The 12-week-old disfigured baby at the centre of a legal battle is caught in a tussle between two sets of people who sincerely believe they know what is best for her: her parents and the doctors.
It is not yet a matter of life and death, but consultants at the Royal Victoria Infirmary in Newcastle believe action must be taken to ensure that crisis does not arise. They want, they say, to reduce the risk of respiratory arrest - a sudden inability to breathe - which would kill her.
One side of her face has failed to develop in the womb. She is missing an eye, an ear, half her jaw and one side of her nose. The "obstructive nature of the condition", said the hospital in a statement, gives rise to a need to "maintain an appropriate airway" as well as ensure she can feed.
The baby is in the children's intensive care ward where she is breathing through a tube. The specialists want to do an exploratory operation, feeding a tiny camera through her nose and down her throat to see what obstruction exists and decide how to proceed.
Her mother, 25, and father, 29, say they do not believe the operation is necessary. On Sunday, when a tracheotomy - a hole in the windpipe to allow easier breathing - was suggested, they threatened to take her away. The mother says she believes her baby is being treated as a medical curiosity. "No one is going to do an operation on our daughter that we feel she doesn't need," she said.
"So many doctors and nurses come in to watch her. She is being used for student purposes. I think the RVI is now a training school and they want my daughter to be an experiment."
She told BBC Radio 4's Today programme: "We spent all weekend basically negotiating about this operation, receiving threats, a child protection order, speaking with lawyers, with managers. Basically we were put in a situation that I think no parent should ever have been put in."
Richard Nicholson, editor of the Bulletin of Medical Ethics, said doctors should make more effort to reach understandings with parents and be careful not to override their wishes in a cavalier fashion. He questioned whether the tracheotomy was necessary in what was not an immediately life-threatening situation. "In this case obviously the tracheotomy is being wanted as an elective procedure that may make it easier to look after this child.
"But this child has travelled from the Middle East. It has travelled by aircraft with reduced levels of oxygen. It survived that apparently all right. So one has to ask if there is an immediate need for a tracheotomy and whether there is an immediate need to involve the police."
The baby was born three months ago at King Fahd national hospital in Riyadh while the couple, who live in Newcastle, were visiting the father's relatives in Saudi Arabia.
They had no idea that the baby had not developed properly in the womb. The father broke the news to his wife after her caesarean section, but she was not allowed to see her baby for two days. When finally she did, she says she was shocked but considered the baby "a gift from God".
She told the Newcastle Evening Chronicle how hard things were at the beginning. "I had never been a mother before and I was suddenly presented with this baby who had so many problems. There were times when I doubted if we could cope, it was too daunting.
"I felt so much love for her but she was so ill. I feared for our future.
"Now I have to feed her with a syringe and watch her breathe through a tube."
The couple returned to Britain and tried to cope at home, but the girl caught a cold and it was clear she needed to be in hospital. They took her to the children's unit at the Royal Victoria Infirmary on February 22, where she has been since.
Newcastle upon Tyne Hospitals NHS trust's chief executive, Len Fenwick, told the Today programme: "We were concerned that when this baby presented at the Royal Victoria Infirmary it had come straight from abroad with no prior warning.
"I understand the child had already been admitted and discharged from two hospitals in Saudi Arabia and came to the UK without any appropriate professional referral from Saudi Arabia."
In a statement yesterday, Mr Fenwick said the child had received the best possible care and treatment.
"The doctors and nurses caring for her have drawn together a care plan and, in particular, measures to stabilise and improve respiratory problems.
"Every endeavour is being made to secure the consent and ongoing cooperation of the parents so that when a treatment intervention is required then this can be undertaken swiftly and appropriately."
The baby could be given all the medical treatment and reconstructive surgery she needs - which could involve around 17 to 20 major operations - on the NHS, but that is not what her parents want. They have their heart set on private surgery by Ian Jackson, the professor who rebuilt the face of the Peruvian orphan known as David, whose operations were the subject of a BBC documentary.
Professor Jackson now lives in the US and the cost of the treatment would be at least £500,000. The parents approached the Evening Chronicle in the hope of raising funds, and on February 27 the paper launched an appeal.
In spite of the parents' firmly expressed wishes, the hospital yesterday made it clear that it expected the baby to be cared for on the NHS. The exploratory operation would also "prepare for any future reconstructive surgery that would be undertaken at either London [Great Ormond Street] or Glasgow [Royal Hospital for Sick Children at Yorkhill] which are the two designated national centres for such treatment", it said.
The mother says she wants private treatment because she hopes the child will have a normal face by the time she goes to school. "I just pray that we can raise enough money to pay for the operations quickly so that her face is fixed before she becomes too aware of how different she is," she said. If they had to wait for the NHS, she says she is sure her daughter will be 40 before the operations are complete.
Experts say however that the complex surgery will have to continue until she has stopped growing. "This child faces 18 years of operations. The parents have got to find a surgeon that they can trust and that they can work with on a regular basis," said Ian Hutchison, one of Britain's leading facial surgeons. "Clearly the trust has broken down somewhere along the line."
At the age of three or earlier, surgeons will start to stretch the jawbone in a series of operations to help the child eat properly and survive, he said. Aged four, the child will have plastic surgery to create an eye socket, which will have to be replaced as she grows. Rebuilding the nose, from age seven, is the hardest part of the procedure, using a combination of bone and tissue grafts and plastic surgery. Finally she will be given a new plastic ear.
