My name is Liz, and my son, Simon, was an organ donor. I'm the donor family representative
on the organ donation committee at my local hospital, and I'm also a nurse.
Simon was my older son, the second of my four children. When he was 9 years old, in 1994,
he was knocked down crossing the road near our home. He had a serious head injury and
was cared for in the paediatric intensive care unit for 9 days. Eventually we had to
have the difficult conversation about turning off his life support.
Partly because of my background as a nurse, and partly for other reasons, we mentioned
organ donation to the doctors in PICU a few days after the accident. My older sister was
also a nurse, she's much older than me, and was involved in nursing the first recipient
of a kidney transplant in the hospital where she worked in London in the 1960s, so I suppose
organ donation has always seemed normal to me.
Simon used to enjoy watching a program on TV called 'How do they do that' and one
of the reconstructions did not end so well, organ donation was mentioned and he asked
what it meant. After I explained, he said that was cool and the ultimate form of
recycling! So we knew that it was what he would have wanted.
I also knew that one of the barriers to organ donation at that time could be the reluctance
of hospital staff, worried about seeming to be insensitive at a time when a family is
facing something awful. From my nursing experience, I could already see that Simon's chances
of surviving were slim and I didn't want the possibility to be missed that something
good might come from our loss.
But the doctors said that the focus at that time was of course doing everything possible
for Simon; they would note our wishes, but only come back to that if we had to, and hopefully
that wouldn't happen.
But it did happen, and after the tests had confirmed that Simon was brain dead, the fact
that we had already mentioned organ donation, did make it easier for them to introduce us
to the specialist nurse, and talk through the procedure.
We were able to donate both of Simon's kidneys, his lungs and his liver and also his heart
valves and corneas, so altogether 8 people were helped. Over the first few days and weeks
we had phone calls from the specialist nurse, telling us about the successful organ and
tissue transplants, and later we received letters from some of the recipients telling
us how much their lives had been improved. That feedback was a great comfort at a really
difficult time.
I got involved with promoting organ and tissue donation a couple of years after Simon died.
I was first invited to speak at a professional study day, to give the family perspective
on sudden child death. That was well received, and then I was invited several more times
to talk specifically about organ donation. I think the fact that I am a nurse anyway
meant that I could talk more easily to the professional audience, appreciate their point
of view.
I remember one talk was to theatre nurses; they find their role in the process difficult,
because the patient goes into theatre warm and pink, still being ventilated, looking
alive. But after the organs have been retrieved, of course they are then at the end of their
life, and leave theatre cold and pale. This is the opposite of any other type of operation
and seems all wrong to the staff. So I was able to reassure them that the role they play
is vital, for any good to come of the death of that person, that time is the operating
theatre is absolutely necessary.
Since then I have been interviewed for local newspapers, spoken on local radio, and also
appeared on a regional TV program.
More recently, after the NHS taskforce report in 2008 identified ways to improve organ donation
rates, the idea of each hospital having a committee came about. I was invited to attend
the inaugural meeting at my local hospital; I have been able to give the donor perspective
on all sorts of issues, and been closely involved in such things as the creation of our memorial
to past donors, and the sensitive and appropriate wording of the philosophy statement that is
displayed in our emergency department. This gently introduces the idea that organ donation
is a normal thing in our area and it may be discussed if all treatment options are exhausted.
An exciting new development recently was being on the interview panel to appoint a paid community
link worker to promote organ donation among the black, Asian and other minority ethnic
groups in our local area.
When I see the promotional banner in the hospital with a lovely picture of Simon, it makes me
smile. My other son, who is 21 now, took a photo of the banner and put it on his Facebook
page, saying ìthis is my brother, and this is something we all need to talk aboutî,
which made me very proud, and all the family feel proud of Simon.
Personally, I feel that so long as there is even one of the recipients of the donated
organs or tissues alive and well, Simon's legacy goes on. Through this, he is as alive
to me today, he would be 28 now - as the other 3 children who are now aged 30, 21 and
19.
I will carry on campaigning because I believe that organ donation should be accepted as
being perfectly normal and something that we can all discuss. I appreciate that some
people find it difficult, but you just have to decide what you would like to happen, join
the register, tell your family and then get on with the rest of your life.