Renate Greinert's Story

My son Christian was 15 years old when he had an accident on his way to school. His heartbeat stopped and the doctor on emergency call reanimated him with electroshock. A rescue helicopter took him to Hanover Medical University.

The doctors left us in no doubt that Christian was severely hurt and there was little hope of his survival. Nevertheless I still hoped that his life was being saved by a miracle. Christian didn't seem to be badly hurt, there were just a cut at his lip, a grazed cheekbone and another graze on his forehead. His wounds weren't covered and had stopped bleeding. Christian seemed to be fast asleep. He breathed with the help of a respirator, and there were different monitors displaying diagrams around his bed. At his bedside we could see a catheter filling so fast that it had to be replaced by a bucket. The upper part of his body was not covered and seeing him like this made me feel cold inside. Gently I touched his arm. Christian was warm.

I thought that all the treatment was meant to help my child. But I was wrong. The doctors tried to keep him alive in order to save other people's lives with his living organs. He was not being treated for his own benefit but for the benefit of others. They had prevented him from dying because only living organs can be transplanted successfully. The abundance of infusions, they had to give him in the beginning to prevent him from dying on the way to the hospital, had to be irrigated so that they would not harm the organ recipients. The doctors' biggest worry was to prevent him from dying before the organ retrieval. Some time later they asked us to leave the room as they wanted to make an electro-encephalogram. Apart from that they were waiting for a team of neurosurgeons we were informed. Instead of the expected 20 minutes, the encephalogram took one and a half hours. There is nothing in the files about an electro-encephalogram, but instead of this an electro-cardiogram. We did not see any neurosurgeons although there is a protocol of two neurosurgeons in his file at that particular time when we were waiting outside the sick-room. Instead of the neurosurgeons the emergency ward came and explained to us Christian was "dead and clean from barbiturates" and that we would be asked about organ donation and he was telling us now so that we could begin to think about it. That was all. The world stood still for me. The past was gone, the present moment unbearable, there was no future.

They showed us into a small dark room, lit only by streetlight and the lamps from the corridor. We were waiting there motionless, frozen in horror. All at once the assistant medical director came, "Surely Christian was socially-minded?" Was he? I couldn't tell this moment. "There are other children bound to die if they don't get a new organ in time." I was petrified with horror and my only thought was, "It's over." The doctor urged us to consent as there were other parents being as desperate as we sitting at the bedside of their children but we were able to help them! I didn't want anyone to die neither my child nor any other children. I was unable to answer. My husband decided the matter, "If we could help what would they take".

"Either heart or liver or kidneys, maybe cartilage." I could not think properly and didn't realize that organs can only be retrieved in an operation. We had to abandon hope. We were separated form our child, could not hold him and had to let go of him. We had to say goodbye to him forever while he was still treated while he was warm while the monitors were on and while he was given infusions. I failed to see that he was "dead", but believed in what the doctors said and trusted them.

After five days Christian was transported to Wolfsburg. I needed to see him for the last time, feel his presence, touch him, delaying for a moment the endless time, afterwards, without him. The undertakers had warned us that he might look very much altered. I didn't understand what they meant at the time. Did he look ugly? I didn't mind because when he had chicken pox his face was so swollen I could hardly recognize him. Nothing could stop me. The following morning I was told Christian would be in the small chapel of our cemetery. When I arrived there a cemetery attendant was about to disappear behind the next corner. Reluctantly he came back. When I urged him, he opened the coffin. There Christian was lying - deadly pale, as cold as a stone, not moving. Though I hadn't seen a dead body before there was no doubt that he was dead. There was a cut from his chin to the neckline of his shirt, he had no eyes. My child looked like a drawn goose.

What had we given our consent to?

Having looked through the medical report I learned that they had retrieved his heart, liver, kidneys, and eyes, and they had even removed his pelvic bones and sold them. Our consent to the removal of one organ had been changed into a multi-organ removal without asking us. The last sight of my child burnt itself into my soul. When I think of him I have to fight the horrible impression that he was looking so undignified and exploited. This sight of my son still haunts me in my dreams.

But there was something else that worried me afterwards. How could it be that my son was dead while he looked alive and was treated as a living patient? Neither he nor his treatment had changed.

In his medical report I found three different death notices: the first at 17.00 hours, when they diagnosed his brain death they declared as death. The second death notice was documented after the retrieval operation, and the third one a day after. How often can a human being die, how many deaths can he die? I thought there is only one death.

I heard the word "brain death" the first time. And it was difficult for me as a non-professional to learn about the meaning of brain death. It is also named "death of the person" or "death of the individual". If you think it means that a person or individual has died you are wrong. It only means that the personal or individual aspects of a human being are out of order. The autonomy of the control systems has failed. Dying is a process, not a dot-like event. A brain dead person is about to die. There is no way back to life. Brain death is a definition of physicians to call someone dead when the brain fails. Only on condition that a person is declared dead they can legally remove living organs while the respirator is still on.

Maybe you don't understand what I mean. Maybe you think that he would have died anyway, why couldn't they make use of him? That's not my point. What I want to make clear is that dying persons are not dead. There is some life ahead of them which they have to complete. Mental and spiritual processes are still going on. A human being needs his own death like a ship needs a floodgate to get into different waters safely. My child did not have the chance to die in this way, instead the ship of his life was sunk abruptly. What a traumatic death he had to suffer after the transplant surgeons had broken him up! My son was a human being, an individual - and no object and even less recycling material.

Renate Greinert

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