Hospital Scandal: Why did this man... think it was right to butcher these babies?

Doctors think it's fine to use organs from dead children for research and training; grieving parents are horrified. The gulf between public expectation and medical practice has never been wider

Professor Dick van Velzen believes he has done nothing wrong. The man accused of removing hearts and other organs from hundreds of dead babies without the parents' permission is distressed at being portrayed as a villain. "I am nothing of the sort," the Dutch pathologist said yesterday from his home in the Netherlands. "I have dedicated my life to helping children."

The outraged members of Pity2 (Parents Interring Their Young for the second time) would not agree. On Friday they formed a new alliance of people all over the country who have recently discovered that doctors took hearts or other organs from their dead babies without their consent or knowledge. No doubt they will have plenty to say to Professor van Velzen if they take up the offer he made yesterday to meet. In the meantime, their protests have highlighted a huge difference in attitude and assumptions between ordinary people and the medical profession.

Professor van Velzen is an expert in cot-death syndrome who worked at Alder Hey hospital in Liverpool from 1988 to 1995, leading a team that carried out post mortem examinations. He said he removed 30 or 40 hearts or lungs from children every year, but insisted the parents had signed consent forms. The organs were kept in jars in the laboratory to be used for research, he said, but the money ran out. "There weren't enough funds. We had one microscope between three of us. So the organs piled up."

His activities are now being investigated after 850 organs were found in a laboratory store at the hospital. Alder Hey has a collection of 2,087 hearts taken from children over the past 40 years, and there are at least another 9,000 hearts in storage at other hospitals around the country. In many cases the parents are unaware that their child has been buried incomplete.

The Chief Medical Officer, Professor Liam Donaldson, is heading an inquiry into the retention of 11,000 hearts in hospitals across Britain. "There is a big difference between what over the years has developed as a practice within the health service, and what public expectations and concerns are," he said. "We need now to bring these two things together."

There are three ways in which a baby's heart can end up in a storage jar at a research hospital. The first is if the parents give consent for a post mortem by signing a form that says "tissues may be retained" for diagnosis, research or teaching purposes. The problem is that relatives may be too distraught to understand what they are doing, or that the forms themselves may not be clear. While the bereaved may take the word "tissues" to mean something as innocuous as skin samples, for example, the medical profession understands it to encompass internal organs, including the heart and brain. "The present arrangements for signing forms and giving permission are not adequate," the Chief Medical Officer admitted yesterday. "People don't understand the full implications."

Second, in certain cases a post mortem may be requested by the local coroner, in which event no parental permission is needed at all. Once organs have been removed from the body at autopsy, they may be passed on for research in the assumption that permission has been given.

The third possibility is that organs are removed "under the auspices of the coroner without the coroner's knowledge", as the Chief Medical Officer said yesterday. The possibility that this "highly unusual" situation occurred at Alder Hey is now the subject of two investigations, in addition to Professor Donaldson's nationwide inquiry. The hospital authorities are carrying out their own internal inquiry, and an external one was announced on Friday by the Secretary of State for Health. A panel of three people, including a lawyer, a pathologist and a patient, will report by March.

Joan Wheeler, the new chair of Pity2, is demanding more. "We want to know why my son's organs were sitting there, and all the others, what they were used for, and why we weren't told about it. We were never consulted, never told, had no idea - kept completely in the dark."

The parents are calling for the inquiries to be public from the beginning, whereas the Department of Health is understood to believe that those giving evidence will be more frank if they can do so privately. The parents also want new legislation so that nothing can ever be removed without permission. "There is no law," said Mrs Wheeler. "We want it to be a criminal offence for anyone to take organs without the express, informed consent of the parent or next of kin."

Such a move would not clarify the deeper issue of who has responsibility for the remains of a dead child. Parents naturally feel the need to retain as much control as possible over what happens to the bodies of their offspring, and many of those who have recently had organs returned to them have told of their distress at having to effectively bury their child for a second time, coupled with the relief that they finally could. But despite public horror at the emerging details of what happened at Bristol Royal Infirmary and Alder Hey, many doctors continue to argue that the possibility of saving lives through the advancement of medical science gives them a moral right to use organs for research.

Janet Valentine, whose daughter Kayleigh died after open-heart surgery at Alder Hey in 1990, aged four and a half months, said: "I feel I've let Kayleigh down because a mother always tries to protect her child. Even though she's dead, that's what I'm trying to do - to protect her memory."

Mrs Valentine insisted she told the ward sister she did not want any of Kayleigh's organs removed, and that she gave no permission. "We accepted that there had to be a post mortem for the inquest but until recently I had no idea that they had removed any organs or kept them in storage," Mrs Valentine said. "Those organs have just been sitting in Alder Hey for nearly 10 years. Why? What have they gained from doing that?"

Last week the Liverpool coroner, Andre Rebello, said he had been informed since taking office in July that in Kayleigh's case "the entire contents of the body - the head, thorax and abdomen - were removed". Mr Rebello suspected that the law may have been broken if the organs were removed without the consent of his predecessor, who has since retired.

The medical argument for removing and retaining organs was presented at the public inquiry into the Bristol heart surgery scandal in March by Professor Robert Anderson, who is responsible for the 2,000 hearts stored at Great Ormond Street. The knowledge gained from such libraries of human organs had led to major developments in the treatment of congenital heart disease. "The advances we have made would not have been possible had we not retained the hearts and had we not built up these collections."

Professor Anderson was convinced doctors in general had been "morally correct" to retain the organs. "If every parent said, 'We want the hearts back' we would not be able to train the next generation of paediatric cardiologists."

His words pinpointed another major difference between bereaved relatives and doctors. Those parents who agree that a post mortem is necessary to determine the cause of death, and who are even happy to donate organs for research in the possibility of saving another child, may be distressed by the idea of their baby's heart being stored for long periods of time and used as a training tool for medical students. As things stand, that's tough. They have no say in the matter. Once organs have been extracted by a pathologist and allowed to enter the NHS system, they become the property of the medical profession.

Ian Cohen, the solicitor representing 70 of the families in dispute with Alder Hey, said last week that some might consider taking legal action. A civil court was likely to find that consent forms gave the right for organs to be retained for the duration of a post mortem and no longer, he said.

In other cases no such forms had ever been signed. "The children's deaths may have been unavoidable, but what's happened afterwards seems to have been avoidable," he said. "Some of these children were buried with virtually no organs, and these parents just can't deal with it."

Have you tried new the Independent Digital Edition apps?
Life and Style
ebookNow available in paperback
ebooks
ebookA delicious collection of 50 meaty main courses
News
i100
News
Bobbi Kristina Brown, daughter of the late singer Whitney Houston, poses at the premiere of
people
News
people
News
The frequency with which we lie and our ability to get away with it both increase to young adulthood then decline with age, possibly because of changes that occur in the brain
scienceRoger Dobson knows the true story, from Pinocchio to Pollard
Voices
The male menopause: those affected can suffer hot flushes, night sweats, joint pain, low libido, depression and an increase in body fat, among other symptoms
voicesSo the male menopause is real, they say, but what would the Victorians, 'old' at 30, think of that, asks DJ Taylor
Life and Style
health
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating
and  

By clicking 'Search' you
are agreeing to our
Terms of Use.

SPONSORED FEATURES

ES Rentals

    iJobs Job Widget
    iJobs General

    Recruitment Genius: Project Assistant

    £17000 per annum: Recruitment Genius: They are a leading company in the field ...

    Recruitment Genius: DBA Developer - SQL Server

    £30000 - £35000 per annum: Recruitment Genius: This is an exciting opportunity...

    Recruitment Genius: Office Manager

    £26041 - £34876 per annum: Recruitment Genius: There has never been a more exc...

    Recruitment Genius: Travel Customer Service and Experience Manager

    £14000 - £17000 per annum: Recruitment Genius: The fastest growing travel comp...

    Day In a Page

    Turkey-Kurdish conflict: Obama's deal with Ankara is a betrayal of Syrian Kurds and may not even weaken Isis

    US betrayal of old ally brings limited reward

    Since the accord, the Turks have only waged war on Kurds while no US bomber has used Incirlik airbase, says Patrick Cockburn
    VIPs gather for opening of second Suez Canal - but doubts linger over security

    'A gift from Egypt to the rest of the world'

    VIPs gather for opening of second Suez Canal - but is it really needed?
    Jeremy Corbyn dresses abysmally. That's a great thing because it's genuine

    Jeremy Corbyn dresses abysmally. That's a great thing because it's genuine

    Fashion editor, Alexander Fury, applauds a man who clearly has more important things on his mind
    The male menopause and intimations of mortality

    Aches, pains and an inkling of mortality

    So the male menopause is real, they say, but what would the Victorians, 'old' at 30, think of that, asks DJ Taylor
    Man Booker Prize 2015: Anna Smaill - How can I possibly be on the list with these writers I have idolised?

    'How can I possibly be on the list with these writers I have idolised?'

    Man Booker Prize nominee Anna Smaill on the rise of Kiwi lit
    Bettany Hughes interview: The historian on how Socrates would have solved Greece's problems

    Bettany Hughes interview

    The historian on how Socrates would have solved Greece's problems
    Art of the state: Pyongyang propaganda posters to be exhibited in China

    Art of the state

    Pyongyang propaganda posters to be exhibited in China
    Mildreds and Vanilla Black have given vegetarian food a makeover in new cookbooks

    Vegetarian food gets a makeover

    Long-time vegetarian Holly Williams tries to recreate some of the inventive recipes in Mildreds and Vanilla Black's new cookbooks
    The haunting of Shirley Jackson: Was the gothic author's life really as bleak as her fiction?

    The haunting of Shirley Jackson

    Was the gothic author's life really as bleak as her fiction?
    Bill Granger recipes: Heading off on holiday? Try out our chef's seaside-inspired dishes...

    Bill Granger's seaside-inspired recipes

    These dishes are so easy to make, our chef is almost embarrassed to call them recipes
    Ashes 2015: Tourists are limp, leaderless and distinctly UnAustralian

    Tourists are limp, leaderless and distinctly UnAustralian

    A woefully out-of-form Michael Clarke embodies his team's fragile Ashes campaign, says Michael Calvin
    Blairites be warned, this could be the moment Labour turns into Syriza

    Andrew Grice: Inside Westminster

    Blairites be warned, this could be the moment Labour turns into Syriza
    HMS Victory: The mystery of Britain's worst naval disaster is finally solved - 271 years later

    The mystery of Britain's worst naval disaster is finally solved - 271 years later

    Exclusive: David Keys reveals the research that finally explains why HMS Victory went down with the loss of 1,100 lives
    Survivors of the Nagasaki atomic bomb attack: Japan must not abandon its post-war pacifism

    'I saw people so injured you couldn't tell if they were dead or alive'

    Nagasaki survivors on why Japan must not abandon its post-war pacifism
    Jon Stewart: The voice of Democrats who felt Obama had failed to deliver on his 'Yes We Can' slogan, and the voter he tried hardest to keep onside

    The voter Obama tried hardest to keep onside

    Outgoing The Daily Show host, Jon Stewart, became the voice of Democrats who felt the President had failed to deliver on his ‘Yes We Can’ slogan. Tim Walker charts the ups and downs of their 10-year relationship on screen