Interview with Anne-Marie...

Age at Diagnosis?

At birth

What treatment have you had for this Craniofacial difference?

Diagnosed at birth, I had my first operation as a baby at 3 months old to commence repair of my cleft lip. Craniofacial reconstruction and surgery continued until I was an adult, 20 years old. The treatment was multidisciplinary and included speech therapy, lots of tailored dental work, cornea implant, management of congenital hearing loss in my right ear, and I lost count of the amount of craniofacial reconstructive surgery...perhaps 15-20 operations with Professor David.

What do you remember most about the early days of treatment?

As a young girl, particularly when I was primary age and aware of my facial differences as I went through surgery almost yearly...I saw my imperfections. I was fortunate to have such a supportive network, my Mum, my family and the incredible Professor David right beside me, so as tough and painful it was over the years, I was never scared and trusted the doctors and the team involved. Having my Mum stay in hospital with me for every operation over the years, every night made a huge difference for me and Professor David was so supportive on so many levels.

How has this Craniofacial difference impacted your life and family?

 It has been nothing short of a positive life experience. It's truly the foundation of who I am and I wouldn't change anything. I am more than my face and now as a mother myself, happily married...my boys tell me constantly that I am beautiful and perfect. For me, that is all the validation I need. I am proud of the work the Craniofacial Unit has not only done for me personally, but for children and adults locally and internationally. Growing up through years of surgery, it accelerated my personal resilience, confidence and ultimately it made me accept who I am and respect and honour the commitment of my family and the ultimate care from Professor David and the multidisciplinary team it took to achieve these results. I will always be eternally grateful, proudly share my story, advocate and bring awareness to a world class unit that has and continues to do so much for so many.

Is there something you wish more people knew about this condition?

It can be very confronting for parents to be told that your baby has a cleft lip and palate perhaps, that they will need to undergo numerous surgeries into young adulthood to reconstruct...but, with the incredible medical team we have here in Adelaide you will be supported and guided through everything and your child is in the best medical hands.

What is one piece of advice you would give to someone receiving a similar diagnosis for their child?

Your child is perfect and beautiful!
Be there every step of the way for them, hold their hand as they are wheeled into theatre (it brings them comfort and a sense of calm), always advocate for them, don't be afraid to ask questions, help build their confidence and resilience (unfortunately other kids can be unkind), teach them self worth. It's a long hard road sometimes but we are so fortunate to have the Craniofacial Unit and the incredible work pioneered by Professor David...you are in great hands.

Is there anything else you'd like to share?

I am always honoured to share my story, proud to talk about the positive experience and impact the Craniofacial Unit has had on my life. It has been life changing in the best possible way.