Goldenhar syndrome

THE parents of a baby born with half a face have been ordered not to remove her from hospital after a legal clash with doctors over the girl's treatment.

Suzanne and Aziz Rafi have threatened to take their three-month old daughter Maria away from Royal Victoria Infirmary in Newcastle upon Tyne because they are opposed to plans for their baby to undergo a tracheotomy, which involves puncturing her windpipe.

Surgeons have argued that the operation is essential and will help the child to breathe more easily. But Mr and Mrs Rafi insist that it is unnecessary and dangerous.

The dispute became so bitter at the weekend that hospital chiefs got a 72-hour police protection order which banned the couple from taking the child away.

That order runs out at 8pm today. Social workers and the NHS Trust which runs the hospital are returning to court today to seek an extension of the order and may make an application for Maria to be made a ward of court. The clash has reignited the debate over who should have the final say in consenting to operations for babies and young children - doctors or parents.

Mr and Mrs Rafi live in Heaton, near Newcastle, although Maria was born in Saudi Arabia during a trip to see relatives there. She was the only one of triplets to survive the birth.

She suffers from the rare Goldenhar Syndrome where the structure of the face does not develop properly in the womb. The condition means that she has no right eye or ear, and only half a nose.

She is also missing half her right jaw. Weighing only 4.4lb at birth, it is also feared that Maria may be blind and deaf.

The tracheotomy involves opening the windpipe at the front of the neck and inserting a tube to allow air to pass directly into the lower passages.

In a case such as Maria's, the tube may need to be worn for some time or even permanently to ease breathing.

Mrs Rafi said: "I cannot let them do this to my daughter if she does not need it. If she needed it of course we would let them.

"She does not need the operation, but they would not let us remove her. We are looking at transferring her away from the hospital. There is a risk with this operation."

Mrs Rafi said one hospital consultant had told her the operation was unnecessary. She has threatened to take her daughter to Saudi Arabia to ensure that the operation does not go ahead.

Len Fenwick, chief executive of Newcastle upon Tyne Hospitals NHS Trust, said: "The trust will act in the best interests of the child. We would only carry out any operation if it was necessary.

We put the needs of the child first and foremost."

Maria has a severe form of Goldenhar Syndrome and will need numerous operations to construct the missing parts of her face.

The Rafis have already spent their pounds 6,000 life savings on private hospital bills for Maria and have appealed for pounds 500,000 to pay for the surgery. They want the operations carried out privately so that treatment can be completed before she starts school.

Nicola Woodgate, who runs the Goldenhar Syndrome Family Contact Group, said: "It is sad it has to come down to court orders and legal arguments. This baby has a very severe form of Goldenhar but I know of children who have the syndrome and have had a tracheotomy and are now running about like any other child."

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