Children’s Liver Disease Foundation Conference, Stratford-upon-Avon
You’ve signed the organ donor register or ticked the boxes when you applied for a driver’s licence. That’s excellent. And maybe you live in England, Wales, Scotland or Jersey, where the opt-out system for organ donation is already active. Over 90% of us say we would be willing to be organ donors. But still only about half of us have had a conversation with our families about organ donation. Even less have told our families what our wishes are. That figure counts because our families are the ones who will have the final word. And you, or anyone in your circle of family and friends, are much more likely to need a transplant than become a donor. Think about that.
There are lots of groups and campaigns and initiatives at all kinds of levels trying to encourage us to think about it and let people know whatever our decisions may be. Perhaps you know “Someone You Loved”, the song by Lewis Capaldi and the video with his distant cousin, the former Dr Who (otherwise known as Peter Capaldi). The song was six months in the writing and during that process, Lewis Capaldi became increasingly aware of organ donation and the need for more donors. Scotland was discussing the opt-out system at the time, so it was in the news.
He connected with Live Life, Give Life, an organ donation awareness-raising charity set up in 2006 by two amazing young women, Emily Thackray and Emma Harris, who were both affected by Cystic Fibrosis (CF). Some of their friends, also affected by CF, had already died. Emily died following a second lung transplant in 2014. Emma continues with the cause. Live Life, Give Life and the two Capaldis, created a beautiful music track and a powerful video that brought organ donation into the minds and hearts of many.
This week, Live Life, Give Life, and many other groups like them, have been all over social media, telling stories, showing photographs and raising awareness. You may have seen many more stories in the press or seen buildings – even the stones of the Giant’s Causeway in Northern Ireland – floodlit in pink for Organ Donation Week.
In no logical order, here’s a way to explore some more of those stories:
Transplant surgeons are pretty brilliant. They need complicated, intricate, delicate, sensitive skills to explore, cut the right not the wrong things, and find the ways to fix it all back together again so the body can get on with its even more incredible job of healing and looking after itself. There are miracles happening every day in those transplant theatres. But try and say thanks to them and some of them will tell you, “I’m only a plumber, I just disconnect and reconnect the pipes that keep us going.”
But for all that, disconnecting and reconnecting the optic nerve is still not quite in reach. Over a million nerve fibres bundled together in that tiny strand that connects your eye to your brain. Through those tiny fibres travels all the information that starts as bits of reflected light. Most of us take it in second-by-second, in through the cornea, the pupil, the iris, and the lens until it’s all projected onto the retina, the screen at the back of your eye. Then it’s transformed into electrical impulses and whizzes off along those million or so nerve fibres to various bits of your brain. And, because the eye lenses are curved, the light that comes in gets flipped upside down. Your brain turns it the other way up again so it will make some kind of practical sense for you. Your brain also layers the information from one eye over that from the other and turns it from 2D into 3D, so it can work out depth perception. That helps when someone throws you a ball. And a few other things.
Enough of the amateur science, though it is an amazing world to look around in and see more of how it might all work. Maybe because most of us know how vital our sight is to the way we experience ourselves, each other and our world – even if we often take for granted something that visually impaired people must experience very differently – it’s not surprising that when it comes to ticking that box about donating our eyes it can get a bit weird. Understandable, but…
Eye donation is really cornea donation. The cornea is the clear windowpane on the front of your eye. It’s not the coloured bits that make your eyes unique to you, as unique as your fingerprints. And until surgeons are able to reconnect the more than a million fibres in your optic nerve and help it to start working again, whole eyes won’t, can’t, be transplanted. It’s that clear windowpane on the front that can be transplanted instead. That’s it. In ten years or so you might need to check that again because medical scientists don’t usually give up trying just because something seems impossible, but for now at least, nobody else will be able to see things through your eyes. Can’t be done.
And then, of course, we do really know that when our brains stop working, it doesn’t matter how much light is shone into our eyes, they won’t see again. We won’t be needing them.
But somebody else might be able to benefit from those tiny windowpanes. With them, they could begin to see again. All those things we see and take for granted. You don’t need a list of what they are, just think of what you are lucky enough to be able to see. How precious and vital that is.
So, while we’re talking to our families and friends about our wishes for organ donation, if someone asks if we’d also be willing to donate our corneas should that rare situation ever arise, might we just look them in the eye, smile, and say “Yes”?
How many people are affected by an organ donation? You’ll never count them all. Start with the recipient. Just one. Then imagine what it could be like for their immediate family to see them recovering, to see them well again. Imagine their friends, in school, or work, or their social networks. Imagine the holidays together again, the birthdays, the nights out, the nights in, the career paths, the making and weaving of the rest of an ordinary life…an extraordinary life, made possible by the kindness of (usually) strangers.
Some organ recipients are already parents. Some, thanks to that donor, may become parents later in their new life. Children who wouldn’t have been there without that transplant. Children, even grandchildren, and anyone else who may come after.
What if that person with the transplant was so full of their new life, the opportunities it brings and their refusal to take any of it for granted that they just can’t keep the story to themselves and it bursts out, loud and clear and full of joy? What if they know they can’t pay back the kindness they have been given and choose to pay it forward instead? What if they take every reasonable – and maybe even a bit reckless – opportunity to celebrate being alive and it spreads out to all they meet? What if their story makes it into the media, or onto these social media platforms, or into other networks of caring people, moved and inspired enough to pass it on? What if their local school promoted Organ Donation Week, their local churches lit their buildings in pink, local sports clubs promoted organ donation on their shirts and at their games?
What if they take chances to start conversations that may lead others to think about organ donation, talking about it with their family and friends? What if even one of those conversations makes it possible for one more person to receive that precious gift of an organ and the story starts again in another circle? How many people will get to think about how amazing organ donation can be then?
If it doesn’t happen, if there is no donor, none of the rest can happen. Not just the transplant, but the lifetime that follows, however long it can now become. And what, who, how many make up a lifetime?
It’s a bit like trying to count stars. An organ donation is not just for the recipient. It’s a gift that transforms many more lives than we can see.
Let’s go back to the donor, and the donor family who gives permission for a transplant to go ahead. The donor, in most cases, will be a deceased donor. But what of their family and friends.
“My son died, and nothing will take away the loss I feel. It wasn’t supposed to happen, he had a sudden brain bleed and there was nothing they could do to stop him dying. That grief is my company now, every day. But I also know that somewhere there are two people who are only able to be alive now, living their normal lives again, because of our decision to allow a transplant. We knew it was what he would have wanted. That helps me.
One of them wrote to us. That was good. I can’t bring myself to write back, yet. I suppose that helps me understand how hard it can be for the recipient to write to me. They have almost no information about their organ donor so it’s not easy, I know. But I’m so grateful for the card I got. It makes a difference. I want to write back. I will, soon. Sometimes, some people even choose to meet up, recipients and donor families. I’m not sure. Maybe.
I saw a report on the local news about the Transplant Games when it was in my town a few years ago. Very short report, but great to see. I saw all those people there who’d had all kinds of transplants and wondered, maybe the two people my son helped to save were there too. Maybe they were even winning medals. That made me feel proud. I am very proud to be part of saving a life. Proud of my son. Knowing that someone, somewhere, is grateful to him every day.
One of the groups that was there at the Games was the Donor Family Network that supports donor families and helps raise awareness of organ donation. I might get in touch with them. I didn’t feel ready before but, well, maybe soon.”
Thank you, donors, and donor families, wherever you are and whoever you are. You gave so much more than an organ. You gave new life. And those new lives are lived with other people. Every one of them, every one of us, grateful for your gift and kindness. You have every reason to be proud, proud of your loved ones, and proud of your joint decisions and the new lives you have made possible. Thank you.
“So, yes, as we were saying, what I can’t understand is why, if so many people are dying of all kinds of things every day, how come there aren’t enough organs for those who need new ones anyway? And, if everybody is considered to be an organ donor in the new system, this opt-out system where your name is automatically on the organ donor list unless you actually say you don’t want it to be there, then why is there still a waiting list for people who need a transplant?
Good question – if everybody could be a donor it would make things a lot easier, wouldn’t it? The thing is, not everybody who dies can be an organ donor. Around 650,000 people die in the UK each year, but only about 1%, 6,500, a tiny minority, could be considered suitable for organ donation. Usually, they are people who have died in a hospital Intensive Care Unit or Emergency Department where starting a conversation about organ donation is an extremely sensitive matter. It is usually associated with the shock and tragedy of sudden death. Most donors are deceased donors. Even if the deceased had signed the organ donor register, the final word rests with grieving families in extreme circumstances.
When a medical team is convinced that their patient has no hope of recovery that hard news is discussed with the family. Only when the family accept the reality of that news and are ready to consider what might happen next are they introduced to a Specialist Nurse for Organ Donation. Their job is to support families through end-of-life conversations and any end-of-life decisions their loved one may have had. They will offer pastoral support and will raise organ donation as part of the end-of-life “pathway”.
When families don’t know what their loved one thought, only about half will say yes. If they know that their loved one would wish to be an organ donor then 9 out of 10 are more likely to agree.
If the preference of the deceased was not to be an organ donor, it is fully respected. Even where legislation says most people are considered to be potential donors unless they opt-out, the final decision is still not taken away from the individual or the family. No UK transplant team is going to remove an organ from a deceased person unless the family give consent. If they say no, it goes no further.
If the family can agree with donation, then the Specialist Nurses begin to assess the suitability of the organs and whether they can be used. Even at this stage, not all can. They work with other transplant specialists to match the potential donors to people on the transplant waiting list. They then take the patient to the operating theatre and support a special transplant surgeon team to retrieve the organs and arrange for them to safely reach their destination, wherever that may be in the UK. They then manage the care after death for the patient and offer more support and care for the family.
So, the chances of dying under circumstances that would allow us to be donors are already very low. Only 1%. Even then, not all organs will be suitable. If half of the affected families are unable to give their consent for donation to go ahead this number falls again. Even if we are on the organ donor register, or haven’t opted out under the new system, the most important thing is to speak to our family and friends about your wishes. It could make an extremely difficult decision just a little bit easier. And it could bring the dawn of hope to others waiting to hear of a kind and generous gift from strangers that can make all the difference between death and new life.
“A wonderful bird is the Pelican, its beak can hold more than its belly can…”, so the poem says.
The Blood Transfusion Services in Northern Ireland and in the Republic of Ireland have used the symbol of the pelican since they were formed. It is inspired by an ancient legend about a mother pelican in a time of famine that fed its young with drops of blood from her own breast, and so saved their lives. It is an image of generosity and self-giving that symbolises the kindness of today’s blood donors. Somewhere we have at least one silver and one gold pelican lapel pin in our family honouring blood donations, and a bright shiny red badge with its pelican symbol marks our new generation’s commitment.
It takes under an hour to donate a pint of blood, and only five or ten minutes of that is the actual blood collection. Some paperwork and confidential questions to make sure you’re eligible. A good drink of water. A tiny finger prick to check your haemoglobin levels are OK. A blood pressure cuff on your arm and a small needle into your vein. Ten minutes of relaxing while you gently donate down the tube. Then there’s the cup of tea, or two, and a biscuit (six million are eaten after blood donations every year!). And you’re done. Helped save a life, or possibly three. Really. Come back a few months later and do it all again.
Your one donation, one unit, can be split into red blood cells, plasma and platelets and each used for different treatments. Two thirds will probably be used to treat medical conditions like anaemia, cancer, blood disorders, and the other third for emergencies and in surgery.
Each year, the UK uses about 2.5 million units of blood. England needs about 5,000 donations a day, and about 135,000 new donors a year, to replace those who can no longer donate.
Or give a little more time and donate plasma, or platelets. It all works the same way except with these two the blood isn’t just collected, it goes through a machine to separate the plasma, or the platelets, whichever you are giving, and the red blood cells go back into your arm. Plasma takes about 40 minutes and platelets about an hour and a half. (And rumour has it that the biscuits afterwards are more substantial.)
“But this isn’t organ donation, is it?” No, but it would be a very rare organ transplant that didn’t include some level of blood transfusion, and that’s from a whole network of generous donors. And it’s something you can do so easily (nine out of ten first-time blood donors say it was as easy, or much easier, than they had imagined it to be).
“It’s what? Organ Donation Week? Is it? Oh, that’s a great thing. I heard a story about that a while ago. Someone who had a transplant. Can’t remember what. Kidney or liver, maybe a heart, I’ve forgotten. Anyway, they went on to climb a mountain and win loads of medals for sport. Amazing. I couldn’t do that, and I’ve still got all my original bits.
My mum told me there’s someone in our family had a transplant. Can’t remember who. Think it might have been a cousin of my mum. She said if they hadn’t had a transplant they wouldn’t be here now.
It’s really good they’re advertising it so more people get to know. I suppose there will be stories every day on social media about those that have been affected by it. That’s probably quite a lot of people when you think about it. Apart from the ones themselves, you know, the ones that actually have the transplants. And the person the new organ comes from. Well, not new, exactly, used, but in good condition.
And that person’s family are really affected as well obviously, because, well, it’s their dad or brother or sister or cousin or someone close that’s dying whose organ might be used. That must be really hard.
I wonder how they start talking about whether they can use an organ from the person who’s just died. I hope I’m never in that position. Must be a dreadful conversation to suddenly have to have in a hospital.
I’m happy to be an organ donor though when my time comes. They’re not much use to me after I’m gone, are they, so if they can help someone else then that’s good with me. Not sure about my eyes though, think I’d rather keep them. I signed that bit on my driving licence ages ago so that’s OK. Anyway, they’ve changed the rules in some places now. England, Wales, and Scotland, they’re saying. Think they’re talking about it in Northern Ireland as well. That’s good.
So, I suppose that means we’ll all be organ donors now or could be when we die. That sounds better, I think. Must mean there’ll be loads of organs available. That’s great. Hope I never need one though, don’t think I’d be winning any medals afterwards.”
Have you ever heard a conversation like that? Or said any of it yourself? Good. Seriously, it’s a start, and there are a few things that could be helped with better information. There are others who have yet to start. Or aren’t sure how to. Once a conversation is started it’s easier to move it along. That’s what Organ Donation Week is about, amongst other things, starting, and informing, those conversations. So, wherever you start, keep chatting over these next few days and we’ll add some short blogs on the way.
If it’s all new to you, it’s great that you’re here. Thanks for listening, and we hope you’ll find a few things this week that might help a conversation.
If you’ve had a transplant yourself, you’ve probably already been tangled up in these kinds of conversations in all kinds of places. Your story is a powerful treasure. Keep going, Live Loudly.
If you’re a donor, or part of a donor family, you’re a marvellous part of a miracle. We are all more grateful to you than we can say. Be Proud.
If you happen to be a transplant consultant or specialist nurse for organ donation or some other part of the transplant teams, you’re already doing a brilliant job, thank you immensely, and let us know if there’s anything you want to say!
A small Aladdin’s Cave, the Children’s Bookshop in Lindley, Huddersfield. Two sisters chose their next books and then continued their enjoyment of the shop, the company of stories, colours and adventures.
Eventually, it was time to go. Lucia was kneeling on the floor, a few pages into another book that had nodded to her as she scanned along the shelves. A story of a girl in South Africa, and a white giraffe. “Do you want to swap, and take that book instead?” She thought for a moment. “No, it’s OK. Next time.” No need to write down the information, the book was clearly stored in her mind.
A few days later and a couple of hours drive down the road we stopped in a village in search of lunch and a cuppa. A pie shop supplied the first. A second-hand book sale in a village hall supplied the second. Tea swallowed, we wandered around the tables of books. There it was again. The White Giraffe, by Lauren St John. Excellent condition. As though it was waiting for us, so it came with us.
It came on holiday to Spain. Lucia started reading it in the back of the hired car. The car that broke down. Hours later, and only after driving away from Granada airport in a replacement car, we discovered The White Giraffe was not with us. It must have stayed in the pouch behind the passenger seat in the car we left behind.
A few months later and eight-year-old Lucia was in Birmingham Children’s Hospital, recovering from her first liver transplant. Lucia wrote a short leaflet of dos and don’ts in caring for patients in recovery. “Don’t – keep telling me how good I’m looking when I don’t feel like it.” “Do – tell me stories, or read to me…” We did. We finished a few short books that were in Lucia’s bag when she was admitted in a hurry, the week before. They were hard going. We all thought so. But we’d started so we’d finish, making them more tolerable with a variety of silly accents, not sticking too closely to the words on the page and inventing our own alternative dialogue for the characters as we went along.
Eventually, they were done. I ran from the hospital to one of the city’s bookshops, the last customer squeezed in before closing time. I knew what I was looking for and, not finding it on the shelf, I asked an assistant. She looked doubtful but went to look. When all the other customers had gone, the security man looking between me and his watch, she returned. “You’re in luck. It wasn’t where it should have been. Must have been re-shelved by mistake. Bit dusty from the storeroom but brand new.” Half an hour later, for the third time, Lucia started The White Giraffe. This time, we read it aloud to her, good company for her hospital recovery.
A year later, Lucia was on the transplant list again. We read the second book in the series, Dolphin Song, as we waited to see if a call would come.
As we finished reading that story, another was beginning.
“I’d like to thank the author for writing those books,” Lucia said.” They’re good stories, and they’ve been great for me in hospital.”
“Well, you can. Why don’t you?”
“Really? How can you do that?”
“We can find the address for the publishers, and they’ll pass it on.”
So, Lucia wrote to Lauren St John. Not for a response, just to say thank you. But a gracious response did come, a note, a poster of Dolphin Song, a bookmark and another book, The Last Leopard. In time to take into the Children’s Hospital, hoping we could read it to Lucia if her second transplant went well.
We read two more books that time. Lucia enjoyed them all, every word of them. Stories that nurtured her kindness, encouraged her empathy, kindled her curiosity, strengthened her resolve as she followed the adventures of strong young women, each inspiring her love of skilful writing and ambition to try it for herself.
So, last year, as Lucia began to come round from that fourth transplant, one more book by Lauren St John, Snow Angel. Whatever the difference between the book’s target ages and her own, Lucia wanted to hear the story. In its pages, a girl looks for three magical moments each day to keep her going against the odds. Three things to be grateful for. We carried that on in the hospital whenever we could.
After Snow Angel, Lucia promised to write to Lauren St John again. We fulfilled her wish. Then, less than a year after Lucia died, a gracious request came back from Lauren, to dedicate her new book to Lucia. An invitation to us to add a note about Lucia, to include something of her light and energy in the last pages of Lauren’s book.
Wave Riders by Lauren St John, art by Rachael Dean
Wave Riders was published in June this year. Orphaned twins, sailing in the Caribbean, lose their guardian to a crashing wave and find themselves soaked in a mystery about their own identity. An engrossing adventure. Lucia would have listened intently to every word, eyes suddenly widening at some images that would have caught us all by surprise.
The book is on its own journey now, out there in a sea of readers. And, thanks to a gathering of gratitude, Wave Riders carries another story, a precious passenger and her invitation to us all to Live Loudly, Donate Proudly.
Gratitude, the time taken to turn round and say thank you, became such an essence of Lucia. Her gratitude to donors above all.
Gratitude for life and the chances she had been given.
Gratitude for the kindness of others, to Lucia, to her family, and everywhere she saw it in others.
Gratitude for the people in the hospitals who gave her their skill and attention…
Gratitude for the Transplant Games and the incredible opportunities to laugh and compete and train and dance and sing and feel the strength of that outstanding family.
Gratitude for friends, for school, for…the beach.
Gratitude for the unnamed goodness that she sensed in her life and encouraged in the lives of those around her.
Gratitude.
And giving voice, action, to her gratitude.
That’s what started Live Loudly Donate Proudly. It’s not really a campaign. It’s a “thank you” that is “paid forward” because it can never be paid in full.
And just like that innocent wish as we finished reading the last words of Dolphin Song – “I’d like to say thank you”, you can never know where a simple act of kindness from a grateful heart can lead…
This day last year we shared a most private and intimate space. The four of us. Two sisters who had laughed, played, chatted and danced their way through almost, almost, twenty-one years of closeness together. Their Mummy and Daddy, privileged to be their hosts and proud of them both beyond compare. And the company of a caring nurse whose threading of kindness through our months in LITU made her a friend, much loved by Lucia.
One year on from Lucia’s death in King’s College Hospital, London, back by the beach Lucia loved so much, this day will again be quiet, intimate. Large gatherings are still pandemic prohibited, and we wouldn’t attempt such a thing until Lucia’s Transplant Games family can travel and gather in safety and confidence.
So, the day is for small things. Moments and symbols. Seeds. Planting, perhaps. Plant a thought. Plant a conversation. It’s what Lucia was doing when she set up Live Loudly Donate Proudly. Planting seeds.
And there is plenty of fruit already. Some rich and ripe and harvested. One man was excited enough to let Lucia know that, thanks to her planting, he had become a bone marrow donor and saved the life of a girl he didn’t know. Others who have had the conversations at their kitchen table have, in the face of sudden family tragedy, graciously upheld decisions made and from their own pain given life and hope to another, to others, through the miracles of transplantation.
Plant a conversation, plant a life.
Many have signed the organ donor register and, more importantly, talked about their decision with family. Some have been encouraged to add their voices, often in creative ways, to encourage conversations to start in other places.
Live Loudly Donate Proudly has become a voice amongst many others online, on Facebook, Twitter and Instagram. It has been on the pages of the newspapers, on the radio and the television, local and national.
Lucia, often to her astonishment and always with eyes wide in joy and delight, has been called forward as winner of awards for sport, for campaigning, and the youngest name on that New Year’s Honours list in 2018.
All through planting conversations. A few words, a speech, an article, a blog, an interview, the joy-filled gift of turning intense personal struggle into a resource, a lifeline for others.
In 2018, Lucia was invited by the BBC to be recorded for Radio 4’s Listening Project. Invited to create a conversation with a friend on living with organ transplant. Lucia invited Erica Ferguson, Northern Ireland Transplant Association, to talk with her. The two of them chatted for an hour or more. A beautiful conversation filled with wonder, joy, amazement at their good fortune, their survival, and the sense of responsibility that grew with them. Everyday gratitude to donors and profound love for life, for the feeling of rain on skin, wind in hair, breath in lungs. The chance to dance.
A few minutes clip was broadcast as the Listening Project for 10 Aug 2018. The full conversation is archived in the British Library and copyrighted to the BBC. On this day when we would most like to hear Lucia’s voice bouncing around us again, we offer you this link to her conversation with Erica. Listening Project: Lucia and Erica Listen to it, all in one go, or in instalments, on your own, through headphones as you walk on a beach or with family and friends as you sit with a candle, or a cake… However you listen, may it be another gift from Lucia to you. A bit more of her commitment to Live Loudly Donate Proudly, an inspiration to plant another conversation, an invitation to life and the opportunity to bring this precious gift of life to someone else.
(And thank you, Lucia. Because we know you as we do, we will never be surprised to find your light and energy beside us, and on the road ahead…)
Lucia started Live Loudly Donate Proudly from her passion for promoting organ donation. It was matched by her deep belief in the capacity of children and young people to tackle big issues and be creative agents for change. Lucia’s commitment to see organ donation awareness included in the Northern Ireland National Curriculum in open and imaginative ways found good soil and has good gardeners to keep it growing. We are delighted to share this blog from Catherine McKeown, recently appointed as Organ Donation Promotion Manager for N Ireland, and welcome Catherine’s energy and skills as we work towards the Curriculum, and much, much more… Read More »
The “Live Loudly” of this campaign is, primarily, to encourage us to be loud and clear about our wishes for organ donation. Then it is an encouragement to any who have had a transplant to show themselves, donor families and everyone else, that life after a transplant can be lived to the full. For Lucia, Live Loudly also became a personal call to raise her voice as a young person, a young woman, and to inspire others to raise their own. International Women’s Day was a day Lucia wouldn’t miss.
Children’s Liver Disease Foundation Conference, Stratford-upon-Avon
Image by msandersmusic 
Andromeda Galaxy
Alice and Lucia