What culture do you identify with?
I am Australian, husband Vietnamese, each child biracial to some degree. Family hearing and we are evolving
Hearing, Deaf, Greek, Chinese, Australian

Does your child have any neurodevelopmental difficulties or diagnoses? (e.g. Attention Deficit Hyperactive Disorder) - Yes- please specify - Text
Arthrogryposis & undiagnosed disease &/or syndrome
Moderate intellectual disability, Ayme-Gripp syndrome
22q, polymicrogyria, Cerebral Palsy, Autism
Is flagged for further investigation once he turns 6
Adhd, sensory processing disorder, hypotonia, hypermobility

Does this child have any neurodevelopmental difficulties or diagnoses? (e.g. Attention Deficit Hyperactive Disorder) - Yes- Please specify - Text
Yes flagged for further investigation of nice turned 6

Initial tests at hospital were inconclusive, periodic re-testing until she was about 1 was also incluclusive, and then after she was about 1 it was clear she had a mild hearing loss.
On the newborn hearing screen, he failed swish and had to be referred to hospital for further testing
Probably around 3 years old, but we thought maybe he had glue ear, or that he was just ignoring us sometimes because he would be very focused on activities. When he went to kindy at 4 years his teacher mentioned he had some flat speech sounds and said we should get his hearing checked.
Suspected when born but never opted to screen until 9 months. Wanted to bond with baby for who he was rather than focusing on hearing levels. Have always embraced bilingualism from birth.
newborn hearing screening then audiology assessment at 2.5 months confirmed
When he was born he failed the new born hearing test
At the hospital during the early screening test
Just after birth when she failed the SWISH test
About 2 years ago , he had his hearing tested and was shown to have minor loss, 6 months ago was retested and was diagnosed with mild to moderate bilateral sensorineural hearing loss
She was diagnosed at the healthy hearing test
At age 5 i thought something was wrong before that but when language was such an issue we really started to worry
After the newborn hearing screening at 2 days old
November 2018. I observed he was asking me to repeat what I was saying when he was in close proximity to me and engaged in conversation. He had x2 hearing tests done in December 2018. Confirming pround unilateral sensorineural hearing loss. He is in a candidacy program for cochlear implant. He uses hearing aids at present until implantation. He lost his hearing over a matter of 2 months. Cause not yet identified.
Our daughter was born at 31 weeks gestation. Discharged at 9 weeks of age. In hospital hearing test... failed twice. Sent downstairs to audiologist where she was diagnosed as profound.
At about 12 months of age, no babbling and hyperactivity
After he had an operation on his esophagus about 4 days later. His personality changed and he became fearful and stop speaking.
When he was three. He put his hands either side of my face and said mummy I can’t hear you. I pushed to have him tested and was found to have a cookie bite loss that seems to be progressing. It is unlikely that he would have been picked up by teachers as yet, he would have just been labelled as a daydreamer.
At birth, unilateral microtia /atresia grade 3 - diagnosed with Goldenhar syndrome at 6 months.
Early screening, although even during pregnancy I never thought that she was responding to sound, I just shrugged it off as she was my first child.
6y.o she could not hear alphabet lettered correctly when not looking at the speaker. She also articulated that she was not hearing well.
Last year after a year of therapy helping her to regulate her emotions her behaviour had improved to a point then I felt it had stalled. She was still experiencing difficulties in social situations, was becoming frustrated and behaviour was returning to challenging. I felt the need for further assessments as it was impacting school, home and life in general for her and those around her. Took her for a hearing test and learnt she was lossing her hearing.
Partner has hearing loss that runs in family so tested regularly throughout early childhood. Diagnosed at 3 after lots of tests that were inconclusive due to not being able to complete them or ear infections.
When the hospital did the new born screening test
Newborn screening just after he was born
At birth when he failed hearing test. Finally confirmed undoubtably at6 month old
When she was three years old and her speech did not continue to develop.
3 years old at check up audiology, passed newborn screening but had parental history
Within the first week of daughter being born we knew something was wrong as our daughter failed the SWISH test 3 times. We were referred to the Children's Hospital for an ABR test which confirmed a permanent bilateral sensorineural hearing loss. This was at about 3.5 weeks of age.
At birth when they did the newborn screening
At approx age 2... prior to this had ‘normal’ hearing. Diagnosed with EVA and subsequent hearing loss.
Hunter’s hearing loss was first picked up with the newborn SWISH test in hospital at 2 days old. We received a formal diagnosis when hunter was approx 3 weeks old. Profound bilaterally.
Picked up on the newborn hearing pilot program
With both girls I suspected hearing loss around age 18mths. Both passed SWISH test as bring hearing at birth/few days old.
When he was four years old and we had his hearing tested after his kindy teacher said he had some flat speech sounds. We thought maybe he had glue ear, because he picked up language at a normal age, and spoke well. He followed instructions and didn't seem to have much difficulty with anything.
Newborn swish test, then confirmed at 3weeks old at Sydney children’s hospital
When we went back to the hospital for a hearing test when she was around one year old
We didn’t, his teacher noticed that he wasn’t picking everything up and asked if we could have a auditory processing test done. The first part of a A P test is a hearing test which he failed. He was in Grade 2
Had a feeling she had some problem but Doctor kept saying some kids take time to talk more. We were on waiting list for hearing test. She slept through faulting fire alarms at day care so hearing test expedited and diagnosed at 2yrs 2months with bilateral profound loss.
Diagnosed as newborn after failing newborn screening twice
My child had a hearing test at 3wks old, due to another child with Unilateral Loss having a routine test. This is when we found out. We didn't have any suspicions otherwise.
When he failed his newborn screening test just profound in one ear other ear has perfect hearing
When she was talking very loud and was only talking in broken sentences, and she was constantly saying huh or what after you spoke something to her
I had no idea my son had a hearing loss until he was diagnosed with a profound loss at as a baby at 2 weeks old. He had a hearing screening in hospital when he was a couple of days old, and he was referred on to an audiologist. Hospital staff had said c-section babies fail the screening often, and it usually ends up being due to fluid build up after birth. This was not the case for our son.
When she was in hospital as a baby with a serious heart condition they did a delayed hearing test which she failed, they repeated it and she had profound loss in one ear and mild-moderate inthe other (got worse)
I first noticed around 2yo she didn’t speak many words. She would always just use sounds like squeaks or grunts. She wouldn’t sing nursery rhymes like her friends the same age. Around 3yrs I noticed she was starting to lip read. Around 3.5yrs one of her daycare educators mentioned it might be worth getting her ears checked. I was 8mths pregnant at the time and her father didn’t think anything was wrong with her hearing. So we didn’t do anything. A couple of months before she turned 4yrs I decided she needed to get checked. Had her ears cleaned (in case it was just excessive wax buildup) and then she did a few tests. Then they put in grommets (which didn’t change the results of the hearing test). She was then fitted with hearing aids. Has mild -moderate high frequency loss in one ear and mild-severe high frequency in the other.
She didn’t pass her first 2 newborn screening tests so was referred to an Audiology team at a hospital. Family said there was nothing wrong, but all the little tests I did at home suggested that there was some level of loss, but I didn’t expect it to be profound, which is what the ABR told us.
At birth when she failed the swish test with official diagnosis at 6 weeks.
After he failed the swish test in hospital at 3 days of age. Tried to ignore it for the three weeks until he was old enough to be tested properly, but it was confirmed.
[Note- we were living overseas when Henry was diagnosed. We now live in Australia] 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 the 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.
My sons hearing loss was detected when he was about 2 months old. I had no idea he had hearing problems or no concerns with his hearing prior to this. It was detected through newborn screening and came as a very big shock. We have no family history of hearing loss. Although he was screened several times as he kept failing the screens, I wasn’t prepared in any way by the professionals testing him.
Not responding to conversations Not turning when name called Hearing test recommended
Our son was diagnosed as profoundly deaf at 4 weeks old
My daughter never showed any signs but she was constantly having ear infections and was often on antibiotics for that. It's when she started prep and the school nurse did an overall health check up that we found out. She still was having recurrent ear infections at that time so was put on antibiotics again and we waited thinking that the fluid build up was what was causing the loss. After multiple tests that showed the same results we were then referred to an ENT specialist. Still we refused to accept the results as there was no previous signs. So we sought a 2nd opinion from another specialist and Australian Hearing who confirmed the same results. She was diagnosed with unilateral moderate to severe hearing loss in her left ear.
Just before her 2nd birthday. Her daycare teachers had concerns that she wasn't responding to sound. Up until then, I did not realise that her delay in responding (if at all) was actually an hearing impairment. After a diagnosis of a Significant Developmental Delay at 4 years of age, her hearing impairment wasn't diagnosed until 5 1/2 years old.
Her hearing loss didnt develop until she was 5 years old. It was very apparent immediately.
Our son passed his newborn hearing screen so we thought his hearing was fine. At his four year old health screening in Kindy he failed his hearing test. This was the beginning of finding out he had hearing problems.
As soon as he was born he wasn’t reacting to sound like my oldest child. I had concerns within 24 hours, and he was diagnosed at five days old.
From newborn hearing screening at hospital
Failed swish test at hospital, thought it was. A false positive, failed it again a week later, still assumed it was false positive. Went to get the abr and then got dx.
At birth. He was born with no ear canal or external ear.
Since day one, merely into the hours of his birth - I knew he is Deaf. The next day or two, we had a Swish referral.
Around 18mnth Difficulty within medical systems, slipped through cracks and incompetance false negative swish, mother infection never investigated at birth etc
The prospect of ULH loss was first raised in a hearing test around age 4(ish), but not confirmed until 5 years, 8 months
From birth but was not identified until 9m through testing.
4 weeks old following newborn hearing screening follow up
Newborn screening pick up her hearing loss this was confirmed with further testing (abr)
About age 3, she required TV and music to be loud, and I noticed if I wasn't facing her, she didn't hear me.
Devastated, it was the hardest day of my life thus far. It broke my heart and shattered my hopes for her. I feel very differently now, but it was a very emotional time
Suspected a hearing problem when I was 37 weeks pregnant - he didn’t kick to noises like his siblings did. Failed 2 hearing screens then formally diagnosed at 3 weeks of age
Aged 16 months he couldn’t follow instructions
At 3 years old when she failed her hearing test with Australian Hearing. We were concerned that she wasn’t talking as well as she should be & our doctor referred us to Australian Hearing.
Constant ear infections, follow ups at hospital for testing but always inconclusive, never thought hearing loss was a conclusion.
From the time we left the hospital as my son received a refer on his swish test.
When she was approximately 2 years old, I realised she wasn't speaking very clearly.

What were your feelings at the time of this realisation? How have these feelings changed over time?
Mildly disappointed because it is a bit of a hassle. Feelings haven't changed much.
Shocked, scared, anxious, worried, upset. I am no longer shocked or scared or upset. I am however anxious about his future, learning and career prospects
Pretty shocked on the first day, mostly at myself because I hadn't noticed the level of his loss. he spoke really well and was extremely good at lipreading as I found out! A lot of people said "sorry" when they found out, but I was accepting of his hearing loss almost straight away because it was his normal and I didn't feel like he wasn't missing anything because he had never had normal hearing. Now I feel the same, accepting that this is his life and yes some things are going to be more difficult for him but hopefully he can do the best he can with what he has!
I did feel despair and grief, not for what you assume. It was about how society perceives us, the deaf community. Knowing that my child will grow up enduring barriers, bullying, exclusion, communication frustration and more. This made me determined to raise strong willed, independent, confident in their own identity and fully aware young people.
I don’t think I was upset. I more just felt like “ok, he has a problem. How do we deal with it? What are the next steps?” I didn’t mind that he had a hearing loss but I was worried about my own skills to “deal” with it. I didn’t know how to ensure he was going to have a great life. I knew it was possible but it wasn’t as straight forward as it may have been had I had a typically hearing baby. I now don’t consider it a problem and don’t like to talk about it in such a way. I have come to understand “deaf gain” from being heavily involved in the Deaf community and experiencing deaf gain for myself. Now I love having a deaf son. It has made my life better. I have learned new skills and made new friends. I now work with deaf children myself and feel passionate about my job and feel my own quality of life has gone up because of it!!
I was prepared for it, considering that both my husband and my family have deaf family members. My husband has a high percentage of deaf males and we found out during my pregnancy that our baby was a boy so it was a strong possibility.
I was devastated, scared and afraid for the future. Now I am still sad that she is deaf, but use this energy to provide her with the best options. I worry still about her a lot.
Overwhelmed. Yes these feelings have changed.
I was worried for my sons future and if there was the risk of further hearing loss. I felt sad that he was having to deal with yet another diagnosis and worried how he would cope with having to wear hearing aids. He was so worried about being picked on and that was a huge concern for me. After he was fitted with aids I celebrated his new found experience of hearing properly. He is improving at school and has improved communication.
Guilty, worried, sad, scared, angry No still the same
Scared worried but also relieved to find out what was wrong
Initially very worried and stressed. The kids are doing well so not so worried now.
I cried, but realised it doesn't matter, he is healthy baby boy.
I was very upset at his future prospects of employment, schooling, worried he would get bullied. Worried about his self image. Worried he may develop depression. After we started the candidacy program and received Ndis funding, he has received therapies to help speech, counselling, met others with hearing loss. While I still have concerns, they are not as consuming.
We were heart broken, scared for her future, worried how we would manage and stressed. Each step.of the process got easier. With the more knowledge, ealry intervention options and meeting other children that have been through the same journey as us, things got easier and we now see with a few modifications, and teaching our daughter resilience we don't think about it 24/7. We are happy, she is happy and it doesn't consume our lives.
Frustration , Stressed, drs didn’t listen to me told me there was nothing wrong with my child and that I was not coping as a mother .... my child was diagnosed at 3 years of age after speech therapy as he still wasn’t speaking and multiple drs ( gp and specialist ) appointments when I kept saying something wasn’t right . The worry is always there, how can I help him catch up on everything he missed out on .... and continues not yo hear how, can I make it better
Devastation, self blame, confused, guilt, powerless Now, still some guilt but mostly optimistic, happy, proud
I was in denial for around 4 months and then I finally took him for a hearing test and they told me he wasn't hearing at all. I still didn't believe the audioligist and he then rand Australian hearing and they confirmed my sons hearing loss. I was feeling helpless and had no idea what I could do for my son. It wasn't until I got in contact with the RIDBC. That I started to feel more confident and the more knowledge I received the better I felt. It's been a long hard road and we are still not at the end. I'm still feel worried when new things are going to happen like my son starting high school next year.
Disappointed, however I was glad he was alive we thought we were going to loose him & he spent significant time in Intensive Care.
Absolute heartbreak. I almost mourned the loss of the child I thought he should have been. I was worried about him growing up and marrying, I was worried that he would be bullied, I worried if I had exposed him to enough speech and auditory experiences before the progression. I spent hours of sleepless nights searching the internet for information only to find very little. He has been aided for a year and a half. He is doing so well at school but there are still times when I feel so guilty. I think every progression makes you realise the loss all over again.
100% acceptance, nothing has changed. My brother had (RIP) severe spine bifida - so knew what ever she faced it was mild in comparassion. Her disability is also not life limiting (compared to other children we personally knew) So was very grateful.
I was completely unaware of the impact this would have on her social and academic worlds; so in essence I was calm. I was told she would 'grow out of it' so was quite calm about it. I feel worried now that I will always have to advocate for her and that she has very little chance of reaching her full potential.
After the screening, then diagnostic I went through a whirlwind of emotions.
Grief and anxiety - which turn to pride and ambition when we realised he can do anything he wants.
Shocked that her hearing was so severe in the low frequency on initial testing, as she was otherwise communicating well in speaking and listening. Overtime, we have learnt of her hearing strengths and weaknesses and work around them or prevent any disadvantages she would otherwise have in being able to hear and understand.
I was already aware she was going to require support in some way, however didn't expect that she would have an actual hearing loss that would require hearing devices. I continue to be concerned as her hearing has declined with each hearing test over the past 15mnths. Each time is like the first time I learnt that she required hearing aids.
Shock, denial, guilt. It slowly changed to content and some guilt from time to time.
Oh - felt sorry get her and myself - means the next few years of her life would be full On with appointments speech therapy and etc
Given family history not surprised. Relieved it was only mild. Relieved my partner wore aids and knew what to do, ask about,etc.
My son was born with cytomegalovirus so when we found out he was also Deaf. My first thought was if he was only Deaf I’d be happy.
Devastated, worried, concerned about his future. Not as worried anymore, still have some concerns however so pleased with what he has achieved despite his hearing loss.
Was overwhelmed by fine following initial conversations.
Sad, anxious. Yes. Feel more optimistic about her future but still worry about her.
Exact feeling was concern for her ‘oh bummer I didn’t want her to have to have all the hassles I’ve had myself’ but at the same time no worries we know what to do and can easily mentor and guide her better than our own (hearing) parents did!
At the time both my husband and I were devastated. We couldn't comprehend how it could be possible since there is no hearing loss on either side of the family. I felt sick with worry for the first 12-18 months of Ella's life. I worried that she'd have difficulties learning and be teased about wearing hearing aids as we were told she would need them. I felt like a failure as a mother. At the time I didn't realise it but looking back I'd say the feelings I was experiencing were similar to when we are grieving. Within a couple of weeks of the diagnosis, Ella also had to be tested for Cystic Fibrosis. This came back negative. In the lead up to both the ABR and the Cystic fibrosis test I would say to myself that if she had to have one thing wrong let it be the hearing loss. The news of the hearing impairment was still very difficult for me to deal with but I was so grateful that our baby didn't have a life threatening condition such as CF. In some small way it was the silver lining. Perhaps this needed to happen so I could realise that things could have been much worse. Over time I have come to accept Ella's hearing impairment and that it doesn't define her. She's reached her speech and language milestones age appropriately to date which has given me confidence that she's going to be ok. So far, she's never been teased about her hearing aids (I still fear there will be a day it happens) and we are hopeful that she'll have the right tools to deal with it if and when it happens. Five years on, I no longer lose sleep about her hearing impairment. I can see that she's just like every other child. Her hearing impairment isn't holding her back in any way whatsoever and my broken heart has healed, almost.
Slightly concerned but we had bigger immediate worries with my daughter needing emergency heart surgery.
Sad but had to move forward. Beautiful baby boy was my reward
Curiosity, something new to learn about, new systems to navigate. Now I'm really happy to have met so many other DHH families and for the learning opportunity it has given my other child.
Oh bugger. School for future? What to do? Worry for her struggles and challenges to come.
At the time- sad, confused, surprised (we had no family history and an easy pregnancy) This then moved to us being overwhelmed with information, appointments and worried about what the future would hold. After Cochlear implants at 5 months old, 5 years of early intervention, speech therapy and auslan tutoring we are now content, happy, proud and excited for the future.
Shock and now it’s just part of our lives
Worried, stressed, guilty still the same
Devastated because I had no idea about deafness and the life he would have and I was grieving for the loss of the child I thought i had.
Oh bugger for future education and battles ahead in relation to all that access. Otherwise ok because they have full foundation language and communication from birth anyway.
Pretty shocked that I hadn't noticed the extent of his hearing loss myself, he was a champion lip reader apparently! I have to say so many people said "I'm sorry" when they found out, but I have never really felt sad about it, because he hadn't really lost anything, he had never had it to begin with so for him this was just his normal. He isn't missing something he's never had, we tend to put our own experience in place about what we would feel like if we had hearing and then lost it. My feelings about it haven't really changed, other than the realisation about how many things he misses and how this affects his daily life.
Concerned, didn't know what to expect. Now just concerned about the future
I was sad/upset and frustrated that there was nothing that could be done to change her hearing loss.
My nurse at the hospital initially told me not to worried many kids get a refer result and end up fine. At her official testing at 2 weeks old we were shocked and not prepared. We had no idea what this meant for our child as we didn’t know any one with a hearing impairment.
Upset for him and guilty that somehow I passed this onto him.
Sad and worried for her. I no longer feel this way, she is thriving and I know will be successful in life
I didn’t feel anything for a long time. I didn’t feel sad, happy or any particular feeling. I was numb and went through the motions of specialist appointments the first year of my son’s life.
Sorrow, guilty we hadn't known sooner, scared
Initially we took it in our stride. He was a premmie and had other health issues so we thought 'well if that's all we walk away with then great'. Later we were pretty upset. Knowing no-one who had been deaf since birth, we had no reference as to what his life would look like. Now we don't envisage his life to be any different to that of our hearing son and it is just part of who he is.
I was concerned as her hearing loss is due to a medical condition she had at 6 months of age I am not concerned now as we have it all sorted
Most definitely devastated and cried lots when we got the news, but quickly turned it around to 'What can we do now?'. We are very grateful for the technology available now!
I was severely upset for him but he is living a pretty normal life now so my upset feeling has gone
I just felt something wasn't quite right but not sure to what extent. Happy I trusted my instincts and asked questions at a check up
On the day of my son's diagnosis I felt very worried about his future. I didn't know any deaf people. I worried about the need to learn Auslan. I cried a lot, but this was also due to he wasn't a great feeder or sleeper, so this added to the stress of the situation. I was still recovering from my c-section, I'd had very little sleep and it was the middle of a cold winter. I think all of these things along with his diagnosis caused a great deal of stress. Now 7 years later, my feelings have completely changed. I have had the opportunity to meet so many positive people in the deaf world. I have been encouraged to learn Auslan. My son has a CI as well as a HA and while his language communication has a mild to moderate delay, we all communicate very well. I embrace my son's hearing loss as a positive as it has completely opened up a how new world and culture and a way of being to me. I still have concerns about his future, however I can see a very bright and exciting future for him.
Shocked as she’d already undergone open heart surgery and been on hospital for months so we were dealing with so much else already. It just seemed so unfair.
Just wanted to get answers on what was wrong and get her fitted to help her better. Husband took a while (6mths) to come around to the fact that she needed hearing aids to help her with hearing. I believe he was worried about how she would be judged and hadn’t realized how much she was missing out not hearing properly. My daughter has been accepted very well within her community and is doing extremely well for her age. She hasn’t experienced any judgement so far.
Overwhelmed had no idea where to get help. Now frustrated at having to explain her behavior.
We were devastated as it was a complete shock and we had no family history or hearing loss. We didn’t know what this would mean for our daughter, whether she would be able to hear us, talk to us, how she would learn anything. We were in the dark about our options initially. Those feelings have definitely changed as she was implanted before her first birthday and after intensive early intervention, she is now reading at a grade above her level, has excellent speech and language and is very intelligent. She has a great group of friends who love her for her, and don’t even notice that she has cochleae implants. I don’t worry about the things I used to, but I know these things may change as she gets older and will eventually go to high school, participate in extra-curricula activities and then seek employment. Some of the fears may return as I worry about rejection, discrimination and bullying.
Fear and anxiety about how to raise a deaf child and her future prospects. I now feel very blessed for the different perspective she has given our family, but still worry about her development and future.
Like the whole world had changed, so much sadness for the unknown and all that our perfect newborn baby already had limits on his life at three weeks of age. Questioning what I had done to cause this and desperately wanting to know how to fix it. Overtime I still feel my above thoughts are valid, but I am so proud of all that my son has worked hard to achieve ( especially when most of this things come naturally to his peers). The unknown is still daunting.
I wasn't too worried because I am always optimistic about things, I just assumed everything would be okay and we would work it out. My feelings haven't changed too much over time. I am happy that things have worked out better than i could have expected, but i was always confident that things would work out well and I would be able to cope with it. 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, everyone has issues.
Guilty, overwhelmed, confused, worried, stressee, upset, sad
I was in shock. I was grieving for the life I had dreamed for my son. My life and my whole families life changed that day. I was so upset at the time I was told and really can’t remember much of what happened after I was told. I felt like I was ‘out of my body’ observing what was happening. I couldn’t think straight. I was upset for months and couldn’t talk about it without crying. I was going through the motions of being a parent to both kids, taking my son to appointments, learning everything new along the way. As the years have gone on, it’s got so much easier. I look back in the first few years as the hardest. Those first few years are so uncertain and the grief keeps coming back at times. I think I was depressed as well, I started to look at life differently and didn’t feel as carefree, didn’t find joy as easily. I think after the first 2-3 years everything was easier. I had accepted our life, I felt more confident about his future, I was proud of my son and wouldn’t change his hearing loss but in the early days I would have given anything for him to have normal hearing.
Despair, concern about the unknown. As she has gotten older I still worry about her future and whether she will be able to get a job etc
Worried then Less worried now He is doing great
I felt grief and was completely overwhelmed. It took a long time for me to fully grieve my son’s hearing loss because I was so incredibly busy trying to provide him with all of the language he needed (both in spoken English and Auslan). Now I embrace him and his beautiful world. I have learned to let go of my expectations of him and just follow his lead.
Total disbelief,I felt numb and shocked and was in tears. I thought it would have been better if as her mother I was the one to have it rather than my daughter. There's also a feelings of being loss and not knowing what the future holds. Also since she passed her newborn hearing screen tests and all the other tests until the age of 5 there's was a guilt feeling about the fact that how could we have missed it. It also took me back to my pregnancy and thinking did I do anything wrong to compromise my daughter's hearing. The feeling of guilt was enormous. As parents we wanted answers and something to place the blame on. Now a few years have gone since the initial results and yes there's more acceptance of her hearing loss but my husband is still in denial at times. Since it's unilateral hearing loss she can still hear well in her good ear so my husband thinks she was misdiagnosed eventhough she's done multiple hearing tests since, all showing hearing loss. There's also fear whether or not it will be progressive or not and the uncertainty of the future. My daughter also has so many questions we do not have answers for; such as how come I'm the only one with hearing loss. She's currently seeking counselling to accept her condition.
I was sceptical and thought the tests were wrong
I felt absolutely awful that she had been struggling so much until her diagnosis and I didn't realise. I don't feel as bad about it now because she is now receiving the support and therapies that she needs.
At first, heartbroken, overwhelmed, grief, unknowledgeable. But over time those feelings have gone. I now feel competent, knowledgeable, capable.
First 7-10 days of formal diagnosis of permanent loss and hearing aids being required was devastating for me. My perfect little darling wasnt quite as perfect as she previously was. I mourned greatly. After that it became my mission to learn everything I could, in order to help her.
I was sad and upset, but mostly worried about what the future would hold for him and how his life would be affected by having to wear hearing aids. I also worried a lot about him losing the rest of his hearing. Over time I’ve realised that his hearing loss doesn’t hold him back from anything, although I still worry about his future career prospects as I am sure there will be some limitations due to his hearing. I still worry his hearing will get worse but I now accept this is something I have no control over.
I thought that a cochlear (which he isn’t eligible for) would fix everything. How things have changed! My son has been completely different from what the experts expected, and really they weren’t prepared. throughout parenting I really moved from trying to fix through parenting through attachment. It has really transformed my relationship and idea of parenting. Right now all I want to do is develop my relationship with my son and will use whatever means I can to communicate with him. I wish I could tell new mum me that!
Oh no all I could think about was all the medical appointments that we have to go thro like I did
Scared Devastated Denial Worried Sad Disappointed These feelings still occur from time to time in relation to the hearing loss, although not as intense
Shock sadness scared. They thought he also had cerebral palsy so this was considered an additional sign of that.
His hearing loss was of minor concern due to other more pressing life threatening concerns at birth. It did not worry me.
Shock The unknown Grief and lots of it Energy focussed on future Concerns for reaching best outcomes due to lack of access and other issues Proud parent, amazed everyday by child in many different areas
Concerned. This still fluctuates regularly from concern/anxiety to acceptance and advocacy
Grief at first - future, peers, accessibility Turned into optimistic and motivated
I was initially quiet upset with the news but as I learned more and educated myself I am mostly content
Worried as it was hard to find services and there was no information that wasn’t bias
Determined, focused & frustrated with the so called experts who wouldn’t listen (they eventually apologised) Frustration is still there just aimed at the school. Still determined & focused just mixed with exhaustion & hope
I was sad, confused, worried and felt guilty that I had done something to cause it As the years have past I am aware of her hearing loss and can be very protective of her but I am optimistic and proud of her She doesn’t let it hold her back at all
I was shocked when it was confirmed as we had her tested, then retested, on the advice of our ENT. Distress, disbelief, sadness, fear, grief. Now I still worry for her, there is the fear it will get worse, but I accept it and feel much more positive.
Heartbroken, despair, uncertainty, terrified. They’ve changed immensely, it’s actually been a wonderful journey full of ups, downs and hard work but it’s made us appreciate our life and thankful for modern technology
Devastation and despair, guilt , and worried about his future. Lots of tears and uncertainty. Now Don’t give it a moments thought to be honest ! His hearing loss is no longer an issue whatsoever beyond a slight inconvenience from time to time
Grief and worry. Now pride and mainly optimism.
Absolutely devastated for her. Worried about how her life would be. Would she ever talk properly, do the things she loves, play sport. Would she be teased at school. Upset that she couldn’t hear us properly & wondered for how long it had been this way. I took a while to accept it.
I wasn’t too overwhelmed as we had a lot of problems throughout my pregnancy and my sons early delivery. I actually feel that it was more overwhelming and stressful when my son started school and he wasn’t provided with the support he needed
Very upset, worried about future, family stresses - changed as we were provided support and information
I was overwhelmed at the time as time has got by we are more relaxed as we have great support from friends in the deaf community still overwhelmed at times whit all the appointments
I felt that I wanted to get her as much help as needed. I also felt guilty as she was around loud music, from her father's band, from a very early age.
Thinking was temporary but it hasn’t improved

Tell me exactly what happened when you learned of your child's diagnosis. Where were you, who else was there, what were you thinking and feeling at that moment?
We knew she was clearly responding to most sound, not hugely concerned.
I was with my husband and the audiologist at the hospital who wasn’t very nice in telling us the news. To him he was just doing his job, to me being a first time mum I wasn’t sure why I was in the hospital or why my son needed further testing, I needed someone more supportive as I was new to the whole “deaf” world
It was just myself and my son at the audiologists, sitting in a small room. He had finished the hearing test and she said yes he has some hearing loss. I was still thinking it was probably just glue ear but then she said it was permanent which was a bit of a shock. The point where it really hit home just how bad his hearing was, was when the audiologist put a piece of paper over her mouth and told him to repeat what she said "cupcake" - he just looked at her because he hadn't been able to work out what she was saying because he couldn't lip read her - I teared up at the time and I am tearing up right now as I recall this! She said a few more words "banana" and something else and he couldn't hear any of them well enough to say them back. She gave us a pamphlet for Australian hearing and told me to ring and make an appointment. I felt pretty uninformed and not really sure what the next steps would be to be honest and I did a lot of research when we got home and over the next few weeks.
I was at the audiologists office, very mundane and sombre atmosphere. Test was conducted at a centre where it is known that they are very anti-Auslan and are strong advocates for AVT. Quick to usher me in and out of waiting room / testing etc. Terminology used is very negative - failed, did not succeed, did not achieve etc. They assumed that I was deaf myself, that they did not need to give me information. I was left to my own means. With this kind of environment, I felt that I could not soak in the results and discuss. Therefore leading me to feel despair and grief.
First it was at newborn hearing screening in the hospital. I don’t remember the conversation but I remember going away feeling like he probably doesn’t have a hearing loss- that it was probably just fluid and I didn’t need to be worried. Second was at the hospital audiology clinic. I was with my husband. We went in specifically for an audiology appt. I felt nervous but more because I was concerned about getting him to settle and sleep for the ABR. The audiologist was nice and assured us he would be fine with early intervention and access to good technology. We went away feeling optimistic for his future. I just had so many questions that felt hard to answer. Mainly about what the next steps were and what we had to do.
The nurse showed us a lot of sympathy and pity then told us that my son had failed his test, that it was okay- we would have another opportunity to see if he passed the next. We were in the hospital, with my husband and sister. I wasn’t bothered, only a little perplexed at the pity.
I was a Westmead childrens hospital in the deafness centre. She had just completed her testing at one month, and I was told she was profoundly deaf. I was with my husband and the audiologist. I cried and could not stop. I just wanted her to be able to have the same experiences as my other children.
In hospital. The nurse gave the information, but nobody else was present. I was feeling sad.
He was 3 years old, I felt relieved as I battled the system repeatedly to get the diagnosis. We attend children’s hospital 2500km home home and any family. I have my hearing impaired son and his younger baby brother. his ENT that changed every appointment always said next time “we will see if it is still the same loss” it took a health system fight to get a senior ent and a repeat visit to him, it was relief. Then lots to of questions, that’s are being handballed still years later
I was at the audiologists with my son. I was trying to keep calm and not show an emotional response in front of my son. I had so many thoughts racing through my mind that were mainly focussed on concern for the cause of his hearing loss.
Audiology & ENT, my partner her dad Sad, guilty, worried, concerned
Australian hearing it was my son and i and the audiologist it didnt sink in at all wasnt to i called the next day that i understood anything
The older child was sent to child and youth health for confirmation of the hearing loss after failing the newborn hearing screening. This test was done in front of a group of students. It was very upsetting to have so many people watching when the diagnosis was confirmed.
At Taralye, with my husband. At least we know knew what it was and we wanted to get things moving. One step after the other.
I was in an audiology booth with him and an audiologist who told me it was profound and permanent loss. Due to the sedden onset I was very fearful he may have had some type of serious illness that caused it ie. Tumor. Fear, stress in large doses is what I felt. Then sadness for his future.
We were told she failed the hearing test. We (my husbandand I) were sent downstairs of the hospital to the audiologist. He tested her. We could see she didn't respond to anything. The Audiologist told us "it's not the end of world but it's certainly not what you want." He told us she had a profound hearing loss and we went to the Ronald McDonald room where we cries and tried to process what we were just told. We rang family members and waited fofor the next steps.
I was by myself with my child At Macquarie uni, I was relieved initially as someone finally listened to me when I said things weren’t right ..... but now that I know more, it’s just continual worry and guilt
Hospital with husband. Devastated, emotional, angry, protective
I was at an audiooligist with my husband at the time. I felt complete denial. I felt the audioligist had no idea idea what he was talking about. Until he sent us to Australian hearing and they confirmed it and I felt devastated, scared and lost.
The first time I was told he was still in Special care nursery & they wanted to test again,so I didn't think much then. The second time we had made it home & I remember feeling shocked & was remember thinking that deaf is easier to deal with then him being dead ora lot of other disabilities.
I was with my son and husband at the audiology department of the local hospital. He had his test and we learnt of the loss after my suspicions. At that stage he did not need aids. I was effected more when it had progressed to the level of needing aids. We were then referred to an ENT who started talking about cochlear implants even though we were nowhere near that level. I found that stage of diagnosis very very difficult.
Post birth, with my husband. I was far more concerned that she looked like Her chubby big brother, thankfully she slimed down & is gorgeous.
Originally it was just hearing test after hearing test that showed loss. An auduologist then advocated to an ent for a referral for aids. I truly don't believe I have ever received a diagnosis????
At the time of diagnosis we were at Taralee in Blackburn. There was the DR my Husband, myself & a lovely lady Julie Gillespie (unsure on spelling) who was part of an early intervention program, she had rang me after the early screening to see how I was doing and she organised the test to be at Taralee because it would have been a couple of months later otherwise. My initial reaction was strange because I had already decided the outcome after the screening. I just wanted to “fix it” at first,
Shock and grief. We didn’t believe it until the final irrefutable test. I was devastated and my husband distant.
At an ENT consultation. Present we’re my husband and I and our newly diagnosed daughter. As she was otherwise a healthy child with no family history, it was all about trying to find the cause of the deafness. Feelings were - surreal, but calm as a range of tests were conducted to find cause; uncertainty regarding how deafness will impact her future childhood and adulthood.
I contacted Australian Hearing to book a test and I was queried why I didn't have a doctor's referral, continuously told how much it would cost and if I was sure I still wanted her tested. She had been displaying many challenging behaviours that day and I insisted she be tested. Never having experienced a hearing test neither my daughter or I knew what to expect. I was surprised when the audiologist suggested I come back for a second test and reassured me perhaps it was because it was a new experience for her but her results suggested we should return. They then said no payment was required and the realisation that she may actually have a loss became a real thought for me. Her follow up test was two weeks later and the results were confirmed. I was really calm intially. We took impressions, picked and ordered hearing aids, and was given some information to take back to school as well as advised to make further appointments to try assess reasons for hearing loss and approval for hearing aids. It was myself, my daughter and the audiologist present. I felt upset after dropping her back at school for about an hour. Ava was excited to be receiving hearing aids.
At the audiologist and our ENT. I was with my kids and husband. Total meltdown and thought my son will never be able to hear or speak.yes
My parents told me as we were using Auslan at home and I didn’t pick it up - shocked of course but the. I warmed up to it knowing I have already given her the best start in life with learning Auslan as her first language
At the community centre with son and they referred me to Hearing Australia. Relieved that there had finally been a diagnosis. And not surprised given family history (partner, one of his sisters, father and Aunty, grandfather all have hearing loss).
My husband and I knew by the silence in the room that there was something not right with our son. I remember feeling a numbness for weeks afterward. Waking from sleeping feeling disappointed it wasn’t a dream.
We were at Telethon Speech and Hearing in WA. My husband was there too with the audiologist and director at the time. Very emotional, lots of crying by me. Frightened and thinking he would speak differently and be teased at school.
I had been single a week had baby and 3 year old son was in Melbourne uni hearing test place. The young girl said to me it’s ok he can play computer games. At that point I could have yelled at her that he would be so much more than that and that she was unbelievably ignorant. I didn’t though and calmly took my two babies for the two hour drive home
I was with my daughter getting her hearing tested. Feeling overwhelmed.
Audiologist ‘yep you’re right she’s consistently missing these sounds now, it’s not just congestion, let’s set her up for an appointment for hearing aids’ Me thinking - hold on a minute is that really necessary? Haha
We had to take Ella To Sydney Children's Hospital for the ABR test. My husband and I were both there. Soon after the test we were given the result by the audiologist who administered the ABR and I think one other audiologist also came into the room. I felt helpless and shocked. I couldn't believe what I was hearing. The overarching feeling was a deep sense of sadness. Part of me thought the test result was inaccurate and that we'd be told at some point down the track that Ella's hearing was completely normal.
We were at the mater mothers hospital I was with my husband and we were fascinated that a machine that is put on a baby’s head could diagnose hearing loss. In this list of things we were worried about this was not up there. We were told hearing aids would fix everything.
We were at the office doing a repeat of the newborn screen when he failed again. Got given a heap of information and overwhelmed
Not sure of the specifics. But the people who did the testing loved to put the fear of god into everyone who didn't get a conclusive test at the initial screenings, presumably with the expectation this would encourage us to come back.
Midwife conducted Newborn Hearing Screening while we were in the hospital, my son 'didn't pass' so we went back 2 weeks later for another test which he still 'didn't pass, after which we were referred to Specialist at a different hospital. Note they never said he had 'failed'.
Immediate feel sad. Was only me there for results. Angry medical people push straight for cochleae implant surgery and tell me must hearing aids fitted ASAP and start work hard for her speaking and lystening. Tell me better to use less Auslan and more speaking focus. Lucky I ignore and parent her nt way. Lots of auslan for language base. More important.
During the SWISH test I was alone with my newborn in hospital. We were told the test was not always accurate and it could be a fluid issue so not to worry. We were given a referral to Westmead Children’s Hospital. At the hospital I was with my Fiancé when we received the formal diagnosis. We were sad, shocked and overwhelmed. We were given information, a list of appointments and contacts and introduced to a social worker.
At Monash medical centre , I was there on my own with my son , it was just a shock and took a while to sink in
I was at the Hearing centre when the audiologist gave me the results. She did not leave me in the room to compose myself but instead led me to the outside waiting room where I fell apart in front of the other clients. I was alone with my son and could not stop crying thinking about the life he would possibly lead.
Just me and kids at appt. Feel like ‘yep that’s what I thought. I was right. They deaf. Bit sad too for challenges they got ahead of them with access and education.
I went to get a hearing test, after she did the test and Audiogram she wasn't really saying much and didn't explain very much at all - other than yes he has a hearing loss, and it's permanent. It wasn't until she sat about a metre from him facing him and put a piece of paper over her mouth and told him to repeat what she said. "Cupcake" - he had no idea what she said and just shrugged, "Banana" - another shrug. That was the exact moment that the realisation hit me that he was actually pretty deaf and had been lip reading a lot.
In hospital a day after birth with the New born screening I think I was by myself as partner was at work was thinking it could be wrong
At Sydney Children’s, with my husband and mum. We all cried together in a private little waiting room....
My ex husband was there, we had already been through a lot so I was upset and just going through the motions and trying to process everything
My husband myself, our daughter, the audiologist and soon after a social worker who was great she asked if we wanted more information now or to let it settle in. I immediately wanted to know as much as I could what this meant for her future if she would ever hear my voice, I felt heart broken, I thought she would have no future.
It was confirmed at Hearing Australia, with our audiologists Lisa. It was Tyler and I that attended this appointment. I remember feeling lost, overwhelmed and my heart sank for my little man
At the Children’s Hospital. I was alone with my baby as my husband was with our older children. I was quite devastated and emotional, even having an older child ( now 15) with hearing loss also
I found out at 2 days old when the hospital performed the newborn screening test for hearing loss. I was by myself, the woman who performed the test was apologetic and kept saying “I’m sorry, I’m sure it’s just fluid in his ears. There’s nothing to worry about”. But I wasn’t worried, I didn’t understand why everybody looked at me so sadly.
At the hospital with audiologist. Just me, my daughter and the audiologist. I was very upset.
He failed newborn screening twice in the NICU/special care nursery. We weren't given any support or guidance just told it would require further testing. We got a formal diagnosis after an ABR with an ENT specialist. I was alone with my son and the ENT. We had already resigned ourselves to the diagnosis so it was just a matter of knowing to what degree. At that moment I was more pragmatic.
Upset as we were at the hospital and due to bacterial meningitis and seizures resulted in my daughter ma hearing impairment my partner and son was with me
My husband and I had the hearing test done at our local Audiologists. We knew something wasn't right when we saw 'flat' lines on the computer screen, but were very optimistic as to what we could do next.
I was in hospital 3 weeks post birth, I was on my own with just the audiologist explaining that he was profoundly deaf in his left ear, my heart sank as I was worried about his future and what was to come I cried and cried
We were seeing the ENT for a follow up appointment, my hoh daughter was there and the ENT, I was shocked and felt guilty that I hadn't picked it up sooner, then came the recommendation that she needs hearing aids and I was devastated for her
My husband, my son and I were present when we learned of my son's hearing loss diagnosis. It was a very strange day as we went in to the appointment thinking it was just a routine "tick a box" appointment and would be done a dusted very quickly. I was very wrong. That day completely changed my world. In my mind, the very lovely audiologist was telling me that my perfect baby was not so perfect. My husband took the diagnosis better than I did. He said it could be far worse. The audiologist talked about the next steps, such as visiting Australian Hearing and the Eye and Ear Hosp to see an ENT as well as the Cochlear Implant Clinic. We were given lots of information which was very helpful at the time. Especially other families stories about their child's diagnosis and life now. Telling family and friends about my son's diagnosis was difficult. There was a lot of disbelief.They mostly would say things like how could they tell on such a young baby, and recalled stories about babies with hearing loss being fixed by chiropractors or ear candling. It was a very confusing time, however we remained focused and guided by hearing team professionals.
We were in RCH in Melbourne on the cardiac ward, I was probably there with my husband, just shocked that this was a whole new diagnosis we had to deal with on top of her serious heart condition which she’d already had 3 open heart surgeries in 5 months. She also had a feeding tube, severe reflux so we had our hands full already.
At the ENT office. Myself, husband and both daughters. I was feeling nervous but a lot made sense once we found out. Her diagnosis was unusual so it was still a lot of trial after the initial diagnosis but at least we had somewhere to go forward from.
I was on my own with my 2 week old, I was so scared and overwhelmed I then had a 45 minute drive to collect my other daughter from school. The staff at the school were so helpful and pointed me in the right direction.
I was in the waiting room of the Audiology department of John Hunter Hospital. I didn’t got into the test as I didn’t want to see the results on the screen. It took a lot longer than I expected because she kept waking up- she had to be asleep- but they eventually completed one side and my husband and the audiologist came out to tell me. The audiologist was quite blunt and I burst into tears because I was so upset. I kept looking at her and thinking how our beautiful daughter could be deaf. That quickly turned to anxiety because I had to feed, change her and get her back to sleep to finish the test on the other side so we could go home. Our family kept trying to call is to find out how it went, but we just sent them a text to tell them the results and that we didn’t want to talk to anyone. We then both cried all the way home for 1:20.
I was at Westmead children’s hospital following the ABR test if my daughter. The audiologist who told me the news had very limited English skills. It was a long day, I was on my own with our beautiful 6 week baby, and felt very overwhelmed and disbelieving and uncertain. I cried.
At the hearing unit at Randwick Childrens hospital with the audiologist and my husband. The audiologist was lovely, very friendly and upbeat. I remember when she left the room to compile the results looking at my husband and saying ‘it’s fine, his hearing is fine I can read her body language. When she came back and confirmed there was a loss with both ears, not just his right ear it was seriously like she started talking under water, I could see everything that was happening and been said but I was in too much shock to process it. I was also so aware I was holding my sleeping newborn, I had this massive surge of protection come over me. My husband offered to take him but there was no way I was handling him to anyone.
My husband was away 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 my husband 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, we 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.
We were at the local child community health centre where an audiologist had come to do more testing on our son. My partner and 2 year old daughter were with me. It had to be quiet in the room, so my partner took our daughter out to play with her in the waiting room. When the audiologist told me I didn’t believe her. I think I questioned her and she tried one more test but confirmed the news again. I started crying. I couldn’t talk. I think my questions were related to how can we fix this, what can be done? I forget what the audiologist said really, I could tell she felt sad for me too. She desperately wanted to tell me the test was wrong but she kept trying and would get the same results. I remember she rang out to the reception to ask them to send my partner in to support me. When he came in, He didn’t know what was happening but could tell I was very upset. I had to leave the room as I got so hot, the heating was on and I felt that the room was so hot and stuffy I couldn’t breathe. I excused myself to get fresh air and I left. I went out to the waiting room where I found my daughter playing toys and I tried to join in playing with her but my mind was elsewhere, I was in shock. I couldn’t concentrate on what was going on in front of me. I felt so uncertain about my sons future. How would he cope, how would he hear? Would he get the same opportunities that any other child would? Why is?
It was in the delivery suite. I had my husband, the midwife and the obstetrician. I just felt Myself crash down from the elation of labour and felt everything spin out as different doctors came in to see her (my daughter has microtia so the doctors came to see her to start checking if she had any other diagnoses)
At audiologist at SCH randwick. Son and myself. Surprised and concerned about what it meant.
My husband and I were in a tiny dark room, with no windows when we were told by a pediatric audiologist that our son was profoundly deaf bilaterally. There were no other people present. I was completely heart broken. Being a nurse, who had, on many occasions told people incredibly confronting news, I empathized with the audiologist about how hard it must be for her to have to tell parents news like we had received. I guess it was my way of detaching from the situation. I didn’t feel like I could let myself completely “feel it” until about 5 years later.
I got a call from the school nurse saying my daughter had a health assessment and they found out her hearing in both ears were not good. I was alone at home and in complete disbelief, I thought this couldn't be true as we haven't noticed any signs before. She responds well and yes at times she wouldn't answer when we called her but I thought that was her neing distracted or selectively ignoring me. The nurse said it's better to have her assessed by a specialist. I booked an appointment with my gp and then went on to do more tests with specialists. My husband wasn't concerned as he said they've got it wrong. We both thought at the time it was her ears infection that may have caused fluid build up and compromised her hearing.
Hospital hearing test area. Lady suggested visiting Australian Hearing
Her new speech therapist had requested an up to date hearing assessment so we were at Australian Hearing having that done. I was in the room with my daughter during the assessment and that was when I realised that there may be a problem. I was able to hear quite a few sounds that she wasn't responding to. The audiologist then spoke with me about the extent of her hearing loss. I was blindsided.
Audiology department, alone. I was incredibly shocked and sad.
As above. At the ENT office, i thought the doctor must be mistaken and her hearing loss could be treated with grommets. Denial, disbelief
Learning of our son’s diagnosis was more of a gradual process than a defining moment. He had to go through a series of hearing tests before the eventual diagnosis was made and I think that each time I was starting to realise a little more than he had a problem. The day we were told he needed hearing aids, it was just myself and my son at Australian Hearing. When I got home I became upset, it was hard to accept.
I already suspected, but I burst into tears. It was at the children’s hospital in Randwick, the head audiologist was there along with my husband. I was already emotional, but I never went into denial. I was lucky with that,
Shocked as did not expect it as I didn’t know it was genetic on my side - my mum found out as she doesn’t use Auslan so she was looking after her grand daughter and talking to her thinking she’s not responding to simple commands and not looking at her when she calls her name
I was absolutely gutted. My daughter was born via emergency C section and had meconium aspirate. She was given antibiotics , Gentamicin which I believe has contributed to her hearing loss. She was observed to have seizures at 10 hours of age and also had slight jaundice. She had an MRI on her brain at 3 days old which showed bruising. At 5 days she was tested for hearing and her right ear came back as refer. Which then entailed more intense screening from audiology. I was devastated and thought surely not. Only old people go deaf! I never thought of the varying degrees of hearing loss in people before that moment. My husband was with me at the time. I honestly thought further testing would show perfect hearing, that it was a mistake.
At new born screening test and was by myself
With husband at audiology lab. Both very shocked. Still didn’t believe it. Drove home in silence for a while. Then started to talk
Initial diagnosis was at prenatal screening and picked up only the cleft lip. It was a horribly depressing, awkward and extremely uncomfortable meeting with the Dr makimg out like it was the worst diagnosis ever. I felt as though I was the one encouraging the Dr that everything woukd be ok. Actual syndrome diagnosis was via the Dr, just after birth and as previously mentioned I was not concerned about tge hearing loss aspect as there were higher priorities at the time.
It was bizarre - the nurse who screened my son as part of the SWISH program felt nervous and was worried to tell me that my son has a referral. I was by myself. I told the nurse, that’s great - no worries. I have suspected he may be deaf.
I never knew walking into hearing australia my child would be diognosed that day. On entry I saw a mother and child with hearing aids. Child was happy playing and mother was calm and content. I never realised that would be me on exit. Due to not realising diognoses would occur, I took no support person. When I arrived to the car my husband called me and asked how appointment went. A few times I tried changing the conversation but that did not work. I had to tell my husband his daughter was deaf over the phone. He had no support either. I drove home with my daughter totally at a loss and my husband spent the next 2 hours walking in circles at a park next to his work. We had no family around us and they did not understand explaining everything will be ok and it will come back.
I was in a hearing test with my daughter and the audiologist. I didn’t really process until I got home. Then I cried
Hostile environment - all because I was using Auslan and had Auslan interpreter at a centre where it is known to be exclusively AVT and they were quick to shepherd me off before any other parents / children saw us. Never gave us any info - they assumed I knew. Felt demoralised, inferior, that my child would be a failure.
She was my first baby. My husband and I were at the children’s hospital in west mead. We certainly were not expecting a diagnosis that day. In that moment I mostly felt shock.
In the hospital by myself. I had worked out she couldn’t hear and wasn’t a suprise. I wanted to know what I need to do to get her support. It was overwhelming all the jargon they say. Scary they couldn’t answer what was available for giving her a language.
Royal institute for the deaf and blind. My husband and I were there and we both felt extremely confused. And could not understand how this could happen to our precious baby.
Relief that I was right & pride that I didn’t listen to the experts. I was alone as hubby was working away at the time.
Newborn screening- at the hospital on my own with the lady doing the screening - concerned but hoping it wasn’t permanent Once we had completed several tests at the hospital with audiologists it was confirmed that it was a permanent loss - at the hospital with my husband and hospital audiologist I cried when they told me I was worried about how it would affect her life/future
I was with my daughter at the child and youth health hearing assessment centre in the city of Adelaide. We left the assessment centre, got in the car, then I called my husband and cried. I was sad, in disbelief, and worried for her future.
I was at Pmh (local children’s hospital at the time) we had failed the newborn hearing screen and were referred there. I wasn’t the least bit concerned as who expects their child to be deaf? My other two girls at that time we healthy and happy. I was on my own, and when they said the news I was in shock. I cried and sobbed to the audiologist. I wanted answers straight away which of course she couldn’t provide (not her fault, obviously we needed more testing) it was the most difficult time of my life
Monash medical centre audiology department with an Asian audiologist whose English wasn’t the best. My husband and I were both present with the baby. She did a test and then turned to us and at said the test had shown that the baby did have a hearing loss. She then did another test to determine if it was reversible or permanent. After some time she confirmed that indeed his loss was permanent in nature and that he would not develop language without hearing aids. We were stunned and devastated beyond belief. There were tears. I remember asking her if he would learn to talk even with hearing equipment - and she said she couldn’t be certain as some children simply don’t acquire language at all. She asked us to return in a week to repeat the tests and ascertain with certainty the level of his hearing loss which we did. We spent the next few days grieving, got family in to help support us with our other two kids. We Did loads of research and eventually stopped all the blaming and worrying about his future and just got on with it. My husband and I resolved to do whatever was necessary to ensure our son would achieve his full potential - and that’s what he has done so far! It has definitely been a journey - but a rewarding one nonetheless
Myself and the nurse doing the hearing test. I just remember being shocked I went to the bathroom and cried my eyes out
At the specialist with my son and husband. Shock and disbelief.
My husband & I were there with Chloe. I cried & found it hard to accept. I wished she could hear normally. I worried for her being different & worried for the road ahead with speech therapy etc but was determined to make it work & help her as much as we can.
At PMH, he just had first operation at 11months for grommets. Whilst under they did abr testing. Audiologist came into see us and said he had a mild-moderate hearing loss. Frustrated because hearing loss was never mentioned at any appointment at pmh, was always, ‘glue ear’, ‘follow up appt’
I was there by myself with my twins. We were sent to the audiologist at John hunter hospital and my son was diagnosed there. The audiologist was very negative about my sons Deafness even stating that his type of hearing loss would limit him into the future and that everything looked really dismal for his education, language etc We were all numb but felt like we needed to get a plan in place.
I was on my own. In hospital by an inexperienced staff member undergoing the swish test. As we had family history of hearing loss I knew it wasn't 'a mistake or fluid on the ears' as is often advised by the person administering the test. It was the third day after giving birth. I felt the joy of having my baby was taken away by this knowledge and spoiled the lovely bubble i had been experiencing with her and her father at the time. Conversations with family then revolved around this diagnosis instead of having my child.
I was overwhelmed at the time and was by myself but when it sunk in I knew I could get through it with my husband
I requested a hearing test for my daughter due to her speech delays. At the time, I was worried how it would affect her life but as she is moderately deaf in 1 ear, i was assured there wouldn't be much issue.
Had a hearing test then was diagnosed with a hearing loss after three more hearing test coming to a conclusion it maybe permanent as he had normal hearing until last year even though has deaf parents.

Parents sometimes wonder or have ideas about why they have a child with special needs. Do you have anything like that that you wonder about?
Both parents of our child have profound hearing loss, but no family history. Do wonder why, but it's not really something that we have spent much time mulling over.
Not at the moment, it may have crossed my mind earlier when my son was a newborn. I think I did go through post natal depression for me finding answers to help my son was the only thing that made me feel better.
No. It's just the genetic lottery isn't it. Why do some kids have blue eyes? Brown hair? Same thing with hearing loss.
Very fortunate to have children, that I can pass on my legacy. Deaf culture & sign language - they are the future of the community. 3rd generation deaf, defying today’s science.
No I think these things just happen at random. A small part of me thinks maybe I was “meant” to have him as he is but who knows? To be honest, if anyone was going to have a child with hearing loss, I’m so happy it’s me.
I am blessed to have him. I worked in disabilities for ten years prior to having him, he was given to a parent that will fight every system to get the best for him. He has changed my life in the best way possible and my career
No , I just accept that is the “luck of the draw”. I do wonder about the genetics side of things and are currently in the process of having this investigated.
Yes she was given to us for a reason. But I blame medication I took prior to falling pregnant.
All the time i really dont understand what happened all i know is that i have to keep going
Sometimes. Wonder if it was just genetic or due to exposure to radiation at work.
Sometimes, but we have heaps of support so we take each day as we go.
No. I feel he was just unlucky. But perhaps he will become a stronger, empathetic person because of it.
For the first few years I had a lot of self guilt, wondering why this happened. What could I have done to prevent it. 9 years on it's a part of who our daughter is and we are proud of her and what she has achieved. Every child has struggles in life at some stage. We just had to deal with her disability / hurdle immediatley.
Yes, I wonder how this occurred, we have no answers genetic testing has been inconclusive
Always but everyone tells us it’s because we can give them everything they need.
I have no idea why it happened. But it has changed my life, my sons life and my families life.
No, I wouldn't want him any other way now
Yes absolutely. I adore my son but often wonder why everything seems so hard for us. Both my husband and I lost a parent young, my mother is still alive but very unwell. We had miscarriages and then I nearly died during childbirth, resulting in an emergency hysterectomy to save my life. We went into a lot of debt to then be blessed with my daughter via surrogacy. We have been sued by tradesmen who fell over repairing our house etc etc... so yes, sometimes we wonder why everything is so hard.
No, but sometimes I wonder what it would be like to not have to worry about loosing a device or getting it wet!
I did initially worry that I’d done something wrong that caused his loss. Now I feel privileged to have him, and that he is privileged to have me.
I would like to know the cause of her continued hearing loss. However would like to know more when it will stabilise to be able to reassure my child as it is a huge stress for her more so than anyone else.
Yes always think that my choices resulted in it
The hearing loss is the least of the issues we deal with, and doesn’t affect learning anywhere near as much as everything else. Not a question of why ... that’s not a questi9n I think about at all.
I am a strong, capable and caring mother. This is my biggest challenge in life. Nothing will ever stop me from supporting and advocating for my son.
I wonder why she has hearing loss a we haven’t been able to find an underlying cause as yet.
No it’s pretty clear. Parents both HI and must be a gene that doesn’t show up on the usual gene testing.
Initially I wondered and at times felt it was some kind of punishment, although I could never work out for what I was being punished. Anytime I mentioned this to my husband he would shake his head and tell me not to be so ridiculous. It wasn't until Ella was about 8 months old that we found out the reason for her hearing impairment. Genetics was the answer. From that point I just accepted it for what it was. It came down to statistics. However, I do feel like Ella is lucky to have such proactive parents who've given her every opportunity to prevent her hearing impairment from impacting negatively upon her speech and language development. I am a teacher and have developed a strong interest in speech and language development over the past few years. Maybe part of the reason I have a child with special needs was to help lead me to what I've become passionate about.
Nope, we are blessed with an incredible young man
My son was donor conceived. In preparation for this I attended 2x mandatory counselling sessions during which disability was discussed. Sometimes I worry that I've made life difficult for my son... what if I chose a different donor or was inseminated on a different cycle?
No. She’s not special needs. She’s deaf, that’s all
No. We wouldn’t change him for the world. We were lucky that genetic testing gave us the answers we needed. I think it’s harder for those who have an unconfirmed reason for their child’s hearing loss.
No , we have no idea why , he’s completely normal in all other ways but his hearing
Yes, I have always wanted to know what caused the deafness, maybe so as to relieve myself of any guilt for causing the deafness if that was the case.
No. It probably genetics in family. Doesn’t matter why.
No, it's just a birth defect and part of the genetic lottery and forming tiny humans. Things can go wrong.
Yes how and why did I do something wrong during pregnancy
I always liked to believe we as parents are chosen for a reason because we are strong when we didn’t even realise it. I’m not religious at all. It’s all just ment to be.
I know my child has taught me a lot and I feel she was a blessing to me because we need each other
No, as soon as we had the diagnosis and started with Australian Hearing (6 weeks) all of our worries went away. At first I had why me moments but it was more a why her, why did she get dealt this card - now it is just a part of who she is and I wouldn’t change a thing when is comes to her hearing loss, we have taught her to embrace her differences and see the benefits.
Not really, I believe we aren’t given more than we can handle
No, I don’t. I knew there was a strong possibility that my son would be born with a hearing loss. His biological father had a similar loss so I knew there was a high chance of it being passed onto him.
I often wonder why us. Ours comes down to genetics we found out throught genetic testing 18 months post diagnosis that our daughter (& sudsequently our son) have pendred syndrome. This is due to my partner and I both being carriers of pendred syndrome. No other family members on either side have genetic hearing loss.
If the doctors diagnosed earlier then she may not have had a hearing impairment
It's always a thought that crosses your mind, but nothing can be done to change what has happened, you move on and do the best for your child.
I always wonder why he it happened did I do something while I was pregnant with him, I never found out if it was genetic or anything I still blame myself constantly
Luck of the draw for us. At the time of diagnosis, I would have considered it "unluck of the draw". But not anymore. I see his hearing loss as just one part of him. I don't believe that some sort of higher power gave us a child with special needs. Not some sort of punishment or higher regard for us to be able to cope with special needs. It just is what it is.
Occasionally I think why me but that’s it really
We were told that her hearing is the nerve not working with the bone in the inner ear. My daughter also has nerve issues with one of her eyes. I always wonder if they are related and if it has anything to do with her birth as she was vacuumed delivered. She also has a lot of fluid build up behind the ears which I have heard (from non medical) that difficult births can affect the spine to push on certain areas of the glands etc.
I used to look at other parent who have children with disabilities and think they must be amazing people to be able to handle that, but now that I have a child (2 actually) with special needs, I think that there isn’t anything special about me, I’m just doing the best for my child like any other parent
Often when I was pregnant I was inclined to think my baby might be deaf. I have no idea where these thoughts came from. I was still surprised when we were told. Now, I don’t really wonder why we have a child with special needs - I feel we are all very blessed to have found each other. My daughter is very lucky to have parents who are very open to difference and how it makes the world so much richer.
Yes, I was in medication for 6 weeks after my son was conceived before I could taper off. I will forever wonder if that caused his syndrome which lead to his hearing loss.
I used to wonder why me? Why us? Why my son? What did we do to deserve this? Now I think we are lucky. We have some additional challenges, but it has made us grow and appreciate people’s uniqueness and not judge people because of a disability.
Not really. Sometimes I think it’s because I am strong enough to handle it. Sometimes I question if I am a bad person. But generally no I just get on with it.
No, the genetic condition, 22q, was spontaneous. Genetics said there was no cause as such. Just random!
Yes, we are a hindu family and believe in the law of karma and dharma. In brief it means that if someone has done something bad in their previous life then they may have some issues in this current life to repent for our previous mistakes. I also thought that God gave us such a child as we are capable of still loving and caring for her unconditionally. It takes a strong heart and strong mind to have a child with any type of disability.
I went to a M Jackson tribute concert in Vegas at 20 weeks pregnant
I have never thought about that. And I can't really imagine her any other way. I wish that she didn't have the struggles that she has faced.
As her diagnoses increased over the years I wondered what i had done wrong to this perfect baby and toddler to make her so different. Then her chromosome abnormality was diagnosed and it all made sense (16p11.2 micro duplication).
Our son is such a popular and happy child. It feels silly to say but everyone loves him. He gets invited to every birthdays party at school and all his teachers love him. I feel like perhaps that’s the reason he was the one (out of our four children) that was born with hearing loss, because it doesn’t seem to have any influence on him socially and he can handle it. He’s a very resilient child.
No. I think we are the right family for him and that he is just the result of luck of the draw! We used to joke that we hit the golden jackpot of disability as there are far worse issues out there!
No, I feel privileged to have a child with a hearing loss as we are all unique and we have communication as a family at home
Yes I believe the antibiotics she was given caused her hearing loss. But we will never know for sure as she was only tested after the antibiotics were given, not before.
We were told by friends and family that it was because we were strong enough to deal with it. I didn’t believe that. First off I believed it must’ve had something to do with the pregnancy or birth. I was v sick during pregnancy and we had an emergency c section, he was resuscitated and then treated with gentamyacin so I assumed something along the way was the cause. Years later found out ultra rare genetic condition.
Yes. I wonder if the high level of uranium dust in the soil, due to the red dust storm with high uranium readings that was present in Sydney at the time of my pregnancy, has any links to his syndrome as there are higher rates of his syndrome with military personnel who are in contact with uranium in their weapona.
Not really .. face challenges when they arise
Naturally, like any parents this did occur to me. I wonder if there were other additional needs my son have at the time of his diagnosis but then all is well.
God gives you what you can handle Genetics is real Infection is bad
I know that my children are truly fortunate to have us as their parents - giving full language access and the best chance at literacy. But I often wonder about the future especially their peers.
I knew why as my daughter was born at 24 weeks.
No we just accept her for who she is & wouldn’t have her any other way even on her most trying days
I worried if I had done something wrong during my pregnancy or birth or was it something genetic We have completed basic genetic and blood test at do not have a cause for her hearing loss
Not at all. It has helped me develop empathy for other parents whose children have far greater challenges. I feel lucky to have life circumstances that allow me to devote most of my time to my child.
Yes, my first question as will my child be in special Ed at school..... of course very stupid and naive question but that was shocks if only I knew what I do now
Yes. Sometimes I am so grateful that he was sent to us and not a family of nuff-nuffs who wouldn’t have cared and put in the hard work in the early years. I am exceptionally proud of my son and what he has achieved to overcome his disadvantage. If you saw him and spoke with him you really wouldn’t believe that he was severe to profoundly deaf - he has no language delay and perfect sounding speech and is at the top of his class! I think that we were chosen to be his parents for a reason
Even to this day my child is 9 and I still question everything and why
Yes, was it something we did, how can we make it up or make him feel included
We had a really difficult time throughout my pregnancy so we were expecting that there would be challenges. We never really thought that his Deafness was a disability but more his hearing. My son has been fortunate that we chose Auslan as his first language so everything else just fell into place l. Our chioce for Auslan was not supported by any therapist or specialist but we slogged ahead and it has been my sons saving grace.
At the time we didn’t know but have found out it is genetic
No as it was an head injury. We were prepared we may have deaf children due to genetic genes