KEY POINTS:
The mother of a 4-year-old girl potentially exposed to the fatal brain condition Creutzfeld-Jakob disease says vital surgery on her face has been jeopardised by the risk the disease could pose to others.
She said the surgeon told her that her daughter's potential exposure would seriously jeopardise her future surgery because an expanding frame cost "thousands" and was needed for other patients, but could not be used on others after her.
The Weekend Herald revealed that Auckland City Hospital failed to clearly advise Middlemore that the child might have been exposed to CJD.
Sarah - the family's names have been changed to protect their identity - and her mother, Sharon, have Crouzon's syndrome, a rare genetic condition that leads to abnormal development of the skull and facial bones. Sarah suffers serious physical complications: breathing difficulty; headaches; potentially-fatal fluid pressure on the brain; spinal cord pressure that could cause paralysis; protruding eyes that are at risk of injury, infection and blindness; and she cannot eat or drink normally.
Special tubes have been surgically placed in her brain and spinal cord to relieve pressure; in her throat to improve her breathing; and through her abdomen into her stomach for feeding.
Sharon said it would be unfair if Sarah was denied the treatment. It was expected she could breathe normally without the tracheotomy in her throat after the treatment and she would avoid the inevitable teasing at school over her appearance.
"It's her right, definitely, to have it, just like anybody else."
Middlemore Hospital spokeswoman Lauren Young said it would do what was necessary to ensure the girl had the series of operations to bring her face forward.
In March, she was at Starship - part of the Auckland City Hospital complex - to have the tube, called a "shunt", placed in her spinal cord.
She was one of 43 children and adults treated at Auckland with sterilised surgical instruments that had previously been used in an operation on a woman who later died of CJD. They are at risk - a very small risk - of developing the disease.
Sarah had a facial bone graft at Middlemore last month, using bone taken from her skull, down to the outer brain membrane. It was a precursor to operations next year, when an expanding frame will be temporarily attached to her head to pull her face and forehead forward.
Auckland City Hospital did not properly flag Sarah's potential exposure to CJD on an electronic note when she was referred to Middlemore. Staff were unaware of Sarah's potential exposure until Sharon raised it after the operation.
Computer systems are being changed to avoid a repeat and the instruments used on Sarah at Middlemore will be kept for treating only her.
Ms Young said: "If the surgery is clinically indicated, it will be done. The surgeon possibly thought there would be [financial] constraints, but we would go to the South Auckland Health Foundation to make sure this little girl gets her surgery."
