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The Newall family - donor and recipients
It’s 1983 and an 8 year old me clad in typical 80's attire is playing outside my grandparents' Coventry home. I am confused and quite frankly in awe. You see my Grandad, blinded by cataracts and other complications, has just received his second call to say a cornea had become available should he choose to undergo the operation (– which, in those days, was still quite a new and pioneering procedure).
We found ourselves in a similar situation the year before; only at that point the significance of what was happening didn't really hit home - and the latest accessory for my Sindy doll's house seemed an altogether easier thing for my little brain to focus on! That graft sadly failed.
This time it was different; my Grandad was receiving a cornea... from someone who had died? This somewhat mythical person had actually THOUGHT about wanting to help my Grandad BEFORE they died? What about their family? Weren't they sad? Did they not mind that their loved one was donating their cornea to my Grandad? ....Thus began my fascination with the concept of transplantation and donation.
We were told that in fact this time, the donor was a young, male motorcyclist who had lost his life in an accident. Not only had he given my Grandad his sight back - and given ME my old Grandad back, but he had probably gone on to give the gift of life to many more people and helped even more again. At this point I decided I, too, wanted to help others, if at all possible, after my death.
2008 and a 30-something me chances upon a news item on Channel 5 News. A young, terminally ill journalist called Adrian Sudbury is using his final days to encourage people to donate not only organs after their death – but also to donate bone marrow and give blood. Adrian had been lucky enough to receive a life-saving bone marrow transplant as part of his treatment for leukaemia, but sadly, the leukaemia had returned.
He knew many people remained on the waiting list for a transplant because there are simply not enough donors. The phrase “bone marrow donation” strikes fear into the hearts of even the most hardy folk, conjuring up images of the breaking of bones and drilling of spines. Adrian began his mission to challenge these misconceptions by petitioning government that all sixth-form pupils should automatically receive a presentation all about bone marrow, blood AND organ donation. This would arm them with the facts to enable them to make an informed decision – and hopefully encourage them to become genuine lifesavers both during and at the end of their lives.
All this time, Adrian was being sustained throughout these final days by many blood transfusions – giving him vital time with his family and re-affirming to many of us that blood is used to treat many illnesses as well as being used in A&E units up and down the country. He realised that blood donation is often overlooked where other forms of donation are being discussed. I would later become acutely aware of the very lifesaving valuable gift of blood – which I will come to later!
The news item on Adrian lead me to his award-winning blog, which literally changed my life. His writing cemented my views on organ donation, prompted me to want to encourage others sign up to do likewise and brought back a few emotions to the fore. Significantly though, I personally learned that bone marrow donation, contrary to all the popular myths, is not a painful and dangerous procedure. These days in 75% of cases a person can donate via a cell separator machine a procedure not a million miles removed from donating blood. You or I could be someone’s one in a million – a tissue match, a person’s only chance of survival. I could not only save lives AFTER my death, but right now, too – potentially. I already donated blood – and resolved to do this with a new enthusiasm and commitment, but now asked that my name be added to the British Bone Marrow Registry as a potential donor.
March 2009 and with limited funding in place, Adrian’s dream of training an army of volunteers to take the message about all types of donation into schools moves a step closer. Sadly Adrian lost his battle with leukaemia in August 2008, but his campaign gathers strength and has become more strategic. I attend an initial training day in Sheffield and learn how to put together and deliver my own personal 40 minute presentation. “Register & Be a Lifesaver” - or simply “R&B” is born. (To find out more about Adrian's campaign please visit 'Baldy's Blog' at: ['Baldy's Blog' web link] and the Anthony Nolan website at: [Anthony Nolan R&B campaign web link]
June 10th 2008 sees a very nervous 30-something me standing in front of a class of teenagers delivering my first ever presentation. What an incredibly emotional, powerful experience it was too. I never “got” why people actually chose to become teachers, but to see these young people transfixed and become emotionally involved with my talk was magic. The interaction and feedback was most encouraging. I would love to think that in some small way, what I have said may have gently nudged some students towards actively signing up as a donor. The words flew out of me and I was surprised by how easy it was to talk about a subject so close to my heart.
August 2009 and my summer is flying by, in spite of the usual dreary weather! I have a few talks under my belt by now. Out of the blue, my phone rings at 5.30am one morning. My dad was in fact already in hospital undergoing tests, but had seemed stable. This was the call to say he had taken a turn for the worse. Basically, my dad was suffering severe abdominal haemorrhaging and his prospects were not looking good.
I arrived to find myself caught within a scene which could’ve been straight out of Casualty - alarms going off, medical staff rushing round working on my dad and doctors shouting “could you cross-match another 8 units of blood”. They were, in fact, literally pumping unit after unit of blood into him, just to keep him alive. The irony about my involvement with R&B didn’t escape me - that WE were now that family in need of blood. The thought did cross my mind; this was an unexpected emergency, would there actually be enough blood there to treat my dad - as another zip-up cool bag of more units arrived from the hospital’s blood bank.
We stood round the bed with the fantastic medical team. We had to reach a consensus as to whether it was worth operating on my dad – he’d survived against all odds thus far, so he was rushed down to theatre. He had an emergency colectomy and one of the lovely nurses later told me that he’d received 18 units of blood and an additional 4 units of platelets to help with clotting during those dramatic events. Given that it usually takes one donor to produce one unit of blood (or red cells, to be exact) but up to 4 individuals to produce a single adult dose of platelets, my limited arithmetic leads me to a figure of 34 donors.
34 ordinary people helped save my dad’s life – they’ll never know what they did for our family. Obviously, the skill and dedication of the medical staff made it happen, but I cannot begin to say how grateful I am to those donors or how desperate I felt to go and give blood again as soon as possible! The fact that they took time out to go and donate (which, as I see it, involves lying down, looking away and thinking of England while they do the “needley bit” - then eating shed-loads of biscuits and feeling rather good about oneself afterwards) - means I still have my dad around.
My work with the R&B campaign has lead me to meet many wonderful people, with heart-warming stories as to how the courage, altruism and generosity of people and their families has lead to the wonderful gift of life. My dad recently had his life saved by 34 strangers and my grandad was his given sight back thanks to the generosity of his donors and their families. I feel it’s my duty and my privilege to encourage other people to think about signing up as donors.
Page links
Solid Organ Donation
What solid organs can be donated?
Human Tissue Donation
What human tissue can be donated?
How to become a Donor
a. Blood donation
b. Bone Marrow donation
c. Cord blood donation
d. Tissue and Organ donation
e. Sperm and Embryo donation
f. Whole body donation
g. Brain donation
Donor Experiences
1. Denise Darvall - first heart donor
2. Leroy Hobden -kidney
3. Matthew Ferguson - multiple organs
4. Living kidney donor Maggie
5.The Herrick twins - kidney
6.Charlotte Pestell - eggs
7.Mark Jackson - sperm
8.Barbara Ryder- kidney
9.Charlotte Newall - blood donor
Recipient stories
1. Louis Washkansky - first heart recipient
2. Graham Brushett - heart & kidney
3. Holly Shaw - kidney
4. Justine Laymond - double lung
5. Ivo Dawnay - liver
6. Elaine Betts - double lung
7. The Herrick twins - kidney
8. Alex Patrick - eggs
9.Jonah Lomu - kidney
10.Ivan Klasnic - kidney
11.Brian Clough - liver
12.Beth Morris - blood and bone marrow
13.Andy Loudon - kidney
14.Dave Garry - heart
15.Susanne Butscher - ovary
16.Claudio Castille - trachea
17.The Newall family
Waiting and hoping
1. Simon Sykes
2. Rachael Wakefield
And time ran out
1. Helen Miller
2. Adrian Sudbury
The Organ Donation Taskforce - ODT
1. The Organ Donation Taskforce - ODT
2. Recommendations of the ODT
Presumed Consent debate
1. Why change opt-in?
2. Why is legal and medical consent so important?
3. Opt-out or Opt-in?
4. Alternative consent systems