Like most new parents, Carol and her husband Henry were so proud when their first child Davie was born. They immediately fell in love with their gorgeous little boy yet their happiness was tinged with fear and anxiety over what lies ahead for Davie.
When he was just three days old, Davie was diagnosed with a genetic condition called Treacher Collins Syndrome. Henry’s brother has the same condition so Henry understood the implications far better than Carol. She felt devastated with the diagnosis and overwhelmed with all the unknowns.
The Syndrome has prevented Davie’s skull, cheek and jawbones from developing properly. Davie’s ears aren’t formed properly either so he is deaf. He also has small airways, which cause difficulties breathing.
Since he was tiny, Davie has struggled to breathe at times. When he was just a baby, Davie was rushed to the Royal Children’s Hospital, placed in Intensive Care and still they struggled to get enough oxygen into his tiny little lungs. None of the different oxygen masks they tried fitted properly because of Davie’s lack of cheekbones.
Carol and Henry anxiously watched every laboured breath he took. Davie spent a lot of his first year of life in hospital and on ventilators.
While Carol and Henry have done everything they could for Davie, this is not always the case for children with disabilities and complex needs. Recently, Carol, Henry and Davie met British activist Jono Lancaster from the BBC documentary ‘Love Me, Love My Face’ who travelled to Australia to support children who have Treacher Collins Syndrome like himself. Jono’s parents looked at their tiny little son and gave him up for adoption two days after he was born. Supported by his wonderful adoptive mum, Jono began a long road of personal self-discovery to defy those who made fun of him and become the positive, confident young man he is today.
Carol and Henry are determined to make Davie’s path through childhood easier.
“A beacon of light”
Carol tells us that when they heard Davie has Treacher Collins, she started worrying about all the possibilities. “I was in such an emotional state. I felt like the future I had imagined for Davie had suddenly been swept away and replaced by something unknown. My mind was buzzing with questions and of course, one of my biggest worries was how he would cope with his deafness. I found Deaf Children Australia and to my relief, was connected up immediately with a parent mentor, Christina.
She was literally a beacon of light because she understood how I felt. Christina had been down this road before with her own son’s deafness. She helped us firstly to accept the diagnosis and then guided us with how to interact with Davie. He doesn’t have proper ear canals – one ear is just like a little peanut – so he couldn’t hear us. Christina provided reassurance. I had all these questions and all these fears for my little newborn son: ‘Is he going to be okay?’ ‘Will he be able to make friends?’ I needed to hear another parent’s advice. Deaf Children Australia’s Mentoring Program gave me so much hope that with the right supports, Davie would be okay.
DCA provided lots of support, information and Australian specific resources. They understand children like Davie who have complex needs and they can navigate us through. I attended DCA’s Better Start workshop over several days and got to know other parents and their children. Through DCA, I have met so many parents who have advised us of language choices, and techniques and strategies they use to support their deaf child. Knowing DCA is here and specifically providing expertise and support for children really gave me the confidence that we could make the right decisions – because the learning and language development is so critical.
Because he doesn’t have formed ear canals, Davie wears a Bone Conductor Hearing Aid and when he is around five, he will have a Bone Anchored Hearing Aid (BAHA) inserted into his head with a screw. At 23 months, Davie is attending an Early Intervention Centre and has been learning to say a few words. He is a little behind so we will get extra assistance with audiology and speech therapy. We know he can’t hear the soft consonants but speech therapy can help him learn how to make those sounds. We want Davie to have that second language and through signs, we can understand when he wants something. We have been learning baby signs and he is always signing ‘Where is my Thomas?’ because he loves Thomas the Tank Engine. It is very cute that when he signs thank you, he adds a kiss.
We know Davie has a lot of challenges ahead but DCA’s ability to guide us in the right direction has been invaluable. We will keep accessing all the resources and in the future, Davie can join in recreation activities so he can get to know other children who are deaf.
Now, Davie is on the waiting list for his tonsils and adenoids to be removed. This surgery will open up his airways more but he will have to be in Intensive Care on the ventilator again because he won’t be able to breathe naturally. The surgeons will do another cheek graft while he is under anaesthetic. Davie will need five more cheek grafts and when he is 15, he can have plastic inserts for cheekbones. He might have his lower ribs removed to build his ears up so he can wear glasses because Treacher Collins also commonly causes vision problems. But we would like Davie to decide how much surgery he has when he is older. I am in a much better space now to support Davie through all this and I want to thank Deaf Children Australia from the bottom of my heart for all the work you do.”