2 years old, Profound hearing loss due to Treacher COllins Syndrome

Wears two Baha Hearing aids

Davie was diagnosed with his hearing loss when he was a week old after having the Newborn screening test. He has a rare genetic syndrome called Treacher Collins Syndrome. He doesn’t have fully formed ears and he is severely deaf. He has conductive hearing loss and requires a bone conduction hearing device (BAHA) which is made by Cochlear. He is too young for the device to be implanted so he has to wear this on a headband. He received his first hearing aids when he was12 weeks old and will need ongoing surgeries due the cranial facial and respiratory challenges .When he is older he can have the BAHA implanted. 

We learnt baby sign and Auslan when Davie was young. We didn’t know if he could hear well or learn to speak so we opted for both Auditory-verbal therapy and using sign language. He learnt to sign to us first which we were thrilled about and later he learnt to speak. It was fantastic being able to communicate with him with Auslan. He prefers to speak now and doesn’t use much sign.  

At first we felt shock, sadness and grief. His deafness was more of a shock than his Treacher Collins syndrome diagnosis. We didn’t have any deaf family members or friends so we felt we were entering another world that we didn’t know much about. We struggled for a little bit but soon channeled our energies into learning how best to communicate and ensure that Davie was healthy and happy. 

The Deaf Children Australian mentor program called Beacon was fantastic. They put us in touch with a mother who has a deaf son and she was able to provide advice, tips and real life practical guidance on how to communicate with Davie. We also received a lot of support from Taralye in Blackburn. They provide auditory-verbal therapy sessions and family programs. 

We also had support from Villa Maria from their physiotherapist Jill Edwards and speech pathologist Laura. Fiona Holder from Cochlear provided excellent ongoing support regarding Davie’s hearing aids. There is so much to learn about the devices and now we have an app on our phones to use too!  Australian Hearing provides audiology testing and support for his devices and Davie’s paediatrician and the specialist medical team at Royal Children’s hospital have been amazing. Dr Howard Goldenberg and GPs at Camberwell Medical centre have been fantastic as well in caring for Davie. Jono Lancaster (from the British documentary Love me love my face) also has Treacher Collins syndrome and wears the same hearing aid as Davie. He provided fantastic insight and advice on how Davie can best manage and accept his condition. He was very inspiring. Aussie Deaf kids website is also a great place for resources and useful information and that has helped us a lot. 

 Carol, Henry and Davie

Carol, Henry and Davie

Being part of this Right hear, Right now project with Kate has been great as we get to share our experiences and can see how happy, creative and successful she is!  Our family and friends are incredibly supportive and they are willing to learn how best to communicate with Davie and they provide a lot of ongoing encouragement and emotional support. Both sets of Davie’s grandparents and great grandma have provided a huge amount of support. As you can see, it has been a whole community that has supported us. We are very grateful and lucky.

Davie is pretty positive and doesn’t see his deafness as a big deal. I guess because he is still young. He does know that he is different because he has asked us ‘why don’t the other children wear hearing aids?’ He knows he can’t be outside in the rain (as the hearing aids are not water proof) and sometimes when the hearing aids do not work he gets frustrated when he can’t hear us. When we are in loud places such as busy cafes and food courts it does stress him a little as the noise can be too much for him.

Difficult moments have only been at Childcare when the older boys took off Davie’s hearing aid and ran away with it. He was upset then. He has also had children at Childcare tell him he has small ears and ask ‘what’s wrong with you?’ Some people stare at Davie when we go shopping because of his facial features or they stare because they have never seen a bone conduction hearing aid before. We understand the curiosity that people may have so we encourage Davie to introduce himself and explain that the little grey boxes on his head are actually hearing aids.  Many people are grateful when we explain this and they start talking to us and share their own personal stories of friends and family members who are deaf or they take an interest in learning about deafness and the challenges we face. 

We have not let Davie’s deafness stop him from participating in everyday life activities. We are so proud of him, his educators Judy and Deb and all his class members at Auburn South Kindergarten. All the children there have been welcoming and supportive and Davie has been happy there.  The educators made a special effort to ensure that the children understood and learnt about Davie’s hearing loss and hearing aids. Even the parents were interested in learning and that heartwarming. Seeing Davie enjoy his swimming lessons is another proud moment. As he cannot wear his hearing aids in the water he can’t hear a thing yet he has slowly managed to build confidence in the water. 

Hearing Davie speak when he was 2.5 years old was another proud moment. 

There are many challenges and they include learning the health system and knowing what range of medical and speech services can help your child. Educating your community is important too. We have had to explain Davie’s situation to all staff and children at his childcare centre and kindergarten. I guess it’s an ongoing educational role that you play. Another challenge is ensuring Davie can hear us and learn to communicate well. To overcome this we try our best to speak to him and interact with him as much as possible. Connecting with other parents (who have deaf children) always helps as you can share advice and tips. Each year of his life there is something to learn from and work out, for example 4 months ago we couldn’t find a helmet that would fit over his hearing aids but we got there in the end and now he can scoot around with his helmet just like any other kid. 

The biggest challenge Davie will face will be people judging him on his looks and his hearing aids. We learnt from Jono Lancaster to stay positive and do things that every ‘normal’ child does. It’s important that he is supported and to know that he is loved no matter what.  Being in loud places means that Davie gets a little stressed and it’s too overwhelming at times. We just try to find places which are quieter or not stay too long in places which are loud. Not being able to hear his educators or teachers clearly is a challenge and we see this a continuing journey and one where we partner with Taralye to help provide information on how best to set up the class room so that all the children receive the best possible sound quality. 

Davie is a friendly and happy preschooler who loves trains, sport and his family and friends. We have all learnt a lot on this journey regarding deafness and facial difference. We love him very much and wouldn’t change a thing.