Tag Archives: Cochlear Implants
What great PR for Taralye to have this aired on Channel 10. Sarah Murdoch as Ambassador to Melbourne’s Oral School for the Deaf, Taralye, visits the centre and talks to families about how the Cochlear Implant has changed their families lives.
It was a strong reminder that services such as Taralye are vital to families with Hearing Impaired kids. Watching Chantelle , the mum interviewed, revisit the moment when she found out her first child was deaf rang true as one that never leaves you. We have come a long way already with Harry in the last 18 months and nearly 2 1/2 years since that day . It has not all been the perfect scenario but he is moving ahead at his own pace bringing sound to his world.
You might notice there are a number of comments on the Channel 10 website under this segment from members of the Deaf community who felt Sarah Murdoch did not choose her words well… she referred to the children at Taralye as becoming normal rather than being deaf..we all know what she meant .. the gift of sound is not accessible or chosen by all deaf people/families, but for those whose lives the Cochlear Implant touches , it is without doubt the most incredible invention and a precious gift.
If you live in Melbourne please support Taralye this weekend by coming along to their Market Day fundraising event
For more details check out their website
This is Harry’s first speech lesson learning the prompt technique for the sound B. We have started speech earlier than usual ( normally it starts at 3 years) as I have been the pushy mother that insisted it was a good idea. Never one to stop still I noticed with the Specialists that he is mastering the sounds for the consonants “M”, “N”, “G”, “K”/ “C”.
But there is no attempt on his part to try to copy any words that start with the letters “T”, “P”, “B”, “H”, “D”.
These sounds are made from the front of your mouth , whereas the sounds listed above that he can do, are sounds from the back. The normal progression in developing these sounds is when a child masters the expellation of air ( is that a word) to allow them to shape these sounds that are made further toward the front of your mouth. By 12 months most children would use “plosive” sounds and nasal sounds (p,d,m). This continues through to 18 months with an establishment of all the vowel sounds.
So where is Harry with all this.
He has not mastered the plosive sounds and has mastered about 1/3 of the vowels at this stage. So we are trying to work out whether he might have a motor skill issue that is stopping him from forming those plosive sounds which would generally come earlier than the hard back of the throat sounds of “G”& “K”. He is certainly hearing them, as his comprehension is on target with a child his age ( as opposed to his hearing age). But he just never tries to imitate any words beginning with these sounds.
As he has experienced some delays in his overall gross motor skills ( such as standing, walking , sitting) the Specialists are guessing that there is a possibility of a link between this speech delay and the gross motor skill delay. That link could simply be that he had an All Mighty infection last September and it is taking the body a while to completely recover and get back to where it was at that point. We also know in little ones, that the body focuses on one major thing at a time and if the brain is preoccupied with walking, then the speech is going to come second.
The one clear thing in all of this muddy water is that he is developing. The speech is coming along. Maybe not exactly in the order that other CI kids have shown, but despite the lack of some sounds he is joining more than one word to make short 2-3 word sentences. Every time he practices them they get clearer and clearer as long – as they don’t include P’s or B’s , T’s D’s or H’s!
He says” Hear ya go” when he is waiting his turn for a musical instrument in a class setting and the instrument is being passed from kid to kid, before he comes to him. He also says it to us when he is passing us a toy.
He says “See ya” when someone is going , along with “Gye , Gye” in stead of Bye , Bye. And there are many more such phrases.
He says “Ank you” instead of “Ta” ( something I am immensely proud of !)
By 24 months a child would possibly have a vocab of 30 words or more. I don’t think Harry has quite that many as about 6 of his are animal sounds, but he is not that far off. His hearing age is documented as not quite 12 months now, as we have to take into consideration the 6-8 weeks without sound during and post-op of the period of Infection last year.
So, all in all, he is doing so well.
I am super excited writing this post. Tonight I met my friend Jane for an impromptu picnic dinner in the park and she brought along a sun hat I purchased for Harry that she was trying to make pockets to put the processors in.
The design so exceeded my expectations.
To be truthful I was doubtful it would work as putting pockets on the outside of a sun hat and hoping the magnets would sit underneath when you couldn’t see if they were in place or not, was a tall order. The hat was just a regular Toshi design ( found in most boutique kids wear and baby wear stores) but I bought a medium size so that it wasn’t too tight – I was thinking the headband would need to go underneath.
So Jane has added some pockets to the outside of the hat above the rim to house the processors . Then as on the headband design , there are small slots to feed the coil and magnet through inside the hat. You have to move the magnets into place with the hat over the top but I am now pretty good at knowing where they sit on Harry’s head after 6 months of putting them on several times a day. I used the flashing lights of the processor to tell me the magnets were in place then tightened the hat with its drawstring. The hat also has a neck tie to ensure it doesn’t blow off. Tonight Harry rode and crawled around the park for over an hour with the hat on and was clearly hearing my calls as the microphones were on the outside of the hat rather than having fabric block some of the sound.
It is incredible because I was wondering how Harry was going to cope through Summer with a headband and a hat. Certainly that option would be sweaty and hot and possibly unbearable.
But this is a revelation. My only concern is if something does happen to the hat we lose the CI’s but I have now stocked up on labels that read
“Harry’s Cochlear Implants. If found please phone ….”
What I actually wanted the sew-in labels to say was
“If you find these they are no use to you. It means Harry cannot hear anything and at $90,000 a pair we really can’t lose them. So please phone…….. to return them”
I am sure that I will take as good care of the hat as I do the headband and I am sure Harry will treat it the same way as well. He knows it gives him access to sound and only once has he thrown his headband off in disgust….but that my friends in another story!!!!!!
PS. For those interested in headbands we have tweaked the design so no press studs are required. This will make them easier to make en- mass which I am still trying to do. Stay posted for more updates and I have photos if anyone is interested.
August 19-25th marks Hearing Awareness Week across Australia and 30th anniversary of commercial cochlear implants.
Last Sunday Channel 7 aired another program on Cochlear Implants. The response from viewers to the show last month was so overwhelming they chose to film a follow up program focusing more on children and how CI’s changed their lives. In the show Prof. Graeme Clark, the esteemed inventor of the Cochlear Implant was interviewed and shown video footage of children whose lives he has changed around the world.
Such a humble man. He never thought that his life’s dedication to giving sound to deaf people would result in over 250,000 recipients of the Cochlear Implant and the ability for those people to hear either for the first time or be brought back from a world of silence.
Coincidentally a few weeks ago, Dan decided he wanted to write to Graeme Clark to acknowledge our gratitude for the impact the CI’s have had on Harry. He asked if there might be an opportunity sometime in the future for us all to meet the Professor. A few days ago we received a reply to this letter from Graeme Clark suggesting we contact his team to organise a time as soon as possible. For Dan, this was up there with his dream to meet Keith Richards (but he won’t say that to Professor Clark!!)
Graeme Clark’s work continues today. He has a foundation that assists those who are financially and socially disadvantaged to obtain a cochlear implant. In addition, the Foundation has assumed a broader responsibility to give hearing generally to those with middle ear disease, and in particular indigenous Australians where ear infections are a major problem. The Foundation is also supporting research to achieve high fidelity hearing, acute hearing in noise and musical appreciation with a cochlear implant and/or hearing aid. The pioneering research by Graeme Clark and team has led to the development of a new discipline in medical research, namely Medical Bionics. It will help form the scientific basis for the development of a bionic eye and bionic spinal cord.
It is from his research that scientists were able to create the current neo- natal hearing tests which are catching so many new babies with hearing loss and allowing them access to sound early enough so they are able to enter mainstream schools speaking and hearing along with their peers.
Below is a link to the Foundation’s Website and the TV footage from Sunday night.
This is Oliver and Becky Dennis with their daughter Hope. Hope is 18months old and was also born profoundly deaf. The Dennis family are English and live in North London, an area that was very much a part of our lives before we moved to Melbourne 8 years ago.
Last week the UK Sunday Times supplement ran an article on the Dennis family and their experience of discovering at her birth that their only child was profoundly deaf in both ears. The article describes their journey to get her bilateral cochlear implants.
As so many members of our family and friends live in London, Dan and I were sent a number of emails and Facebook messages about this article. Coincidentally Dan is in London this week and when he read the article he reached out to Oliver to let him know how encouraging it was to read his story of how at only 14mnths Hope’s listening and speaking skills were age appropriate. His story was so very similar to our experiences so far…
Uncannily over the last 10 months we have often discussed what would have happened if Harry, like Tess, had been born in London. With the pioneering scientists and surgeons for Cochlear Implant technology based in Melbourne would we have indeed ended up living here eventually?
For the Dennis Family the London Great Ormond Street Children’s Hospital provided them with an unfaultable service which was fully funded by the NHS (the same as we have here with Medicare).
The story of funding is not so fortunate for those living in New Zealand however, where the Govt only funds one cochlear implant on the basis that you can hear with only one ear.
I can’t even imagine how it must feel as a family to go through the trauma of finding out your child is deaf only to have to then start fighting to get funding to bring them into the hearing world.
For sure this is the Lucky Country………………….
UK Sunday Times Article dated Sunday 15th April 2012
It was a week today that Harry had the CI’s switched on.
Today was the second mapping session at The Cochlear Implant Clinic.
Our aim had been to get through the 4 set programmes of sound placed in processor from the last appointment. We had actually only managed to give him 3.
We spent a great deal of time over the week observing Harry’s reactions to sound in various surroundings. The night after the Switch On, we took him along to the Primary School Bush Dance fundraiser. It is always a jolly night with constant music from a true blue Aussie bush band, and around 300 kids fuelled with slurpies and cheap sausages. It is an outdoor event which diffuses the sound somewhat but you can imagine for a small boy who has never experienced sound before it was one big initiation. Suffice to say he lasted only 45 mins and then looked really annoyed by the whole thing. We can at least credit him with some musical taste as the band was not that hot!
It was a pretty intense week of sound experiences when I look back on it now. It is also really hard to believe it has only been a week as we feel like we have been experiencing the CI’s for much longer.
His least favourite noise experience has to be the sounds of the playground outside his sister’s Prep class at pick up time. The area is like a surrounded courtyard and at 3:30 pm is filled with about 80 Prep kids looking for their mums. I watched his little face screw up tighter and tighter as the noise increases. There were no tears but definitely a look of discomfort. So we have been moving the programme down from setting 3 to 1 to help him adjust to the sounds at pick up time.
Today the audiologist told us to try and not adjust the programmes anymore but let him get used to the reality of noise level. If he is really upset walk away so the sound decreases.
On Monday this week I took him along to a music class with our lovely friend Beata, who has classes that incorporate massage for babies and music and singing. Harry and I attended one of Beata’s courses last year which we both loved and made some great friends. Beata was keen to see how Harry would react to her singing and music now he had the CI’s working. The girls had a day off school so we all went along together.
Now I can see from the pictures what a fabulous time Harry had, but at the time I was sitting behind him and couldn’t experience his change in facial expressions. You can tell he really understood that he was creating a noise himself with instruments. I have read some Blogs of older kids that have learnt piano and other musical instruments. A great example of this and the most inspiring story I have heard yet about a profoundly deaf child following their dreams, is the story of Sophie Li. She is the daughter of the famous Chinese ballet dancer Li Cunxin (of Mao’s Last Dancer fame) and she has a terrific and funny blog called “the Funny thing about…”. On her blog she invites other young adults with CI’S to describe their funniest moment related to wearing a CI.
Her Bio is incredible. She was fitted with CI’s at age 4 and went through normal schooling in Melbourne, achieving distinctions in Ballet as part of her final school exams (VCE). As well as excelling in Mandarin as a second language she also learnt to play the piano and cello. Sophie is a great role model that profoundly deaf kids and their parents can aspire to.
To end the week Harry now has 4 new programmes in his processor that give him slightly louder sounds than last week.
He also has 2 new magnets with more strength. The ones he started with are the lowest strength for babies and he now has the next level up … Thank God as I was one frustrated woman trying to keep those buggers on his head this week…
Perhaps that’s why it feels like we’ve been doing this forever.
As you know there was big build up for Switch On today or HHH as Dan called it. The girls took the day off school; all of the school community was wishing him luck in anticipation as well as all our friends and family.
Yet again, a wise mother I had met at the Early Education Service, (www.eep.org.au our local early intervention support service) had advised me that the Clinic works slowly on the sound levels to ensure the babies don’t get freaked out by their first sounds. Thus it can take up to 3 sessions of mapping before you get a result like the one everyone has viewed on YouTube (www.youtube.com/watch?v=ZDD7Ohs5tAk)
Check out our video ( it is password protected so please insert the password Harry2011)
The Audiologist Rod is trying to explain that the first round of information he is loading into the processor is designed to get electrical current running through the electrodes in order to start stimulating the auditory nerves. His job today was to get enough current sent to the cochlea to start this process through 4 channels , each set with increasing Comfort Levels of sound.
Harry will start on program 1 tomorrow and is required to move through to program 4 by next week when we are back again to set up 4 new levels.
You have to also laugh at Alice telling on her sister Tess in the middle of the moment we have been waiting 9 months for… Princess Perfect she calls herself ( now we know why!)
I thought I wanted to write in detail about the stay in the hospital but now it is over and we are home , I don’t see the point. We are only looking forward to the “switch on” date when Harry will hear sound through the CI for the first time.
For other parents going through this, I was given some sound advice by another mother at Taralye (Victoria’s leading oral language centre, providing services to deaf and hearing impaired children and their families). Her own daughter was 2 years old with bilateral implants ( on both ears). However she was unable to have both placed on her daughter in the one operation due to fluid in the inner ear found on the day of surgery. This is extremely common in young babies due to the immaturity of the ear channel which is not as proficient at draining fluid caused by teething and other common occurrences in kids under 2. So this mum was fully expecting to have her daughter come out with 2 implants and was advised at the end of surgery that only 1 was completed.
She said to me wisely make sure you manage your expectations. If they can only do one on the day don’t worry , the other one will get done 6 months later and they will place grommets in to assist with drainage in the meantime.
The photo above is Harry straight after surgery. Within 24hrs he was at home with a band-aid on each side. It is absolutely incredible.
Video footage of Prof. Briggs taking off the bandgages and replace with a band aid strip…
Harry has his bandages removed the morning after his Cochlear Implant surgery by Prof. Rob Briggs and replaced with a band-aid on each side.