was the kick in the stomach: "I'm afraid Bobby has profound hearing loss in both ears."

Initially, we felt very alone. Neither of us had any experience of hearing loss, but we wanted to do everything we could for Bobby. After many consultations, we learnt that due to his level of deafness, Bobby was not going to benefit from traditional hearing aids, but he could be a good candidate for cochlear implantation.

From our research, we knew that children who are born deaf are more likely to benefit from a cochlear implant if it is given as early as possible, so that their hearing and speech has an opportunity to develop in a similar way to hearing children. That's what we wanted for our family. We wanted Bobby to hear our soothing voices when he was upset; we wanted him to hear us laughing and talking to him.

We asked the consultant for an immediate referral and, thankfully, she agreed. But it wasn't straightforward. The assessment process took six long months, full of MRI tests, CT scans, more hearing tests and funding applications. Finally, all the professionals involved in Bobby's case met and agreed he was a perfect candidate for implantation. Surgery to receive his two MED-EL cochlear implants was booked for five days before his first birthday.

Preparing for surgery was scary. It was both the easiest decision of our lives and the most difficult. The surgery involved a six-hour procedure. Should we be putting our baby through such a major operation? During the months of assessments, we had spoken with many professionals and, more importantly, met with many parents and their implanted children, who all loved their 'special ears'. We decided it was the right thing to do to for Bobby and us as a family.

Although rehabilitation after surgery was tough, we had prepared ourselves for the long haul. We would do whatever it took to help Bobby make the best of his new ears. We saw a speech and language therapist and a teacher of the deaf every two weeks, but we wanted to make sure that we had explored all of our options. We found out about Auditory Verbal UK (AVUK), a charity that teaches deaf babies to listen and speak through play-based sessions. Thanks to additional funding from a trust and our local authority, Bobby was enrolled. He was 20 months old when he went for his first session and had no words. After the first day, he said something that resembled 'playdoh'. Age four, Bobby graduated from AVUK with the spoken language skills of a five-and-a-half-year-old.

We chose a path for Bobby that helped him to become a fantastic listener and talker. At every stage of his development, we wanted to make sure his quality of life was the best it could be.

Bobby's implants have made a huge difference to his life. He is a very happy, confident little boy. I'm not saying he wouldn't have been without the implants, but we are very happy with the choice for our family. Bobby is now thriving at a mainstream school with a hearing impaired unit. He has a large circle of both hearing and deaf friends, and enjoys everything life throws at him. We are very proud and we know great things are still to come.

OP posts:
notheroldie · 25/02/2016 13:17

Well done on making that decision to go through with surgery and have the implants. And well done for doing everything you can for your son.
I have a deaf son (mis/late diagnosed) and it can be tough.
I hope Bobbi continues to improve and I hope your experience can help others who may be thinking of surgery for their child. Thankyou for sharing your experience. x

thatsn0tmyname · 25/02/2016 15:18

My partner works for Cochlear and it's great to hear the stories and see the responses to 'switch ons' on YouTube.

iwillnevereatspaghetti · 25/02/2016 15:30

Bobby is just amazing - well done on all your hard work - it's worth it !

lightgreenglass · 25/02/2016 20:03

It sounds like CI has been a real success for Bobby.

As a deaf person myself, I know lots of people with CIs with varying degrees of success. Obviously nowadays the technology is much better than before. My DH had his in his 30s with great success - his deafness is progressive. I have hearing aids, have speech and know sign. I have the best of both worlds - it good to see that Bobby has deaf and hearing friends.

I would like to say that those switch on videos are horribly misleading - I've watched my DSis and best friend having their switch ons and both of them cried in shock not wonderment, they both found it traumatic. They wouldn't be without them now but the switch on was not what those videos make it out to be as the sound is nothing like sound as we know it.

ToDuk · 25/02/2016 20:52

Great! I'm a teacher of the deaf and work with some implanted children. Amazing technology.

PurpleAlerts · 26/02/2016 09:36

I am a ToD too!

Lots of my pupils have CIs and I think they are amazing. I have been working with HI children since before CIs were more commonplace and the outcomes for children are so different even with massive improvements in digital hearing aids which, for many profoundly deaf children, don't work.

I agree with lightgreengrass about the Youtube videos being misleading- Many young children do not react in a positive way for their first switch one- one of our nursery children was switched on recently and she screamed the place down! Now six months down the line she is doing brilliantly but it was tough for her parents at the start and the rehabilitation is a long road that takes a lot of patience and hard work.

One of my implanted children who had one done as a toddler and a sequential CI on the other side at age ten, described her switch on as a sort of electrical sensation- as much a physical sensation as an auditory one. It takes a while to get used to so you can imagine how scary that must be for a little one especially as you can't expalin what is happening.

I always say to parents that it is a sensation of hearing- it doesn't sound like normal hearing- quite robotic and scratchy but the brain does learn to interpret these signals as sound and it gives access to speech sounds.

Good luck to Bobby and his family- so pleased it has worked out well for you.

ToDuk · 27/02/2016 09:27

Hey fellow ToD!
And yes I totally agree with Light and Purple about the switch on videos. Not been my experience at all.
There's a brilliant programme by BBC Alba called Switch On which shows much more realistic switch on stories and is really useful and interesting viewing.

iwillnevereatspaghetti · 27/02/2016 15:45

Every switch on is different my daughter was 2 and nervous, my son amazed! Switch on is such a small part of the journey. Listening and speaking in line with hearing peers is somethiNg mine have both achieved thanks to AV. ToDs get yourselves on one of their courses, our Tod said it totally challenged her thinking ( in a good way)

ToDuk · 28/02/2016 13:12

AV is great. I've been on some of their courses. And yes every switch on is different. I've not known anyone personally yet who's had a reaction like you get on some of those YouTube clips.

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