Australian Craniofacial Unit

Ms DIGANCE (Elder) (15:21): This year the Australian Craniofacial Unit achieved an important milestone, celebrating its 40^th anniversary. The unit was established in 1975 by a visionary and compassionate surgeon, Professor David David, in collaboration with his fellow specialists. I am pleased to say that it was a Labor government, under the innovative and future-thinking premier, Don Dunstan, that saw the crucial importance of such a focused centre in changing the lives not only of South Australians but Australians.

And so an ambitious project saw the establishment of a national centre of excellence in the field of craniofacial surgery right here in Adelaide. The unit was the first of its kind in Australia and in fact today the Australian Craniofacial Unit at the Women's and Children's Hospital is still the only unit of its kind in Australia and one of only two dedicated stand-alone multidisciplinary craniofacial units in the world. That is worth repeating: it is one of only two dedicated stand-alone multidisciplinary craniofacial units in the world.

As a young surgeon, Professor David David's passion was fuelled by the inspirational work of French surgeon Paul Tessier, who was a pioneer craniofacial reconstructive surgeon. During World War II, Tessier had developed a surgical and rehabilitative approach in support of burns victims who often found themselves in mental institutions—entirely sane, but rejected by society because of their physical disfigurement.

Society judged harshly and he had a mission. The message was powerful for Professor David as he was driven by the promise of enabling a new start for those struggling with facial disfigurement. He would do this by way of a professional team approach—an approach to look at the whole person and, indeed, the whole family.

My interests in this unit are many. Notably though, first of all, even with incredible advancements in medicine, one in 500 babies are born with craniofacial abnormalities. It was in 1990 that my eldest daughter, Amelia, was born in Darwin with a rare bone disorder that would affect her personal journey, her growth, her physical development and go to the core of who she was and is today.

It was an event that began our journey as a family, with my husband, Greg, and her two younger sisters, Georgina and Emma, all deeply involved. It has shaped all of us for the better, but at times that was not clear when we were in the thick of things. I believe it shaped Georgie and Emma's career choices also, with Georgie studying medicine and Emma studying speech pathology.

When Amelia was born, I knew instantly as soon as I held her that I needed to have her checked by a paediatrician. Her skull bones had not meshed and the anterior and posterior fontanelles of her skull were open well beyond the norm. Investigations and blood tests ensued, and the week long wait for results to confirm diagnosis was excruciating.

We had been told that she would have one of two conditions, and for one of these conditions, we were told, 'Take her home and enjoy her; you will not have her for very long.' Thankfully, we received the news that she would indeed live but that she had a very rare bone disorder, where bone would not grow or would grow slowly, and that there would be an unpredictable developmental journey. We were referred to Professor David in Adelaide for her care. It was the best and right decision.

Over her developing life we would spend days straight within the walls of the Women's and Children's Hospital, filled with specialist appointments: neurology, dental, orthopaedic, X-ray, CT scan, speech pathology, ophthalmology, paedadontics, oral surgeons, audiologist, orthodontist, ENT specialist, social workers and case workers, culminating in a case conference to discuss progress and plans. In her 25 years, Amelia has undergone too many operations to mention, including major facial reconstructions of her entire face and forehead. The risks of these operations are enormous. The outcomes for her—gratefully due to the coordinated care—have been more than we could ever have hoped for. Her sisters have been really supportive along the way.

Along this journey, as we sat for countless hours in waiting rooms, we saw and talked with those who were less fortunate than us, who did not enter the unit at the beginning of their journey and were there to have their faces, yet again, reconstructed, with repairs and damage to be reversed. What is special and significant about this unit is that professionals and specialists come together in one place to discuss, monitor, deliberate, craft and guide the care, and we are grateful—coordination is the key. We have a gem in this national centre of excellence—we must care for it so it can care for those who face the world under a cloud.

It was when I heard Amelia speak at a function, as ambassador for Craniofacial Australia, that I realised what she had truly confronted: the teasing, the sideways glances, the whispering, the pointing, and the innuendos that would try to make her feel less of a person—the judgement that peers and others made of her based on how she looked was overwhelming, and her speech brought us all to tears. It was not until one of her stays in critical care post facial reconstruction that her sisters realised that she indeed walked a different path. We had never treated Amelia as disabled—the strength of the unit and their support gave us this comfort and perpetual belief that she would be okay.

She is okay—she is tenacious, determined, involved and a 'can-do' person with a strong sense of social justice, and she has now returned to her birthplace, Darwin, to work as a young lawyer. The people and professionals of the unit became our extended family, and still are, as over 25 years our contact and interaction was constant as they monitored and intervened on Amelia's physical growth, dealing always in unknown territory—always honestly admitting they were never quite sure how in her case she would develop physically but always with the utmost professionalism and respect. I am grateful, my family is grateful, to the Australian Craniofacial Unit—Professor David David, Dr Michael Nugent, Bron and staff—you are a South Australian jewel.

Time expired.