email PITY II

"My name is John O'Hare. I am a committee member of PITY II parents' support group, and I am here to represent all of the parents involved in the Alder Hey Organ Retention scandal.

The one common factor between us is that we have all suffered the most painful loss, the loss of a child. In some cases the pain is twice and even three times as much to bear, as some parents have lost more than one child. The second similarity is that we have all learnt that our children's organs have been removed and retained at post mortem examination without our knowledge or consent.

We are led to believe that this practice has been taking place since 1947. We have parents in our group who are revisiting the painful grief of 40,30,20 years ago, and indeed as recently as 1999. Among our parents are people who categorically stated that they did not want their children to have post mortems. Some parents consented to limited post mortems, and some were coroner's post mortems. In all cases, permission to retain an organ was not sought from the parents. There were some parents who actually offered their children's organs and were told that they could not use them.

Now every parent had discovered that regardless of agreement or disagreement, the pathologists took away and retained the organs anyway.

The children involved range from foetuses, new-born babies, and every age group up to and including teenagers. The organs were taken from children who had been suffering from a wide range of diseases and also children who died as a result of accidents and cot death. Organs from children who died in other hospitals also ended up in Alder Hey.

Parents feel betrayed by the medical profession in general, and more particularly by pathologists. We appreciate that this practice has gone on all over the country but it appears that even some pathologists have found the extent of organ removal and retention at Alder Hey, especially between the years of 1988 to 1995, extraordinary.

The remains of 845 children were discovered in the basement of a building in Myrtle Street. These included both hospital and coroners post mortems. Alder Hey's own internal inquiry report states that 587 of those cases had all four sets of organs retained including reproductive organs from both boys and girls. Besides this 2087 hearts were in the Institute of Child Health along with other organs, tissue and foetuses.

Parents also feel that Liverpool University has been less than open or frank about their involvement, and has added to the grief. It is documented that one of their employees allowed a student to carry out research on the cerebella of 146 children, 58 of whom had already had second burials, which meant that some parents have had to have a third burial. Then it was disclosed that some children's eyes had been removed and retained for study into glaucoma involving some parents in a fourth burial.

All this without the knowledge or consent of parents.

Lessons should be learnt so that when people find out that they are involved with organ retention they should be dealt with in an understanding, sensitive and compassionate manner. And they should receive prompt and truthful answers to their questions, which has not always happened at Alder Hey.

The repercussions of the organ retention have had far reaching implications for many families, especially for siblings, some of whom are learning of brothers or sisters who have been locked in the minds and hearts of their parents, but have been unknown to them personally. As a result of this scandal all of them have been affected in some way.

One overriding emotion we all have is the pain caused by the lack of respect and dignity shown to our children. We feel most strongly that measures should be put in place so that what has been done to our children should never be allowed to happen again.

Guidelines are not enough. It has been proven that they have been ignored. Self-regulation by the medical profession has been shown to be inadequate. We must have changes in the law that will cover both hospital and coroners post mortems with clear concise rules and directives that are enforceable in law and that are designed to ensure that what has happened to our children cannot be repeated in the future.

I apologise if I have missed anything out but I have tried to include as many parents' concerns and situations as possible in the 5 minutes allotted."