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Behind the headlines
Joe's parents, Juliet and Dennis
'Death's not a taboo'
A mother talks about her difficult decision to allow her son's organs to be donated. Joe Harkness was 17 when he died after an accident in 1998. A pedestrian came out in front of him and knocked him off his bike causing a brain stem injury.
He and his family supported organ donation and because of his parents' decision, his heart, lungs, liver, kidneys and corneas saved five lives.
His mother Juliet said: "We agreed to any part of Joe because I felt his body was beautiful but his soul and spirit had left so it wasn't up to me to deny any part of his body. That wasn't how I was going to remember him."
Juliet was with her younger son, Felix, when two police officers arrived at her home to tell her Joe had been involved in an accident.
Although surgeons were unable to save him he was identified as a major donor because all his organs were intact and his heart was still beating.
"Of course it was terrible but later it was the long pause when you're approached by the donor coordinator, however once it was broached it wasn't any worse what we'd been through.
"It was what I expected and it wasn't that difficult for me, because I always knew what we were going to say."
Organ donation was a topic which Juliet and her family had talked about in the past and even though Joe was under 18 he carried a donor card.
Joe's portraits were painted by Juliet
While Juliet and her husband Dennis immediately agreed to any of his organs being used for transplant surgery, coming to terms with everything that had happened took longer.
"At the time you were in such a state of shock, the principles were there, I'd said yes in my head so it wasn't difficult in a sense."
Juliet was told all the operations had been successful, something she said "was such an amazing feeling".
She also received letters and photos from the donor recipients, but there was no pressure to accept them or get in touch with them.
"If it was too much for us, which at times is really hard to accept, that your child's organs are in another body, but in the end you want to know that they're alright.
"The cards and letters were so wonderful, just the gratitude, I mean ridiculous because I mean that it wasn't as if I ever felt that it was me that should be thanked, no way, but nevertheless it made you feel so much better."
The outcome of Joe's death and subsequent organ donation has left Juliet with a strong belief that this topic should be discussed more openly.
She believes that taboos should be thrown out of the window and for people to realise the importance of organ donation and how much reliance there is on the need to carry donor cards but still has reservations about presumed consent.
"I want it to be a positive thing and I think it errs on the negative side to say presumed consent.
"I don't like the idea that if it's presumed, something went terribly wrong and some organs were taken and someone got into a state about it, there are going to be cases like that if it's not like a gift."
This approach to organ donation is where everyone is automatically registered as organ donors unless they actively opt out, has been explored by the government.
The taskforce which researched this system gathered evidence from all over the world and found there was little evidence that it would increase the number organs available for donation.
For the time being the government has shelved this idea although it could be reconsidered in the future.
While Juliet and Dennis have been informed of the progress made by the donor recipients, she is in undecided about whether she would meet with any of them.
"It doesn't alter my feelings about Joe, and I don't think I would be spooked by that, maybe I would want to meet them.
"You surprise yourself about how much you change in that journey. You're never at the end of the journey, the grief is always changing so I would always keep an open mind about that."
Her feelings about the donation itself haven't changed from the day they agreed to the decision.
"How would I feel if a child of mine was dying of liver disease and someone had refused to give an organ? I would feel so desperate about that and I would give my kidney if it were any good, because you see the change in people and think how can you deny that possibility?"
last updated: 12/01/2009 at 12:59