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|Adam Higgs: An Australian Implant Story|
It was October 1994 and we had just celebrated the first birthday of our youngest son (Brett). We were so blessed to have two such healthy boys. Little did we know what was just around the corner. On October 24th 1994, our oldest son Adam (then 2 years old) was admitted to hospital because of a high fever. The diagnosis was bacterial meningitis.
Adam was so sick that his life was in doubt. We were told if he made it through the first 48 hours he would probably make it! Our whole family was in total chaos. The next twelve days were so hard. The hospital had tried to organize a hearing test before we left the hospital but it was not possible.
Finally the day came to take him home and he was a little broken boy. He could not sit without toppling over, could not crawl or walk.
Little did we know at that time that he couldn't hear either.
He was scheduled for a hearing test 4 weeks after he left hospital. This was supposed to be “just a precaution” after everything had settled down with his body. We were told that hearing loss can be caused by meningitis but that it could be anything from really mild high tones loss to a profound hearing loss. But not to worry- it was just a precaution.
After being home a week or so, we both suspected that Adam was not hearing. I remember the day that I really knew. I went for a walk with the boys in a double pusher (pram). This dog ran from nowhere up to a solid fence (we couldn't see the dog) and it barked furiously. Brett and I jumped out of our skins. Adam didn't even turn his face.
Later his hearing tests and ABR would confirm our worst fears. He had a profound hearing loss. Fortunately the audiologist that we saw suggested we look in to a cochlear implant.
We visited the implant surgeon and he immediately told us of the risk of ossification (where the cochlea fills up with bone). He scheduled a CT scan within a few days. To his surprise Adam was already showing signs of ossification, only 3 months post-meningitis. The surgeon was very aware that we needed to move quickly if we wanted to implant Adam but at the same time, he did not want us to feel rushed. I hold this man in such high respect to this day, for his words "No matter how far we proceed with the planning of this surgery, even up to the point of wheeling him in to the operating theatre, if you change your mind you just say "STOP" and it will stop there and then."
We looked at all the risks of surgery and implantation, but in the end we strongly felt that for our son there was only one choice. He had experienced hearing for 2 years and had begun to speak beautifully and if there was a chance (any chance!) that we could give him back the joys of sound, we had to try. During the time between diagnosis and implantation we had to watch with total heartache as Adam's speech became slushy and unintelligible because he was receiving no auditory feedback even with the highest gain hearing aids they could fit.
Adam was implanted on January 24th 1995 with a Nucleus 22, 3 months after his meningitis.
Everybody had warned us that his implant was not a "miracle cure" and that there would still be a lot of hard work to come. I kind of knew this, but at the same time part of me yearned for a return to my "normal life". I strongly hoped that Adam would just pick up where he left off. Of course that wasn't the case. The next 6 months were very challenging. Adam began to respond to sounds and seemed to understand what was being said but it took awhile before we started to see it coming back out in him using the words himself. I actually kept a journal of what he had said each day and a list of words he understood (receptive language) and words he used (expressive language). There came a time when there were too many words to keep up with so I stopped doing it, by this time the journal had served its purpose. It had provided me with some visual proof that Adam was progressing!!! When I look back on his journal now (with the benefit of greater understanding and hindsight) I am actually amazed at what he did achieve so quickly.
One of the very brief entries was 2 and a half weeks after his “switch-on”. Earlier in the day, my mother had described Brett as being "all sticky". Later that night Brett after finishing his dessert he had most of it on him!! Adam, unprompted, said: "Brett, all sticky". Now I marvel at what he could do so soon after switch-on, but at the time his progress seemed so painfully slow. I would say that it took him a good 6 months just to start to use his implant and "hit his straps".
So we embarked on early intervention using auditory verbal therapy provided by the Cora Barclay Centre in South Australia. The team were wonderful and supported both Adam and our family through those early years.
When he went to preschool, he attended a program with a teacher of the deaf on-site, and it was also an Auditory-Verbal Therapy (AVT) program. The preschool worked on reverse integration where the hearing impaired children were integrated with their hearing peers.
Adam went to a private local mainstream school (Immanuel Primary School) when he left the preschool. He was fully mainstreamed with AVT provided by the Cora Barclay Centre. His first year was really tough. He went from being at a preschool where both the staff and students were aware of his hearing loss- where everyone around him knew how to effectively communicate with him and manage his hearing loss. Now he was the first hearing-impaired child to attend this mainstream school… Talk about trail-blazers!
The school principal was incredibly supportive of Adam. We were incredibly fortunate to get the most wonderful teacher for Adam's first year of schooling. She had never taught a child with hearing impairment before but she was like a "human sponge". She wanted to know all there was to know about Adam's hearing loss and how she could meet his needs. She set a pattern and continued to be his greatest advocate amongst the school staff.
By the end of the year, he performed in the class concert and was really an accepted part of the bunch. He loved school and was progressing really well with reading and writing. One day he even did a show-and-tell about his cochlear implant. It was totally out of the blue and unprompted, but he lifted his shirt and showed the children his implant, the coil and headset. He gave them his version of how it worked. This included "the sound magics itself up from the processor to my ear"… I am sure it does seem like magic to be able to hear again.
Adam is now 8 years old, 5 and a half years post-implant. He has recently been tested for expressive and receptive speech and language, as well as social skills, and he is age appropriate- right up there with his hearing peers! His speech is intelligible even to people who don't know him! He is so happy. He loves his implant, and he loves to talk. He keeps us all on our toes with his questions and in his efforts to work every compromise to his own advantage… Actually his specialty seems to be verbally manipulating his parents!!
He is a confident, out-going young man with the world at his feet, and he has the determination to do anything he wants, and the belief that he can do it. He has been well supported by his family and the staff of his school and the Cora Barclay Centre. The things he can do with his implant are just mind-blowing!! He can imitate the noise of the locks the car when I lock all the doors, as well as so many animal sounds. One of my favorite achievements of his concerns films. He is able to listen to a song from a film on the radio and tell me what happens in the film when that part of the song is playing … Pretty awesome stuff.
Would we do it again? No question. There has never been a moment when we doubted this was the right decision for Adam.
They say things happen for a reason, and in this case I can understand it. Of course it has been hard, but Adam, in his own way, in his own corner of the world, is educating others about hearing loss and cochlear implants. Equally important, my son is shattering all those stereotypes about "what deaf children can achieve".
So if you want to listen to him speak for himself, please listen to the recording of him saying a short poem he learnt for school in 1999.
Copyright © 2001, Naomi Higgs