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Monday, 29 January, 2001, 08:49 GMT
Organ scandal background
Organs were retained
Organs were retained at the hospital without consent
The scandal at Alder Hey Children's hospital centres on the retention of hearts and organs from hundreds of children.

The organs were stripped without permission from babies who died at the hospital between 1988-1996.

Hospital staff also kept and stored 400 foetuses collected from hospital around the north west of England.

The findings of an inquiry into the affair have been described by Health Secretary Alan Milburn as "grotesque" and helplines have been set up to deal with calls from distressed parents.

The first organ scandal broke in Bristol in 1998 when it became clear that staff at the hospital had been keeping hearts following surgery at the hospital.

The scandal at Alder Hey emerged almost accidentally when heart specialist Professor Robert Anderson revealed at a separate official inquiry into heart surgery at Bristol that a store of children's hearts was kept at Alder Hey.

And in September it was announced that Birmingham's Diana Princess of Wales Children's Hospital and the Alder Hey Children's Hospital, in Liverpool, had been harvesting organs and tissues from the babies who died at their hospitals.

The same two hospitals that last week were caught up in the cash for tissues row, which revealed that both the Birmingham and Liverpool hospitals had given Thymus glands, removed during heart surgery from live children, to a pharmaceutical company for research.

They then received cash donations from the company involved.

It became apparent that organ harvesting at Alder Hey had been such an established practice that even parents whose children had died decades ago found that organs had been removed before the bodies were released to the families.

And worried parents who had not given consent for their childrens' organs to be used jammed Alder Hey hospital's switchboard demanding to know whether their child was involved.

It now appears that even when the hospital told parents that organs were missing from the bodies of their dead children that some parents were still not given the whole truth.

In some cases parent had organs returned to them for burial only to face the agony of another funeral just months later when another organ or piece of tissue was returned.

Some are still waiting to find out what organs and tissues the hospital still have.

One mother Janet Dacombe has had three funerals for baby James after bosses at Alder Hey returned her tiny son's bodily organs gradually.

Distraught already by tragedy the repeated revelations were an extra burden.

"We thought that we had a Christian burial, but found that they had kept a lot of his organs.

"I was really annoyed that we had to have the third funeral," she said.

Annette Grimes from Liverpool found that the baby she thought she'd buried whole 40 years before was buried without his heart, lungs and oesophagus. She is still waiting to find whether the hospital has any more of his organs.

In total the hearts of 2,080 children's hearts and the organs of more than 800 children were kept at Alder Hey along with 400 foetuses collected from hospital across the region.

Kept organs

Ann and Tony Darracott, whose five year old son Phillip died 12 years ago were devastated to be told that the hospital had kept his heart, brain and abdominal organs.

"It didn't seem right a heart belonging to my child could be part of a collection like butterflies, or insects, something to be visited and looked at," said Ann.

Other parents complained that they had not given permission for their children's organs to be taken.

But some said that if asked they would have donated some organs for research or transplantation if it was to help other sick children.

Organ research

Professor Dick van Velzen, the pathologist at the centre of the Alder Hey scandal admitted using some organs for research purposes, without the permission of the coroner or the consent of parents.

Tuesday's report is also expected to reveal that he also kept the head of a child stored in a jar.

He blamed the hospital for the practice of organ stripping, saying that he removed and stored the organs of 845 children because he did not have the resources from the hospital to carry out detailed post mortems and claimed that he had always hoped to complete them one day.

It didn't seem right a heart belonging to my child could be part of a collection like butterflies, or insects, something to be visited and looked at

Ann Darracott

Just a month after the revelation of the organ retention in October 1999, the then Health Secretary, Frank Dobson ordered an investigation into the retention of body parts for medical research.

Mr Dobson said the Department of Health would be working closely with the Royal College of Pathologists to produce new guidelines clarifying what relatives had agreed to when they give permission for a post mortem.

Their guidelines came out in March last year and called for full consent from relatives before a post mortem examination is carried out, and before organs and tissues are retained, either to determine the cause of death or for medical research.

Key findings of Royal College of Pathology guidelines
Improved training for personnel seeking permission for post mortem examinations
Consent obtained from relatives
Relatives to be fully informed of what is likely to be retained and the distinction made between organs and tissue samples
Unless agreement that the tissues and organs can be used for teaching and research, hospitals must give relatives the chance to dispose of them as they wish

The BMA issued its guidance in October last year telling doctors to be more aware of relatives' feelings when asking to keep body tissues.

And in December 1999 the government announced that it would be holding a public inquiry following the revelations that other hospitals around Britain had also been retaining organs.

The hospital also launched its own internal investigation and the case was reported to the General Medical Council (GMC).

The GMC will be closely monitoring the Government report and are expected to hold a hearing themselves into Professor van Velzen, which could result in him being struck off the medical register.

Asking parents

Earlier this month Professor Liam Donaldson, the Chief Medical Officer, told distressed parents that he would be backing a change in the law to ensure that hospitals could never again retain organ's without permission.

The Human Tissue Act (1961) makes it clear that doctors cannot make a decision themselves on whether to keep organs unless the patient is a child who has died after a pregnancy lasting less than 24 weeks.

Otherwise they must make reasonable enquiries of parents and relatives.

Coroners in England, Wales and Northern Ireland have the power to authorise a special post mortem into a body where there is some doubt as to the cause of death.

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