Goldenhar syndrome

HOSPITAL CONSULTANTS were granted legal powers yesterday to prevent a couple who have lost two of their triplets from removing the surviving baby from an intensive care ward.

In a painful case highlighting the plight of traumatised families whose children are in medical care, magistrates imposed an emergency protection order on the girl, who is at the Royal Victoria Infirmary (RVI) in Newcastle upon Tyne.

She was born 12 weeks ago in Saudi Arabia with the rare Goldenhar syndrome, which left her without her right eye and ear and with only half her nose and half her right jaw. Her parents, who brought her to Britain for treatment, threatened to remove her on Sunday afternoon, when an RVI nurse told them that a camera was to be inserted through their daughter's nose in a preparatory investigation for an eventual tracheotomy. They were clearly still shocked by the stillbirth of two of their babies and the condition of the surviving girl, which had not been revealed in pregnancy scans.

Fearing for the life of the child, who was already critically ill with breathing difficulties, the hospital was granted a 72-hour police protection order. By the time it had expired at 5pm yesterday, Newcastle City Council's social services had been granted an emergency protection order because of what the RVI described as the "uncertainty and difficulties encountered with the parents".

On a day of high emotion for the parents, which included a morning locked in discussions with lawyers and an afternoon appearance before Gosforth magistrates to hear the protection order granted, medical ethics specialists warned of the potentially traumatic consequences when such disagreements end in court . Dr Richard Nicholson, editor of the Bulletin of Medical Ethics, said medical staff must find the time to agree treatment with the families of young patients.

On the basis of an RVI statement last night, the parents, who cannot be named for legal reasons, are in no position to resist a tracheotomy. The hospital said it was necessary to prevent respiratory failure, which would otherwise probably kill the girl, and to prepare her for the substantial surgery - at least 18 operations - which will be needed to rebuild her face.

But the unexpected news of the need for a pre-tracheotomy scan appears to have been the last straw for the parents, whose resentment toward the hospital has been growing since their daughter was admitted on 22 February.

The alleged practice of demonstrating her unusual condition - which affects only one in 500,000 births - to medical staff is a particular grievance, the mother said yesterday. "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."

The couple's understanding of the girl's needs has been clouded by the child's two months of treatment in Riyadh, Saudi Arabia, where she was born during her parents' year-long residence with the family of her father, a Saudi national.

The RVI has replaced nose drops used by Riyadh consultants to help breathing with a suction procedure which, the mother claims, caused the girl's nose to bleed.

The mother says the hospital also failed to clear up potential medical misunderstandings. The chief executive, Len Fenwick, did not reply to a letter and three concerned telephone calls from her, she said.

Mr Fenwick would not comment yesterday, though the hospital did issue a series of press statements which seemed to demonstrate a softening of its stance as the events of yesterday transpired.

The first stated: "This 12-week-old child [was] presented without prior warning ... and since then has received the best possible care."

Several hours later, it said that "the consent of the parents" was being sought "to progress with what is essential treatment".

Lamentably for the girl and her parents, the tracheotomy is the least of their problems. Goldenhar syndrome is associated with a collection of abnormalities that are not limited to the face. The parents are yet to find out whether the girl is, as they both fear, blind and deaf.

Other complications include heart problems and kidney abnormalities, learning difficulties in about 13 per cent of cases, as well as language problems as a result of deafness. There may also be speech and swallowing problems.

"I feel robbed as a mother," the mother said yesterday. "I don't think [my girl] recognises me sometimes as I have had so little contact with her. But she knows I'm her mother. When I see her crying I bring her to my chest and she falls asleep."

The parents, who have no other children, are desperate to raise pounds 500,000 for private reconstructive surgery before she starts school. They started a high profile fund-raising campaign in the North-east with pounds 6,000 of their own savings last week.

Ian Hutchison, of the Facial Surgery Research Foundation, said yesterday: "The surgeons in Newcastle are excellent but somewhere along the line the trust has broken down between doctors and families and it's got too be restored.

"[The girl's] face reconstruction is going to take 18 years. The parents need surgeons they can trust."

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