“ Emma was a delightful baby. She had a sunny disposition; fed well, slept well and was a joy to have in our lives. ike all children, Emma was booked in for the 8 month standard Hearing Test at our local Child & Maternal Health Clinic, and we undertook the test without a second thought as we had no concerns as parents and we knew Emma could hear us so she couldn’t be deaf.
The test went well at first ….Emma responded to loud noises and talking behind her. It was when she was tested with soft rattles that Emma did not respond. “Don’t worry too much” said the Health Nurse. A lot of children don’t ‘play the game’ at these tests and generally there are no problems. We’ll just re-test her in a month on a ‘better’ day”. I was not overly concerned, the Health Nurse had set my mind at ease and I knew she could hear me so she wasn’t deaf.
We went for a second test, a month later at the age of 9 months. I was shocked to see Emma respond in exactly the same way as she did on the first test. Again, the Health Nurse reassured me it was “probably nothing” but to be on the safe side she referred Emma to an ENT to have an audiological assessment and hearing test. This time, a sense of doubt entered my mind, but friends told me some of their children had failed both tests and turned out to have normal hearing, so once again I felt reassured.
My 9 year old son and I took Emma to her ENT appointment not long after that and a hearing test and ABR were undertaken. Once more Emma did not respond appropriately and the ABR, which was explained to me throughout the process, left me in no doubt. To have Emma fail one test, maybe even two you might reassure yourself she was just having one of those days, but to have the same result on a 3rd test undertaken by an Audiologist .… this had to be true. The Audiologist confirmed that Emma had a moderate bi-lateral sensorineural hearing loss. The discussion with the ENT Specialist straight after the test was confronting – we were told Emma’s speech and language would not develop normally without the use of hearing aids and that she would need to wear them for the rest of her life. I remember feeling stunned at that point, but I was calm. “OK, so she’s going to need hearing aids – how quickly can I get them on her?” I remember feeling an urgency to have her fitted; I didn’t want her to miss a single sound. We went out to the car to go home, I put Emma in her carseat, my son into his seatbelt and then sat in the car and cried for 20 minutes.
Telling my husband when he got home from work was extremely difficult – he knew we were getting Emma tested a 3rd time but neither of us had really worried that there would be a problem. Having not seen the clear evidence at the ENT’s office as I had, it was difficult for him to believe what I had been told. Especially since Emma was making all the noises and sounds that a 9 month old baby makes, and would respond to sounds as any other child would. But then, 9 ½ month old babies are always on your knee or in your arms, or crawling on the floor near you. We got on the internet that night and started to look for information about hearing loss to reassure ourselves things would be OK. We told our families, who were in disbelief, and we worried for our little girl’s future – would she attend a mainstream school, would she learn like other children, would she speak like a ‘deaf’ person, would people tease her, would anyone want to marry her? The questions seem so irrational now but at the time it was what was running through our minds.
Emma’s hearing aids were fitted by Australian Hearing at 10 ½ months. We were given the Choices booklet and told that it was important to make contact with an Early Intervention Centre as soon as we felt ready. After reading through the profiles and discussing which direction we wanted to head in for Emma, we decided to go with the Brighton Early Education Program for Hearing Impaired Children and we made contact with them straight away. They offered an auditory-verbal approach and this was important to us as we hoped Emma would be able to eventually attend a mainstream school and have normal speech and language skills. The support we received immediately was amazing. We were still coming to terms with the diagnosis and the empathy and understanding from our Counsellor was incredible. She also provided unbiased information and we felt better able to make decisions about Emma’s future knowing all the facts. We also had a strong desire to meet with other families and see other hearing impaired children, so we decided to attend a Playgroup run by the centre. The first visit to the centre was confronting – lots of ‘deaf’ children in one spot and my child was one of those ‘deaf’ children. I felt a sense of guilt – I should not complain, my child does have some hearing and many of these children are profoundly deaf. However, my Counsellor helped me to understand that any hearing loss has a huge impact on a family and that we were going through many of the emotions and difficulties that these very families were experiencing. It became easier and easier as I got to know the staff, parents and these wonderful children – hearing impaired but getting on with life, learning and having fun along the way. Our whole family has learnt so much through the centre.
One of the things I remember as being important to us at the time, was the need to know why this had happened – was there a reason? We were able to follow this line of questioning through the Paediatric Hearing Loss Investigation Clinic (PHLIC) at Monash Medical Centre. We were told that even with testing, sometimes reasons for deafness cannot be found but we wanted to at least try, and through testing we were able to find out that Emma has the Connexin 26 Gene. Our next question was “Could her hearing drop even further?” We have been told that it generally it static, however this will need to be monitored through Australian Hearing for the whole of her life.
When we look back now to Emma’s diagnosis, we remember feeling so overwhelmed in those early days and so “responsible” for the decisions we were making for Emma, just in case they were the wrong ones. Like many people we were uneducated about deafness, without thinking about it we assumed if you were ‘deaf’ you couldn’t hear anything, that there was nothing in between. It has been a huge learning curve for our family and we have grown as individuals because of it. We have also come to realise that there are much worse things that can happen to your child than to be born hearing impaired.
And now we look at where we are and we see how well Emma is doing, and we can honestly say that the extra time and effort we spent in those early years working on developing Emma’s language and listening skills, was worth every minute. Emma is now at a mainstream school; she is confident, she has lots of friends, and her teacher advises she is in the upper percentile for literacy. She learns easily, questioning everything. This year she has taken on a leadership role in her class, happily assisting younger children or those needing extra assistance. She sees her Visiting Teacher once a week, who advises she is advancing in leaps and bounds.
We know there is no limit to what Emma can achieve in her life. She is an active, engaging, happy, intelligent, funny, well adjusted little girl and we are so proud of who she is. We are truly blessed to have her in our lives. ”