Recovery

Henry has recovered remarkably from such a major surgery. Besides the obvious physical evidence, you wouldn’t know that this time last week he was in surgery. He is our smiley, happy Henry. He had a check-up with the surgeon yesterday, who was very happy with how the stitches are healing and was very positive about how Henry would respond at switch-on next week. She reiterated that his brain response which was tested during surgery was good. So we have every reason to be optimistic with how Henry will respond and progress when he has access to sound. So very exciting!
Now that the swelling has come down, we are able to see the profile of Henry’s implants in his head. I thought this would bother me- that this little baby who I gave birth to now has a titanium microchip marring the side of his head. However when I see the slight profile on the side of Henry’s head, I just feel excitement. Excitement for the opportunities Henry is being given, for the possibilities, excitement for our future.
I have included a picture below of the implant component. The round part at the top (which is the magnet) is a bit bigger than an Australian fifty cent piece, just to give an idea of size. The square bit is the microchip. And the thin curved tendrils at the bottom are the implant electrodes which are threaded into the cochlear.

How does it work?

The external sound processor captures sound and converts it into digital code. This is sent through the external coil (Henry hasn’t got any of these external components yet) to the implant. The implant converts the digitally-coded sound to electrical impulses and sends them down the electrode array which is positioned in the cochlear. The electrodes stimulate the cochlear’s hearing nerve, which then sends signals to the brain, which are interpreted as sound. This is different to how normal hearing works- in normal hearing, hair cells within the cochlear vibrate to create sound signals for the brain. When Henry had hearing aids, he was still hearing the ‘normal’ way, the hearing aids just amplified the sound signals to his cochlear (unfortunately it just could never be loud enough for Henry to hear). With the implants, what he hears will be completely different to what someone with normal hearing hears – it will be a more ‘digital’ version of what we hear. This means many of the nuances and sound variations will be blurred and he will really have to work hard to learn to distinguish all the different sounds and filter out those that aren’t necessary (for example, background noise). Isn’t technology just amazing!!!!

 

Surgery

We are home from hospital. In a seven hour surgery yesterday, our fantastic surgeon implanted Henry with bilateral cochlear implants. The surgery was a success and Henry is recovering well. Already the past 48 hours have crystallised into a montage of discrete memories.

• Henry in just a nappy, playing on my bedroom floor before bed the night before as I captured his profile on camera, lest the implants changed the shape of his head forever. Henry; happy, laughing and playing with his soccer ball, oblivious to what the next day would bring. Me; watching in wonder at this beautiful little baby who was my son, feeling so thankful to God for this amazing gift and hoping that I was doing the best for him.
• A sleepless night, waking at Henry’s every cough, worried that he had caught his sister’s cold and that he wouldn’t be well enough for surgery. Ending up in Imogen’s bed with her to comfort her as she was feeling so miserable with her cold. Hardly the restful night that I had hoped for before such a big day.
• Waving goodbye to Grandma Karen in the morning. Seeing the tears she was holding back as she assured us that everything would be fine.
• Walking into the hospital with a happy, smiley baby boy. Overwhelmed again by the huge responsibility that parenthood brings and hoping we were doing the right thing.

Will and Henry arriving at the hospital

• As we sat in the waiting room, the surgeon stopping by to say hello to Henry. Her confidence and enthusiasm was something that I reflected back on all day and made me feel immensely at ease.
• Standing in hospital scrubs, holding Henry as he was put to sleep for the surgery. Turning around for one more kiss as they led me out of the room. And going back for another...!
• Sitting in the sun at the coffee shop with William, watching my watch and trying to guess what the surgeon would be doing now.
• Getting a phone call four hours in, letting us know that they had finished one side and it had been a success. Oh, the relief. I was so happy at that moment.
• And then getting the call that the surgery was over and we could come and see our little baby. As we walked in, William reminded me, don’t forget he is going to be all bandaged up. I was prepared for that. But I wasn’t prepared for how fragile and vulnerable he would look. He cried when he saw me, as if to say, this is not a fun place mummy, why did you bring me here? I wanted to give him a huge hug, but he was awkward and miserable. I tried to breastfeed him but he had to be really coaxed into it, and I held him gingerly, trying not to put pressure on his head.
• The long night. Blood on my jumper and all over Henry as his wounds bled. Thankfully ‘to be expected’, but still unsettling.



Henry after surgery

• Will turning up at 6am the next morning, armed with coffees and Karen’s banana bread and ready to take over holding Henry. Henry was still so miserable, he threw up, he could barely keep his eyes open he was so lethargic and we really wondered if we would be going home that day. Then suddenly at around 9am he transformed. I fed him weetbix and he got all his energy back and started smiling again and kicking around and was back to being our little Henry.
• The unveiling. Both Will and I expected you would see the implants in his head profile more, but you can hardly notice, only if you are really looking.

Having the bandages removed before we left to go home



• And then something beautiful- Taking Henry home, still fragile and vulnerable and in pain – and then that moment when he saw his sister Imogen. His whole face lit up and she knew intuitively what he needed – she danced and sang ‘shake your bom-bom’ as she shaked her hips and he laughed and laughed. Less than 48 hours later and we were almost back to normal. And yet so much has changed!

  Postscript: The next two weeks are for Henry to recover, then he will be ‘switched on’ on 4th Feb.

Anticipation

On the eve of Henry’s cochlear implant surgery, I feel a mixture of emotions. I feel excited and lucky that Henry is being given this opportunity to access sound, especially lucky that Henry gets to have two implants at once. In another time and another place, Henry may not have had such options. I feel eternal and overwhelming gratitude to Professor Graeme Clark and all those who were involved in developing the cochlear implant, who persevered against medication opposition, fought for funding and kept researching and developing and did not give up until they a developed a way to give deaf people a way to hear sound. I feel worry, worry that the surgery will proceed without complications, that nothing will go wrong. I feel hope, hope that the implants will work well- they can test them during the surgery and tell us how well the brain responded to the electrical impulses - It seems that every step of the way, things have been worse than expected, so I’m hoping this time we get a ‘good’ result.
Overlaying these ‘mature’ emotions is a childish feeling of ‘it’s not fair’. Our baby Henry who hasn’t yet even learnt to walk, who has no idea that he even has a ‘problem’; doesn‘t understand any of this and trusts us implicitly. Who will have to work so hard for something we all take for granted.
And yet, what do I look forward to? What is my hope? So much. And yet one little thing. For my baby Henry to hear me say “I love you”. And one day to hear Henry say that back.

Decisions

An overwhelming part of being a parent is the responsibility to make decisions on behalf of your children. Some decisions are easy and inconsequential- what should we dress our baby in today? Some decisions are hard and yet will probably work out either way- which primary school should we choose for our child? Some decisions seem so important - I will fight with my three year old for an hour to get her to eat something sensible for dinner – yet I know in ten years time I won’t even remember this. And some decisions that we make in our own lives will have an enormous impact on our children – a new sibling, a decision to go back to work, a house move. Every minute of every day, we juggle choices on behalf of our children, about our children. And we don’t always get it right, we make mistakes- hopefully just on the small things. But all we can do is to keep trying- trying to do the best for our children, trying to be the best parent we can be, to take advice, but to trust that in our heart we are up to the challenge, that despite any formal training, we are qualified to do the right thing by our children.
Australia has a good solid framework established for parents of newly diagnosed children with hearing loss to enable the parents to make choices about their child’s future. Unfortunately, living in the UAE when Henry was born, our decision process was a lot more haphazard, ill-informed and random. We made decisions without realising we were making them, or really understanding the issues. My information came from a dangerously easy, yet enormously confusing source: google.
In the end though, the path we have chosen; to have Henry receive bilateral Cochlear Implants, in less than a weeks time now, is the same choice we would have made, had we known all the information at the beginning.
We know that Henry is deaf. And cochlear implants are not a ‘cure’. The journey starts with a long invasive surgery and that is the easy part. Henry will have to work hard to learn to interpret the ‘sound’ provided by his implants. And then he will have to learn to use that sound to listen, understand and then eventually speak. He will have to work hard every step of the way, together with us as parents and his therapists, audiologists, the whole team of us. However, we are making this decision because we believe it is the best for Henry. There is a big world out there, and this world communicates through speech. Cochlear implants are the best chance Henry has of learning to listen and speak, and for this reason we embark on this journey.

Staying motivated

I have always prided myself on my ability to work hard and achieve results. In school, university, and in my job, I pushed myself to do well and was rewarded with excellent marks, recognition, pay rises. But I have realised now that, that’s easy. Do you know what’s really difficult? To work hard, and not get results. No feedback, no recognition. But to keep going, to keep putting in maximum effort, whilst getting almost nothing back.
When I started Auditory-Verbal Therapy (AVT) with Henry, I was so motivated. I plastered reminders all over the house and tried to incorporate the activities into every waking moment. However as time went on, Henry didn’t respond like he was supposed to, and I felt like I was stuck on the first lesson over and over again, waiting for a response so we could progress. I know now it’s because his hearing is far worse than originally diagnosed and his hearing level is just above my speech level. At least I know that he is not just slow. However now I feel in limbo. I know that I need to keep working with him, keep the auditory pathways open, keep teaching him about sound. But it’s tempting to just wait until he gets the implants and gets ‘switched on’.
My therapist, Melissa, encourages me to keep going, to at least get myself in practice, so that when he does have his implants, I am already doing many of the things I need to do, by habit. She reminds me that although he is not going to hear all, or even most, of what I am saying, at least he may get some sound, some benefit from what I am doing.
And I know this is true, so I sing songs and read books and talk and talk and talk. I don’t think he hears any of it, but there is a chance. And for this chance, I keep going.

It's all relative

As if Henry’s hearing problems weren’t enough to keep us busy, Henry has suffered respiratory problems for the last five months. He has been hospitalised three times with bronchiolitis and pneumonia and has been on up to fifteen different medications a day. Since Henry was born ten months ago, I don’t think a week has gone by where we haven’t had at least one doctors appointment. William’s company provides health insurance to its employees and their families. A few weeks ago the health insurance company rang and said they were cancelling their insurance for the entire company as it was costing too much money to insure Henry!
My greatest concern right now is trying to get Henry healthy enough so that he can cope with the surgery next week. I have turned into super-paranoid mum. I am wearing a singlet and jean shorts in the warm Dubai winter. Henry doesn’t own a lot of warm clothes, but everything he does own, he is wearing- jumpers and two pairs of trousers, hats, poor baby can barely move. At 5pm each day I run around the house shutting doors, lest the slightly cool Dubai air breeze slip into the house and find its way into Henrys lungs. But he continues to wheeze and sniffle, so I continue to do all I can to get him better. Herbal remedies. Steroids for his lungs. The horrible nasal spray that he just takes in his stride. A heat pack to sleep with. If only sheer worry alone could make him better...
We had a check up with his paediatrician a few days ago, and he was also concerned that they wouldn’t clear him for such an intense surgery in his current state. He wrote me a letter to take to the doctors, explaining that while Henry seems unwell, relative to how sick he has been over the past five months, he is actually in good condition.
We leave for Australia on Tuesday. My hope is that he will thrive in the warm Australian summer.

Imogen



Immi playing with Henry

Henry has a three year old sister. Before Henry was born, I worried about how she would be affected by the introduction of a new member to our family. I worried that our special mother-daughter bond could be compromised or at least changed forever. As an only child, Imogen was naturally our only focus. William and I could talk for hours about small things she had done through the day. I worried that she would become ‘lost’ as just another one of our children. However our fears, although natural, turned out to be unfounded. I have learnt that my love as a mother is not a finite quantity that I need to divvy out. Instead, the joy that Henry has brought to the family seems to have created even more love, within our family and for each of our children. In relation to Imogen, since Henry was born she has welcomed him with love and acceptance, regarding him almost reverently as her special little companion in life.

As Henry’s hearing problems began to become apparent, I was conscious again of the effect all this would have on Imogen. I need to balance teaching her to be loving, considerate and even protective of her brother, without requiring her to ‘look after’ him. She should not feel a sense of duty towards Henry, but rather just love and care for him, like she would any other sibling.

The bond between Imogen and Henry is already incredibly strong and sometime I get a glimpse of the future, when we as parents will be relegated in importance, and the friendship and love between Imogen and Henry will just grow stronger as they share life experiences and grow into young adults and beyond.

Imogen knows that Henry wears hearing aids of course (she calls them his ‘phonaks’), but we have not made a big deal about them, and she just assumes that all babies have them. We have a box in her room where I put clothes that Henry has grown out of, so that I can pass them onto another younger baby that we know. When Henry got new molds for his hearing aids recently, I explained to Imogen that Henry had outgrown his old ones; “we will have to give them to Bayden then, won’t we mummy?” I just let it go, all too soon she will be well aware of her brother’s ‘difference’.

A few times Henry has managed to pull his hearing aids out and when I have not been there to intervene, she has naturally and instinctively grabbed them out of his hands before he could put them in his mouth and immediately ran with them to me. I know some mothers would be nervous about leaving their three year old and ten month old playing together, but this is the only way I will actually leave Henry alone. I don’t leave him playing by himself in case he does pull his hearing aids out and choke on them (every time I have had a close call, I always imagine how tragic it would be for a baby to die choking on his hearing aids). Yet when Imogen is with him, I am happy to duck out of the room for a few minutes because I know that if he pulls them out she will intervene- she has learnt to recognise the sound of the buzz of the aids as soon as they are disconnected from his ears and quickly responds. The moment that stands out most clearly for me is driving from Sydney to Woollongong by myself with both kids in the back, Henry in a rear facing car seat, so I couldn’t see him. For some reason he had his hearing aids in- now in the car I usually take them out- maybe after this incident! Anyway, we had just turned onto the freeway and I was in the third (centre) lane doing 110km/hr. Next thing I know, Imogen (then not yet three years old) said to me ‘Mummy! Henry is eating his phonaks!!’. I remember the fear, the pit in my stomach, the slow panic that gripped me. I wasn’t in a position to pull over the car, so all I could do was lean back and undo Imogen’s car seat buckle while keeping my eyes on the road. Without needing to be told what to do, she jumped out of her seat, pulled the hearing aids out of Henry’s mouth, handed them to me and then hopped back into her car seat. I was so proud of her maturity in that moment.

Imogen and Henry under the Christmas Tree



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.