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. …