Moana Lynn’s Story by Kyleigh... her mum.

I have three daughters, and my third daughter Moana-Lynne who was born in January of 2016 was born deaf. It was picked up at her hearing screening examination shortly after birth at the Mater Mothers hospital. The result of this hearing screening resulted in an urgent referral to the Lady Cilento Children’s Hospital. Now the Queensland Children’s Hospital.

I was utterly shocked.

Myself being a second year student midwife, I was thinking in my mind that her hearing would be fine once the remaining amniotic fluid drained from Moana’s ears. As our referral was urgent we were seen two or three weeks later. At the appointment with the audiologist, a confirmation of severe to profound deafness was diagnosed. I was at the appointment with my mother and at first I didn’t comprehend the diagnosis. I was utterly shocked, and then it hit me. My emotions came running out. Moana would not be able to hear me say I love you, she wouldn’t hear all of the beautiful sounds of nature or animals, she would not be able to hear her sisters and other family members talking. It was absolutely shocking.

We were given the opportunity to be fitted for hearing aides at one of the early appointments and I remember being so excited about this. I thought with the opportunity to have hearing aides Moana would be able to hear our families' voice. As she was fitted we sat in anticipation of a response. The audiologist from Australian Hearing then banged on some instruments and Moana didn’t even budge. I was heartbroken. I couldn’t hold back my emotions. I honestly believed that she would have some reaction but this was the first of many appointments, tests and specialist appointments that would determine Moana’s future.

A long challenging journey

It was to be the start of an incredibly long, frustrating and challenging journey. Although in the beginning it was so overwhelming but with the help of the family support worker from the Queensland Hearing Loss Family Support Service, would guide us through the incredible maze of information and services that we were now to engage with.

The cause of Moana’s deafness was put down to a genetic factor Connexin 26 mutation. This was interesting as neither myself or my husband had any sort of knowledge or family history that were knew of that would comfort us with this diagnosis. I had many family members tell us different stories of people they knew that had hearing impairment and they got their hearing back. I was living in hope that this was the case but to no avail.

The cochlear implant pathway

We began our journey down the Cochlear Implant pathway. This in itself was no easy task. It felt like the same audiology assessments were performed with the same outcome. We even began taking lessons at Hear & Say, and our first therapist I remember being frustrated that she was saying how Moana responded and I now know that she had coincidental responses, probably responding to vibrations or something.

There were times that I would let my frustrations be known. Like why are we repeating these tests over and over with the same outcome? It felt like they were just wasting time and money and progress was being delayed. It was so frustrating. And now when I think about it and after the outcome of her diagnosis, I felt that anything we had done was a waste of time.

How I found out about my child’s deafness

My daughter was born on the 19th January, 2016, she had a newborn hearing screen done on the 20th and 21st. Both were referrals for both ears. I, being a student midwife just thought there was excess fluid in her ears, little did I know that this would be a clear indication that there was something wrong. We were referred to the Lady Cilento Children’s Hospital, now known as the Queensland Childrens’ Hospital. That is when we undertook an audiology assessment. This was when Moana’s hearing impairment was diagnosed.

How I felt at the time

I was devastated. Not because my daughter was deaf, but mostly because all of the things that she would not have heard when she was in utero. Not recognising the voices that surrounded her during my entire pregnancy. It was later that I realised that she did not settle very well, and I thought to myself, if she was unable to hear her family or see us she would be filled with fear.

How I feel now

Moana is 5 now and just started prep at a local primary school. I am still worried about a lot of things. How she will go at school, how will the other kids treat her, will she be teased and bullied because of her hearing loss. I am very much an active parent in the school so the teachers know and understand my concerns. I have developed a great relationship with my girls school and her teacher. Should any concerns arise we can face them together. I am just trying to see day by day on the challenges and not look to far in the future.

What has helped get me to this point

The challenges we faced as a family were hard. Our larger supportive network of family and friends helped and supported us as much as they could. In particular I had many friends with medical backgrounds and they were able to give me the support and encouragement that we needed to remain positive and know that the ultimate outcome of Moana being implanted bilaterally would be our ultimate goal and we should focus on this. Our faith and prayers also helped us.

What I find difficult or challenging now

Wow! The challenges where do we start? Moana had to wear hearing aides to stimulate the nerves. A newborn baby having hearing aides was okay in the beginning but then she developed those fine motor skills and was able to rip them from her ears this was the start of many moments of frustration and tears. Moana had to wear these bonnet like caps to stop her from removing them and she hated these caps so much. Then when she was finally implanted she had her Cochlears. These were stressful times as we had to keep them on Moana’s head and try hundreds of distraction methods to stop her from pulling them off.

Later on she started removing the Cochlears and hiding them in the most ridiculous of spaces. We tried keeping them in place with Hearing Henry bands, and for the most part of the time she kept them on. As she got older it was just so stressful we were only averaging about two-three hours of use per day. Hear & Say, the ultimate usage time was eleven+ hours and I was like this was never going to happen. During 2020 I can happily say that Moana is averaging about 10 plus hours per day. Moana has come ahead in leaps and bounds and will continue to do so.

How my family/extended family and friends initially reacted to my child’s diagnosis

Incredibly many of our friends and family were devastated with the diagnosis just as much as we were. It was more now a process of educating people about Cochlear Implants and what they do. When people see us out in public and they recognise that she has hearing devices, their first instinct is to say oh you poor thing. I am always quick to respond that this is great she has no other side complications to her deafness and that she is healthy otherwise. I feel our biggest challenges will arise when she starts school in educating her teaching staff and her fellow students.

What happened following my child’s diagnosis?

With Moana’s diagnosis, it was left to us to educate ourselves and equip Moana with the best resources to enhance her life. We were provided with so much information to sift through and gain the best possible knowledge in the smallest amount of time. We had to engage with services that we had no idea of what their relevance was. We had to make decisions on what pathway her communication and hearing journey would go down. In the beginning due to my busy schedule of studying and trying to complete my degree we initially chose the spoken language pathway for her. Now after great consideration and knowing that she is completely deaf without her cochlears on we have since been able to achieve funding through the NDIS to learn sign language.

Moana currently receives face-to-face lessons with a spoken language specialist from Hear and Say and also attends the Mount Warren Park Early Childhood Development Program. Moana has achieved so much in her little life and is finally starting to speak more using sentences and language in the appropriate way. Conversations from her daycare provider has advised that she is finally starting to talk a little more and engage well with others.

What led me to make those decisions?

After much research we knew the implantation pathway would give Moana access to the sounds that she needed to go about living a almost normal life as a hearing person. It was really a no brainer. Besides we did not know sign language and didn’t have someone full time in our lives that new Auslan.

Looking back, do I wish I’d have done anything differently?

No. Ultimately we wanted what was best for Moana and her future. I just wish the operation to have the implants didn’t have to wait for so long. It feels like an eternity and then being implanted on the 9th of December, 2016 and switched on 5 days later.

Has my child’s diagnosis changed my views on deafness, disability, parenting, what is important

I think ultimately we have a greater awareness of the deaf community and are more understanding to our children now having a disability tag placed upon them. When Moana was diagnosed I wonder how many more Indigenous families were going through the same challenges and I also wondered if they realised the importance of following through on all appointments that came with this journey. Being a health professional myself I know the importance of appointments and engaging with services to assist the hearing journey of a hearing impaired.

The impact my child’s diagnosis has had on my relationship, career, financial situation etc

Moana’s diagnosis had a massive impact on my career and our financial well being, but you cannot let that aspect of life be a priority. Moana achieving the goal of being able to hear, speak and communicate in life was our biggest priority. As I was studying at the time this had to take a back seat as the appointments leading up to the implantation are many. It was a difficult time financially as I had to miss out on hours and hours of work. I am grateful I was on maternity leave for the most of it. When that ended I had to give my job away and focus on Moana and my studies.

It became difficult after that due to the expense of Hear & Say being on the northern part of town and hospital visits became costly due to the costs of parking. Other than that we were better off than other families and that was something we had to be grateful for.

My top 5 challenges so far?

Initially the appointments were the biggest challenge as it seemed repetitive and a waste of time, but there are reasons for it.

The challenge of keeping the cochlears on Moana’s head.

The thought that she has these for life.

Thinking about her future and what it holds.

How I have dealt with those challenges

I think I just take everything as it comes and have a positive outlook on anything comes our way.

What has been helpful, or had a positive impact, on me

I think the most important aspect of the entire journey is the having the Queensland Hearing Loss Family Support group there from the beginning was great. Then getting to know the staff at Hear & Say. Most importantly my daughter's happiness.

What has been unhelpful, or had a negative impact on me

I feel the most unhelpful thing about this journey would have to be the excessive screening that is undertaken. So many different tests performed just confirming the same thing. I think it gave me a negative impression of that maybe they would find something different on each occasion.

Five strengths I see in myself as a parent

• Resilient
• Focused on the goal a good outcome for my daughter
• Organised
• Accept Support
• Share knowledge

Five strengths I see in my child

1. Happy
2. Resilient
3. Loving
4. Cheeky
5. Mischievous

Five strengths I see in my family unit

1. Resilient
2. Loving
3. Well Supported
4. Positive
5. Grateful

How I view my child’s future now – fears and anxieties, hopes and dreams

We take each day as it comes. We try not to look too far in the future as only time will tell. Moana was recently diagnosed with Epilepsy and now we have this also to consider along with her hearing impairment, but we continue to maintain a positive outlook. We must keep being strong for her and ensure we give her the love, support and compassion that every child should have and ensure she has a normal and happy upbringing.

I want Moana to chase her dreams and achieve everything she puts her little mind to. I have no doubt she will.

What I want most for my child.

I want her to have access to everything that she needs regardless of her hearing impairment.

Based on my own experiences, my 5 top tips/advice for families with a newly diagnosed child are:

1. Be a part of a bigger support group such Deaf Children Australia.
2. Knowing parents with hearing impaired kids can be so comforting.
3. Being apart of different facebook pages can offer support and advice.
4. Being prepared. Have all reports that you are given scanned in and emailed. So upon request of the supporting services you can easily access and forward information at request.
5. Remain positive.