Alder Hey: New verdict on organ boy's death overruled

Four years after the death of a three-year-old boy whose organs were stored without permission by Alder Hey Children's Hospital in Liverpool, his father learnt yesterday why his son died.

Four years after the death of a three-year-old boy whose organs were stored without permission by Alder Hey Children's Hospital in Liverpool, his father learnt yesterday why his son died.

Anthony Truby, of Wrexham, north Wales, was beginning to come to terms with his son's death until it emerged last year that the boy, Matthew, was one of more than 800 children whose organs had been stockpiled at the hospital without parental permission since 1988.

At yesterday's inquest into the death - the first of dozens to be held into the deaths of children whose organs were stored - the anxieties suffered by Mr Truby and other parents were laid bare. So disturbed was Mr Truby by revelations about the hospital's practices that he began doubting the cause of death, undertook complex detective work of his own and was then confronted by conflicting pieces of evidence, the hearing was told.

Mr Truby obtained a hospital post-mortem report which appeared to show discrepancies with medical notes provided by the hospital. The cause of death was originally given as "natural causes" but a chest drain inserted during the surgery also seemed to have been at fault.

The coroner at yesterday's inquest, Andre Rebello - whose remarks about Alder Hey's organ stockpiling prompted Alan Milburn, Secretary of State for Health, to order an independent inquiry into the issue last December - overturned the hospital pathologist's verdict and recorded a verdict of misadventure because surgery contributed to the death. He said: "I am satisfied on balance that the surgery or surgical procedures caused Matthew to die when he did die, as opposed to dying within a few months."

The conflicting verdicts imply no negligence on the hospital's part but do appear to support Mr Truby's doubts about the original prognosis.

Mr Rebello said the medical profession had taken "too paternalistic" an approach over the years by failing to involve families in decisions relating to children. "We have learnt a lot over the last 12 months about accountability and explaining [to the bereaved] what is being done in regard to investigating a cause of death," he said.

Although organs were needed by pathologists to examine causes of death, "loved ones of the deceased [should be] advised as to their options", said Mr Rebello.

Matthew died during a second part of surgery for a congenital heart condition on 22 February 1996. He was born with a defective left ventricle and a hole in the heart, and the inquest was told that without the surgery he could not have survived for more than a few months. A series of operations were performed to adapt the heart to cope with the defect but after the final stage of surgery he did not respond well and the operation had to be partially reversed. He subsequently died.

The inquest demonstrated the experience of many parents who have investigated their children's deaths, said Ed Bradley, chairman of Pity II, a support group set up for parents affected by the controversy.

Mr Bradley said: "It was when certain information about organ retention came to light and parents started to examine case notes that queries came to light about causes of death. Some asked independent pathologists for opinions and found they disputed the cause of death being offered."

Although the inquests will assuage some doubts, they create new ordeals for parents who must revisit the circumstances of their children's deaths.

Mr Truby could not bring himself to attend yesterday's inquest. In a statement he said: "Since Alder Hey have removed and retained his organs, I can no longer see [Matthew's] face in my mind. When I think of him all I feel is contempt for the hospital and anger towards the doctors."

The findings of a review of cardiac surgery and death rates at Alder Hey between 1989 and 1999 are currently awaited. The review was commissioned by the NHS Executive in response to parents' anxieties about mortality rates which emerged from the organ storage controversy. The parents anticipate receiving the results by late September.

The hospital declined to comment pending the outcome of the inquiry and a series of lawsuits planned by parents.