Jan Robinson

I have been asked to speak today about post mortem examinations from a family's perspective.

Perhaps I could introduce myself first - my name is Jan Robinson and I am a non executive member of the Retained Organs Commission, I am Treasurer to the parent support group PITY II, but most importantly I am the parent of a little boy, Michael, who had all of his organs retained after his post mortem at Alder Hey hospital.

My first contact with the issue of post mortem examination was back in September 1985 when my mother died. She had been in hospital for six weeks prior to her death after undergoing what was supposed to be a straightforward operation. Although her operation was deemed to be successful her condition unfortunately deteriorated.

I was called to the hospital on a Sunday afternoon and I stayed there until she died three days later.  I had virtually no sleep during that time.

Approximately 30 - 40minutes after my mum's death I was approached by the Consultant and a member of the nursing staff, who asked for permission to conduct a post mortem

I was in the corridor literally no more than 10 feet from where her body lay and also in full view of the other five occupants of that small bay of beds.

At that time I could not face the thought of anything else happening to her - I felt she had been through enough. I was too distressed and too tired  - I could not think properly. My first reaction was to say no, I knew that my mum would not have wanted a post mortem examination - she had been very distressed 15 years earlier when her own mother died and had had to undergo a Coroner's post mortem. I also knew that she was frightened of death and everything that went with it. I felt at that time I had made the right decision.

My second contact with post mortem examinations came 3 ½ years later when my youngest son, Michael, died quite suddenly.

Michael had been born on Christmas day 1988 and was transferred the next day to Myrtle street children's hospital in Liverpool -he was quickly diagnosed with multiple heart defects. We were allowed to take him home 10 tens later.

Michael was again admitted to hospital on May 1^st for a scheduled catheterisation and was released on Friday May 5^th. He was unwell and we took him back to hospital just after midnight the following Tuesday.

Michael suffered a cardiac arrest and although he was resuscitated and put on a life support machine, he sadly died at 8.15pm on Wednesday 10^th May 1989. I cannot describe to you how we felt.

The next day we were contacted by the Coroner, who advised that because Michael had died so suddenly there would have to be a post mortem examination - this added to our distress -- he was 4 ½ months old when he died and we could not bare the thought of anything else being done to him. He had been through so much.

The coroner was extremely sympathetic and came across as a very caring man. It was explained to us that it would help establish why he died. We were told that Michael would be transferred to Alder Hey and that the post mortem would take place the following day. We were told he would be cared for.

We placed our confidence in this man. We also placed the care of our son with this man. Like him we needed to understand why Michael had died.

We received news of the post mortem result; Michael had apparently died from septicaemia. We were absolutely devastated but at least we knew the reason why.
It was the worst time in our lives but we were grateful that Michael had been cared for and then returned to us so that we could lay him to rest.

In September 1999, I read a small article in a newspaper about a mother whose child's heart had been retained. This caused alarm bells to ring but it took me ten days before I had the courage to mention it to my husband. He had also heard similar stories but because he did not want to cause me concern he had not mentioned it to me.

After some discussion we decided that he would contact the hospital to see if Michaels heart had been retained.

Six days later we received the call that was to have such a catastrophic effect on our family's life.

Not only had his heart been retained  - we were later informed that all of his internal organs including skin and muscle had also been retained. We were absolutely devastated. Again it is difficult to describe how we all felt on receiving that dreadful news.

One of the first things that we did the day after hearing the news was to contact the Coroners office. The Coroner had ordered the post mortem examination he surely would know why and what the pathologist had retained

The Coroner who had ordered Michael's post mortem examination had retired four months previous.  To our dismay not only did the new Coroner not know about the retained organs - there was not even a copy of Michaels post mortem report in the Coroners office.

The previous Coroner had been so concerned at Michaels sudden death that a post mortem was ordered but he was not concerned enough to ask for a full post mortem report. We could not believe it.

The only paperwork they had was two scraps of paper no bigger than a telephone jotting pad. That is how important our son's death was to that Coroner.

A copy of the post mortem was sought from the hospital but unfortunately part of it was completely blank. There is no evidence of either an internal or external examination of our son. There is no evidence of any histology having been done. How could the pathologist have come to a true cause of death when he did not conduct a proper post mortem examination?

There is no mention of the fact that all of Michael's organs had been retained. There is no mention of the fact that Michael's heart had been taken, without our knowledge or consent, to be placed as a museum exhibit in the Institute of Child Health. There is no reference to his museum number.

We felt that Michael and ourselves had been betrayed.

How glad I was that I had not given permission for a post mortem to be conducted on my mum all those years before.

Our consent to the retention of all of Michael's organs was never sought and never given. We felt that the whole process had been taken out of our hands and that we as Michael's parents were not worthy of consideration

We have heard so many times since about the importance of post mortem examination and that so many benefits can be derived from the post mortem process. We do not dispute this. Yet nothing and nobody benefited from what happened to Michael or all the other children and babies who had their organs retained. Our families have not benefited, medical science has not benefited, the public has not benefited. Nothing was gained from what happened to our children.

Since becoming involved in organ retention issues I have learnt so much about post- mortem examinations and pathology.

Only a few months ago, when talking to a pathologist about Coroners Post-mortems I was staggered to discover that he did not know the difference between section 19 and section 20 of the Coroners rules or what is required under Rule 9, yet on a weekly basis he was conducting post mortem examinations on behalf of the Coroner.

This surely has to change

We have accepted that we cannot change what happened to Michael and all the other children and adults who have had organs retained without consent or knowledge of their families, we cannot re-write history - but we want to make sure that changes are made so that it cannot happen again.

Some of the people who can make those changes happen are sitting in this room today.

Medical students must be educated and trained about what happens at post mortems and seeing as the majority of post mortems that take place are at the request of the Coroner they also need to know what is legally required of them.  Medical students and other healthcare professionals must attend post mortems as part of their training. They must have training to help them deal with bereaved families sensitively. How else can we expect them to gain informed consent from relatives for post mortem examinations if they do not have the knowledge themselves? How else can they have the confidence and ability to deal with newly bereaved families? We need to equip them fully to enable them to face the challenges that will confront them.

We know that a large part of the work of Pathologists is diagnosing disease and illness in living patients. This is undoubtedly a vital work and nobody would question or deny that families are grateful for that.

We also know that post mortem examinations have to be conducted so that a cause of death can be established and so that families can be given information which may impact on their own and their children's future well being.   We just ask that this be done with genuinely informed consent.

Families have been accused of wanting to stop research - THIS IS NOT TRUE -this is a misconception - from my direct experience of talking to many families involved in this issue none have ever expressed that view, in fact many had offered their children's organs to be used to help other children but their offers where declined.

Many have expressed the view that they just wanted to be able to make the choice. Fundamental changes in the system need to be made for them to have any confidence in the post mortem process again.

As I said earlier I cannot change the past, you cannot change the past but as professionals involved in this work you can change the future, I would ask you today to accept the challenges that your profession faces, willingly make the changes that are needed and work towards re-gaining the trust and confidence of the Public.

Only then will families involved in this issue feel reassured that what happened to their relatives will never happen again.
Jan Robinson

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