Natasha’s story
I think I should have known. As a mum we think we should have control over everything that involves our children – but this time I didn’t. Looking back now, so many incidents all come down to her diagnosis.
Natasha began school in 2003, we dropped her off and I walked away feeling so empty and I already missed her. She is the middle child and was different – I just couldn’t put my finger on it. Was she ADHD? Why was she such a loner and always upset so easily? She even kicked in the glass of our sliding door for no reason at all. I got a call during the day from the school asking why Natasha didn’t begin her first day of school, especially since she had a sibling there already. At first I thought it was a joke and reassured them that we dropped her off, and then I worried. The school said they would re-check and call me. She was there, she just didn’t respond to her name – I didn’t think any more of the situation.
A few weeks later, I received a call from the district school nurse. She was concerned about Natasha’s hearing and said it may have been the building work going on at the school, but to check after all. Once again, I was blasé about the situation and made a booking to see an audiologist and talked about it with my husband. But we felt all was OK. She had passed all the hearing tests during her health checks, after all.
The diagnosis
That day plays in my mind over and over. I watched my little girl stare into space as noises ran through her right ear – then she would hear in her left ear and put the marbles into slots and then stair into space again, fiddling with a marble in her hand. I remember the audiologist handing me the tissues as I sobbed. How could I not have known?
Many tests down the track -different ENT Doctors, different Audiologists - until we were happy. All confirmed that she had Profound Sensorineural Unilateral Hearing Loss in her right ear – UHL. We still don’t know why and may never know.
School and UHL
Next stage was school. I new immediately that she should go to a state school, but we were enrolled at a Catholic school already and we decided to stay. The worst news was that there was no funding for UHL children. What a blow! So I researched and put together as much as I could on Natasha’s hearing loss and schooling ideas. I conversed with her teachers and the school as much as I could over the next 2 years.
In between we bought the Edulink FM System, which gave her amplification in her good ear. I think the teacher needs to be dedicated when it comes to using these items. She struggled with her reading and writing and by year 2 she was going nowhere. The teacher didn’t take in how serious it was for her to be seated correctly etc, even after we met at the beginning of the term and I instructed him on all these things. Half way through the year, one thing after another happened and we decided to send the children to a small local public school – the choice was the best we had made so far.
A year on...
A year on, Natasha has had a great school report. She is a middle-of-the-range student who receives additional learning support for reading and writing. Her classroom has a Soundfield Amplification System (SAS) which we received through a grant for the school. Believe me this can be achieved anywhere, but the school must be dedicated to want these things too. Our school has been so supportive and we are applying for more grants, so eventually all classes will have the SAS System, which will benefit all children across the board.
Being involved
I too have taken an active part in the P&C Association. This way I have a inside knowledge of what is happening and I can make suggestions to the council – this is worth looking into with school. You need to be known and also you get to meet other parents, who sometimes are in worse situations than yourself.
Prior to changing schools, Natasha had low self-confidence and was extremely shy. She didn’t want to involve herself in dancing or many activities. Now she plays Netball and basketball for the school. She has performed with the school dance group at various concerts and dances outside of school too. She is still shy and doesn’t have a BEST FRIEND. She still lacks confidence but not as badly as before. She gets upset easily and gets frustrated. We are, however, working on all of these problems. It takes time and patience, but we will get there – I think we have come a long way so far. Natasha is a normal kid, with a bad ear – as she calls it.
Bonny's story
Bonny was our third daughter in three years. The labour was long but an on-again-off-again affair. She was my smallest baby – 5lbs 13oz – and perfect. Her milestones were a bit delayed. I thought she spent too much time in the baby capsule. Her dummy was her favourite companion (and my saviour) and I thought her speech was slow because the other girls spoke for her and a dummy always plugged her mouth.
I am an occupational therapist by training and always had an interest in development. Before having babies, I had worked at a large hospital where I was the OT at the clinic which followed up all the babies who had needed special care after birth. I always worked with a physio and a speechie and knew a fair bit about normal developmental milestones. By 18 months, I was concerned about Bonny’s speech. She was hardly babbling.
We started the rounds of ENT, speech pathologist and audiologist but I was seen as an over-anxious mother. Her speech, however, was delayed and we started seeing a speech pathologist.Her hearing was tested and appeared to be normal.
When Bonny was about 13 months, she developed asthma and required her first hospitalisation. She was always sick. Ear infections, tonsillitis etc etc. By 3 years of age, she had been on antibiotics for almost a year and her tonsils were so large they touched in the middle. She had sleep apnoeia. The ENT decided it was time for her tonsils and adenoids to be removed and grommets to be inserted. A scrawny little thing went into surgery and three weeks later she was putting on weight, talking and no longer had asthma. We thought all our problems were over.
She was talking but she sounded terrible. Very nasal and it grated on our ears. After three years of not talking, we wanted to tell her to be quiet. Back to the ENT.
The diagnosis
He thought I was being histrionic but sent us along to the cleft-palate clinic. One of the causes of hypernasal speech is a sub-mucosal cleft of the palate. We eventually got an appointment and arrived at the Children’s Hospital with some trepidation. One of the assessments they do for every child who goes to the Cleft Palate Clinic is a hearing test. Bonny had the hearing test, saw the speech pathologist and then we were called in to see the panel at the clinic and they dropped the bombshell. She didn’t have a sub-mucosal cleft but she did have a short soft palate AND she had a significant hearing loss in her left ear. We would need to follow that up at Australian Hearing. She would also need speech therapy to assist with the hypernasal speech.
Back to Australian Hearing. Bonny was now old enough to use headphones, so they could test the hearing in each ear separately. Bonny had no detectable hearing in her left ear. But her right ear was fine. ‘No dramas Mother. Children with unilateral deafness do fine at school as long as they sit in the right position. Here are some fact sheets for her teacher. See you again in a year.'
So Bonny followed her big sisters to school. She loved it. She was a social animal and school provided her with every outlet she desired. But she didn’t progress academically. She constantly got the wrong message. She couldn’t master reading. I grew increasingly unhappy with her progress.
A unilateral to a bilateral loss
On September 23, 1996, the three girls hopped into the car after school. Bonny was 7 and hopped in the front seat. She turned to me and said, “Mum, everyone sounds like aliens today.” We carried on with the afternoon rush – swimming lessons for one, ballet for the other and then home for homework and dinner. I was testing Bonny for her spelling but she could not hear what I was saying across the kitchen bench. I thought she must have some wax in her good ear so when Bruce came home from work, I took her up to our local medical centre.
The good GP was on and tested her hearing. She had no hearing at 4 and 8kHz. There just happened to be a paediatrician on that night. He saw her and arranged for me to drive Bon straight out to Westmead Children’s Hospital. I was terrified. I drove home, shaking like a leaf. I wanted to vomit. We packed her little bag, her favourite toy, Bicky the Bear, and said goodbye to Bruce and the girls. It was the longest drive of my life. Bonny fell asleep, hugging Bicky – oblivious.
One of the major causes of sudden hearing loss in children is enlarged vestibular aquaduct syndrome. There was some evidence that immediate large doses of steroids could help arrest the hearing loss. We arrived at Casualty and Bonny was started on the steroids. The place was crowded and she spent the night on a gurney, while I dozed in a chair.
Bon was as bright as a button the next morning and I felt terrible. Her hearing had deteriorated overnight. She was having troubles hearing normal speech. The registrar organised a hearing test sometime in the morning. He came to see me afterwards. He said Bonny was unlikely to be hearing anything by the next morning. They would need to check the cause but she was an excellent candidate for a cochlear implant.
It was one of those moments when everything seems to slow. I felt I was in a dream. Bonny did ballet. She sang beautifully and only a few days before had been the star of the show in her class assembly. Her whole life revolved around sound. She couldn’t go deaf. But she was.
I called Bruce, my Mum and Dad and the girls’ school. I wanted Bonny to hear everyone that was close to her before she couldn’t hear us any more. She was so oblivious. So unconcerned. While our life seemed to be spiralling out of control, she played happily with her sisters.
Bruce took the girls home. I didn’t want Bonny to go to sleep. I told her how much I loved her and thought she would never hear me say that again.When she slept, I phoned Bruce and we cried. But he never looks back – always forward. We needed to be positive about the future and not look back at what might have been. I sat up with the nurses most of the night and talked and cried. They listened and held my hand.
As soon as Bonny stirred the next morning, I was awake. She didn’t say anything. I was too frightened to talk. She eventually looked at me and said, “I can still hear things.”
So began our stay in hospital. They did every test known. She was prodded, poked, X-rayed and scanned but no cause for her hearing loss could be found. Every day the hearing test was worse. After about a week, the ENT decided it was time to do some exploratory surgery. He let us come home for the weekend. It was fantastic to be home with the other girls but it was so strange. Bonny could no longer hear us. She remained completely unfazed by the whole thing.
We returned to hospital on Monday and she was operated on the following day. The ENT found a small leak in the base plate of the stapes – known as a perilymphatic fistula. He grafted the crack and we all kept our fingers crossed.
My mother often reminded me how she had said that it was all over now that they had found a cause of Bonny’s hearing loss and I had told her, “No, it is only the beginning.”
Bonny is now 19. She wears a hearing aid in her 'good' ear'. She is at university doing Commerce and Asian Studies. She lives at college and has a job at a local pub. She still loves music and loves to dance. It hasn't been easy - she has to work that much harder to achieve her goals and dreams. Although she thinks that losing her hearing has made her a better person, she does not want her children to be deaf.
Disclaimer: This website is for general information only and is not intended as a substitute for independent professional advice.
