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."Reuse content