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In the last Update we reported on our quest to get Ketut Wira to Adelaide at short notice. Ketut Wira was in urgent need of treatment for Goldenhar Syndrome as she was ready for school but could not speak, hear or even smile.
Professor David David of the Australian Craniofacial Unit first met Ketut Wira as a baby when he repaired her cleft lip in Bali in 2001. The rest of her surgery, however, had to be delayed until she was 5 years old.
So, in October 2006, Ketut Wira went to Adelaide. She arrived home in Bali on the 22nd December, after almost two months treatment in Adelaide's Australian Craniofacial Unit.
Courtesy of the Government of South Australia, she had a team of experts consisting of radiology, social worker, dentist, geneticist, craniofacial fellow, photography, speech pathologist, craniofacial surgeon, orthodontist, neurosurgeon, eye surgeon, ENT surgeon, paediatrician, anaesthetist and audiologist!
Her treatment included: moving her eyes closer together, straightening her jaw, removal of ear tags, and release of her tongue tie. She has also been given a bone-conducting hearing aid.
She has now spoken for the first time, heard her father's voice for the first time, and smiled for the first time. Her family and all of us at Yayasan Senyum would like to thank all those donors who rallied to her cause at such short notice.
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Ketut Wira arriving home in December
Ketut Wira at home with her twin sister, older sisters and parents in January
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This congenital birth defect involves deformities of the face, usually affecting one side of the face only. Underdeveloped jaw and facial muscles cause the affected side to be smaller than the other; the ears are small or misshapen with skin tags or pits to the front of the ear. Problems in the shape of the tongue may occur. There may also be abnormalities of the vertebrae and a narrowing of the eye opening. Cleft lip and palate may be present. Sufferers, such as Ketut Wira, have hearing and speech problems.
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