Lucy's Story
Lucy was born on June 24th 2009, in Nambour, Queensland, Australia, after a normal, uneventful pregnancy. We were unaware at the time that our lives would be changed forever in more ways than one.
It became very obvious to us that she had been born with some congenital abnormalities associated with her face, and at 6 months of age Lucy was diagnosed as having Occuloauricular Vertebral Spectrum (OAVS) which is more commonly known as Goldenhar Syndrome. This condition is rare and effects approximately 1 in every 10,000 births.
Lucy's abnormalities include a small malformed lower jaw, malformed tongue, missing some cheekbone (left side) a small dermoid cyst in her left eye, bilateral skin tags (which were surgically removed at 16 months of age) and atresia/stenosis of her ear canals.
Her left ear has complete atresia (absence of ear canal and ear drum) and is essentially deaf, and her right ear has a severely stenosed canal (very narrow). Even though her right ear can potentially hear well, unfortunately due to wax buildup and persistent glue ear, her hearing is now only at 20-30% and she relies heavily on her bone conductor aid to hear.
Along with her significant deafness, Lucy has also experienced other challenges. She was tube fed for the first 6 months of her life, and continues to have feeding issues due to her tongue and jaw abnormalities. Goldenhar kids are also susceptible to airway problems and sleep apnoea, so Lucy is monitored closely for this.
Lucy will require several surgeries over her childhood and teenage years to correct her jaw, teeth, and left side of her face. But as her Mother I am determined to give her the best hearing possible.
In true Goldenhar spirit, Lucy is a bright happy and tough little girl who is an inspiration to all who meet her, despite the challenges she faces.