Scott & I waited years to have a baby. We wanted it just so. My pregnancy was as planned as these things can be and we had the nursery all set up in anticipation. I was careful during the pregnancy - no caffeine, alcohol, excessive or bad food and lots of gentle exercise. We read up on how to help baby's development along quicker once born and played music to my belly to soothe the baby. We were determined our child would be reading and writing long before the 'average' age. We had the usual tests and got an 'A' report card at our ultrasound. I remember the doctor saying, "Now you realise we can't test for things like deafness?" Yeah, yeah.
In June 2003, Bella Bambino was born - beautiful baby. A girl - Isabella Mae - and we were besotted. Everyone exclaimed how beautiful she was, right from day 1. At 2 weeks we took her for a routine SWISH test at the local country community health centre. They told us this was a new test that had only been around a year or so. The test was 'negative'. My heart dropped to my stomach. I was speechless. Scott finished the conversation and we left with some pamphlets. It was a black day. We read that the test could be incorrect or she might be blocked up with a cold (well she did have the sniffles). I rang Bella's doctor in tears and he said this had happened to other patients of his and further tests invariably came back OK.
We tried our own tests at home - banging doors and clapping but they were inconclusive as we knew babies are unreliable. We were appeased and although we both felt a knot of dread deep down we kept positive and got on with it. We did the same test again a week later with the same results but again Scott was able to allay our fears by saying, "Of course this test is negative again - as before - we need a second opinion." They told us we would need to see a specialist but were vague on details. We assumed it would be at the big next town 40 minutes away. They rang to say it would be in Sydney - 10 hours away!!! I told the man, "You are really worrying me now. This must be serious." He explained that baby's hearing is very specialised and testing is only available in capital cities so it was nothing to worry about. (It's funny how, at the time, you keep believing the positive even though in hindsight it seems quite obvious something was wrong early on. We just didn't see it as we were going through it). I argued that we would go to Brisbane - 2 hours away, but not Sydney - 10 hours away. We got an appointment in Brisbane.
I will never forget that day. Bella was 6 weeks old. We had done more noise tests at home and had some responses to slammed doors etc. so we were buoyed by this - hoped it was all a terrible mistake. We were shuffled into a yukky waiting room filled with deaf, cochlear implant and decibel charts on the walls but ignored all this as we wouldn't be needing any of it. Thankfully Bella slept while they attached electrodes and fiddled for the longest one and a half hours of our lives - silent - watching screens we couldn't interpret.
Finally the technician turned and said, "I'm getting nothing." Wait...stop...back up a minute...what does that mean? She is profoundly deaf. What does that mean? The meeting was over. Everything a blur. I somehow managed to ask for some information to take home as we couldn't assimilate anything right then. She was gone what seemed an age before returning embarrassed with a few photocopies about hearing aids?? She was very apologetic. (It wasn't until weeks later that we received the Choices book. How I wish we had received it on that first day). We knew nothing and were sent off home with a sorry and a wave.
The two hour drive home was terrible. Silence for the first hour. Couldn't take it in, couldn't believe it or speak it. Someone had ripped out my heart at that hospital and taken it away. Could I swap my hearing for hers and make it all better? No. I was helpless. She would never hear my voice...I love you. What about her life? How would she cope in this tough world with such a huge disadvantage? Would she ever have a husband? Children? A job?
Scott and I started to talk. We tried to be rational and positive instead of emotional. We talked about what we could do - find out everything we could about deafness and do everything to make her life full. We decided to sell our home and go travelling because if she wasn't going to hear then she was going to do everything else life had to offer. She would not miss out. It felt good to be positive and talk through our fears and sadness and this was the first step to overcoming this initial sad news.
At first we didn't tell anyone except a few of our immediate family. I knew that to tell others would mean having lots of long, drawn out conversations about the whole thing and we just literally couldn't talk about it without breaking down. We waited to tell people for a while until we felt stronger and ironically when we did eventually tell other family and friends we found ourselves comforting others as we told them the sad news.
The next few months were a flurry of activity as we empowered ourselves with knowledge. Days spent on internet sites, reading brochures and charts from Australian Hearing (AH) and the Deaf Society. We got Bell hearing aids. I was fine until they put them on her - she was only 12 weeks old and they were so big! I could not even bear to keep them on as we left AH. It was a few weeks before I could bring myself to put them on her but we slowly got used to it. It was hard with a baby as she lay down all day so the hearing aids constantly whistled and popped out. What a torment it seemed.
We started doing testing in Brisbane to find out why she was born deaf but they don't know why (this is the result in 40% of cases). Then due to funding issues between the States we were told we would have to swap to Sydney. The threat of that ten hour drive loomed again. So we started the treks to Sydney. Bella's tests showed her to be profound 'plus' in both ears. Nothing repeatable up to 110 dBs. Even with the hearing aids she was only getting to around 95 dBs - still in the profound range and not good enough to hear speech. We started looking into the cochlear implant (CI). Back to the internet - weeks of reading, questioning.
This was when I joined Aussie Deaf Kids internet group for parents of deaf children. They were and still are one of the best resources I have. Talking to other parents who had been through similar experiences was invaluable. Asking the silliest questions and admitting the silliest fears - all lightened our load considerably and we were able to get some good, honest insight into this new world.
We drove down to Sydney a few times at the end of 2003 - Bell was 6 months old. We had meetings with Royal Institute for Deaf and Blind Children (RIDBC) and Sydney Cochlear Implant Centre (SCIC) - investigations. After much deliberating, we decided to start the evaluation process for a cochlear implant and leave our final decision until we had more information. The only stipulation - if we decided to get the cochlear implant, we wanted to get it as soon as possible to give Bella the best chances of learning to listen and speak. We started evaluation in February 2004. SCIC agreed to fast track Bella, but this meant a big commitment on our part over the next 12 months - fine, we would do whatever it took.
So we started the trips to Sydney in earnest. I was already off work on maternity leave so being in Sydney whenever they wanted wasn't a problem but Scott made the hard decision to quit his job so he too could fully participate in all that was necessary. Constant trips to Sydney - how could we do it? Drive, fly, train? Back to the internet. The answer: IPTAAS - a government agency providing partial funding for medical related travel. Flying would have been ideal but alas IPTAAS would only partially fund one flight for me and we definitely couldn't afford $200 a week to fly Scott. So it was driving, with IPTAAS reimbursing fuel & $47/night for accommodation (which doesn't go far in Sydney).
A regular week - we would leave for Sydney on a Sunday afternoon and drive through the night while Bell slept, as she hated being strapped in the car for hours. Stop outside Sydney overnight and then drive through to her mid-morning appointment. Then over to RIDBC where we could stay in very basic accommodation, relatively cheaply. It was also better to drive so we had the car to get around the city for all the appointments, hospital visits etc. We would have several appointments and leave on the Wednesday usually driving straight back as we were desperate to be home. Thursday, Friday, Saturday at home and then it started again.
We did this for several months during the initial evaluation, surgery and switch on. We knew we couldn't keep this up physically or financially. So once the crucial months were over, and Bell only required therapy and mapping once a week, Bella and I started to fly down weekly for the day and Scott went back to work.
The evaluation usually takes 3 months but we did it in 6 weeks. So Bell got the cochlear implant at 9 months of age - March 2004. In the end it was one of those big decisions - you can never feel 100 percent sure. Every child's experience is different and no-one can see what the future might hold. But Scott and I were confident that we were making the right decisions and any risks of infection or it being unsuccessful now or in the future were small, calculated risks worth taking for the beneficial outcome. We had the utmost confidence in Bella's doctor - Prof Gibson, who is at the forefront in the world in cochlear implant surgery. In the final meeting with SCIC, we spent hours going over every question and worry, no matter how small, so we could be sure our decision was made with all the facts - good and bad. Members of the meeting breathed a sigh of relief when I declared I had covered all 40 or so questions on my list!
Surgery went well although it was a long and horrible day and night spent in hospital. Bella's head swelled the next day but she was up and racing around like she hadn't just spent 4 hours in surgery. Little trooper. Switch on was a few weeks later - 13th April 2004. It went really well and was a momentous occasion. Bella didn't freak out and was quite happy and normal hearing for the first time. I remember saying "Isabella! Hello! I love you!" We took her back to the motel and shared great joy as we showed her all the noises her toys made that she had never heard before. It was wonderful to watch her expression.
While all this was happening we had other things going on. Although we decided to do Auditory-verbal therapy for Bella's cochlear implant, our real beliefs on communication methods were more steeped in Total Communication. We believe that Bella having the CI doesn't change the fact that she is deaf so we want her to be a part of the hearing world and the Deaf community too, not separate as CI users sometimes are. So we started Signed English at TAFE one night/week with a fantastic teacher who taught us signing and deaf awareness - deaf communication, etiquette, humour and the deaf's point of view. We practice our signing regularly and use it with Bella as much as possible. She knows about 40-50 signs already and we find it is great living near the beach that we can still communicate with her when her cochlear implant is off (beach, bath, bedtime). We feel very strongly about being able to communicate thoroughly with her at all times and not just with the aid of a listening device.
Another invaluable resource has been the services of the Dept of Education Itinerant Teacher (IT). This service is provided to country families from birth through school for deaf kids. Our IT comes to our house once a week to do therapy with Bella - a combination of auditory-verbal and signing (at our request). It is a great link that keeps us up to date with information, accessing services & other parents. Once Bella is in school the IT will go into her school regularly to monitor her progress and provide any extra help she needs.
It has now been 10 months since Bella got the CI and her progress is incredible. She is 20 months old and age appropriate in her speech and listening as compared to the 'averages' for hearing children. She can say about 40-50 words and lots of sounds such as ball, mama, daddy, pretty, star, dog etc and also some sentences like, "What's that?" "Bye-bye daddy" and "Roll the ball." She listens to music and nursery rhymes and dances to the beat as well as trying to sing along. In current VROA tests, her hearing has improved to around 30-35 dBs - well within speech range. This confirms that she is hearing most everyday sounds.
It has been an amazing journey. Loads of hard work and commitment. We have been flying to Sydney weekly for the past 10 months and are in the process currently of cutting that back as Bella excels. It has been tough but everything we have done has been so worthwhile. We now realise what we didn't in the early stages of the journey - all our fears and sadness were unwarranted. Bella will grow up to be a healthy, happy, deaf, normal individual who can hear, talk and sign. She is being introduced to every facet of the Deaf world as well as the hearing world and this can only be to her advantage. We now know that no matter what 'Choices' we would have made for her - cochlear implant, signing etc. - everything is fine.
11-Nov-2015 5:26 PM (AEST)