Background - our journey til now.

William and I are not the sort of people to worry about things. So when Henry failed his newborn screening test, we regarded it as not much more than a hassle that we had to go back and repeat the test. Henry had jaundice as a newborn, so we didn’t do the test until he was two weeks old. I remember driving all the way to City Hospital, a sleep deprived mother with a newborn, trying to fit the appointment in while my two year old was at nursery, stressed because they told me I had to keep him asleep for the whole test, no dummy allowed. I was still getting used to my new baby. He didn’t yet have a ‘routine’. I ended driving there with him screaming the whole hour of the journey because at least I knew when we got there he would need a sleep. So being told we needed to repeat the test, that’s all I could think about, dearly wishing we didn’t have to do it again.

Over the next few months he ended up doing (and failing) the newborn screen three times. They kept saying, oh he probably just has a cold (which I knew he didn’t). Finally I changed hospitals and he did an Auditory Brainstem Response (ABR) test when he was three months old. By this stage we had started becoming concerned that perhaps something was wrong. But I knew nothing about hearing loss and I assumed that even if something was wrong, surely in this day and age there would be some ‘solution’, some way to fix it.
Halfway through the ABR test, the audiologist stopped testing, and removed the equipment from Henry and did a complete check on it, thinking it was faulty. It was not, it was just Henry’s ears that weren’t working. When she finished, the audiologist told me Henry had severe hearing loss and would need hearing aids...forever. William was in Egypt for work at the time and I remember texting him, ‘not great results today, a long road ahead, but we’ll get there’. I don’t remember either of us being too devastated. That night, home alone with two kids and no one to really talk to, I cried for our little Henry, who was going to have a more difficult road ahead. You always want the best for your children and I was sad that Henry was going to have things a bit more difficult than most. But when William got back the next day and we spoke about it, neither of us were too worried. Partly through ignorance (we had no idea about hearing loss or actually how long and difficult the road ahead would be) and partly through our eternal optimism, Will declared that everyone has problems, and we just got on with it. There have been some moments since when I have had a fleeting moment of sadness thinking about what could have been. But for the most part, we have just taken each step as it’s come and known that things could be a million times worse. I really feel that I had spare capacity, as a mother and an intelligent woman and that’s why God gave me Henry. I have never doubted that I could do well in this new role of mother to a hearing impaired child.


Henry on the day he got his hearing aids.







When Henry was five months old we started therapy through the Royal Institute for Deaf and Blind in Sydney, with a wonderful therapist named Melissa. Already I had started to have concerns that Henry’s hearing aids weren’t really providing the benefits that they should. Henry still failed to respond to any sounds. Not once had I ever seen him ‘jump’ at a noise. He didn’t blink when his sister screamed next to him. With Melissa’s support and agreeance with me that Henry didn’t really seem to be responding, we began pursuing the route of cochlear implant assessment- to see if Henry was a candidate. When Henry was eight months old, I took him for another test- an unaided test in the sound field. I sat with him on my lap in the sound booth while the audiologist played increasingly loud sounds through the speakers while watching for Henry to respond. By the end the sound was so loud I almost fell of the chair at one point as it suddenly burst through the speakers. Henry did not even flinch, just randomly looked around the room and continued to play with his toy. It was the surest confirmation I had so far that Henry’s hearing was indeed worst than originally thought.

In the meantime I continued to work through the techniques Melissa was teaching me, to teach Henry about sound. It was hard work, not the least because Henry gave me nothing back. Well, he gave me smiles and love, but he didn’t respond like he was supposed to. I talked, and talked and talked to him. I read books and sang songs. And waited for some sort of recognition, some sign that something was going in. Well-meaning friends would say to me, ‘but don’t you think he’s responding, look how he turned to that’. But I knew my baby too well, and could see that it was all just random. Sometimes he would turn when you spoke to him, but it was just coincidence. So when Henry was nine months old, I took Henry to the Sydney Cochlear Implant Centre (SCIC) to undergo assessment.

SCIC were fantastic. Understanding that I was travelling all the way from Dubai, they fit all my appointments in a ten day period and we underwent an assessment process to see if Henry was really getting enough benefit from his hearing aids. Halfway through my first week there, I had a crisis of confidence that I was leading Henry down the route of implants- what if they weren’t necessary? What if he was responding at home and I was missing it, and reporting back to the implant team incorrectly? What if he just didn’t want to perform on the day when they tested him at the centre? The more I learnt about Cochlear Implants, the more concerned I became about making sure that they were absolutely necessary for Henry. Suddenly hearing aids seemed so easy. No worry about infections. No mechanical device that could break down. No major surgery. The team at the centre, together with Melissa, were fantastic, in reassuring me that they wouldn’t advice the implants unless they also agreed they were absolutely necessary. We did another test on Henry in the sound field where they could test up to 120 dB. We sat in the sound booth for ages, patiently going through each combination of frequency and loudness. The results were consistent and clear. Henry’s hearing ability without hearing aids was around 110 dB (this is about the loudness of a chain saw, or jet airplane). With hearing aids he could hear around 50-60 dB. Enough to get some sound, but not enough to hear and distinguish speech. The audiologist at SCIC was in no doubt, ‘well, he is definitely profoundly deaf’. The only chance he has of hearing is with cochlear implants. It was a little bit of a shock to hear her say that, since initially we were told that he had ‘only’ severe hearing loss, yet at the same time it was good that all the results were consistent and we knew for sure now.

This year, 2011 is going to be a big one for Henry, and all of us. Henry is booked to have both ears implanted with cochlear implants on 20th January. I am nervous and excited at the same time. Mainly excited. Henry is ten months old now, and I am starting to notice the effect his deafness has on his behaviour and feel his frustration. He has given up banging the table or his toys because they give him no feedback- he cannot hear the noise he makes – so he hits himself in the head, over and over. It makes me sad to see this little boy, bang, bang. When he was about five and six months old, he was ‘babbling’ like babies are supposed to. He has given up all that now. Now he just squeals. Sometimes it drives me crazy, such meaningless squealing, yet I know that he must be able to feel the sensation within somehow. Or when he has his hearing aids in, he can probably hear himself, which must be very rewarding. Probably the one thing though that brings a tear to my eye is when you walk into the room talking to him, foot steps clip-clopping on the floor and he hasn’t yet seen you and then he sees you, or you touch him, and he jumps like you have scared the hell out of him, where did you come from?

Sometimes I look at our beautiful little boy and think what a long journey he has ahead. While he is a baby it’s easy to wrap him in my arms and feel that I can protect him from the world. However I know that I need to make him strong and independent. He will need to be resilient. And yet, I don’t want him to see life as a challenge to be fought and won. I want him to enjoy life. To be free to choose his battles. I am conscious of not pushing him too hard to prove a point; ‘see what he can do, even though he is deaf’. He will have his strengths and weaknesses like any child. All I can hope for and work towards, is giving him every opportunity so that his deafness is not something he considers when weighing up decisions and choices in the future. I want him to feel that he can do anything he desires. Although there will be things that will be more difficult for him than other children, as William says, everyone has issues.