A lifesaving gift is on the Christmas list of thousands of people this year

Families are being urged to share their organ donation decision this festive season so that their loved ones know what they want when they die, and more patients can receive the transplants they need.

There are currently 6,186 patients in need of an organ transplant in the UK, and 185 of them are children(1).

Julie Bartlett, aged 58, has been waiting for a heart transplant for nearly three years, and has been on the urgent list for 300 days today (Tues 3 Dec).

The mum and grandma from Essex says: “Waiting for the call is the toughest thing I’ve ever had to endure in my life. You just can’t explain what it’s like being apart from family and friends, my sausage dogs and my home and home comforts like my bed and home cooked meals for so long.

“It impacts every moment of every day and night, as you constantly and desperately expect the transplant coordinator will come bearing news. 

“I spent Christmas 2016 here in hospital recovering from my Ventricular Assist Device surgery but last Christmas was my twin grandsons first Christmas and that was a blessing.

“Waiting for a transplant at Christmas is just like waiting any other day, a gift of life on Christmas Day, wouldn’t that be the greatest present?

“I’m being positive and hoping that Christmas this year will be a repeat of 2016 and I will be recovering from my transplant surgery but it may well be yet another day waiting for the call.

“I know that the nurses make a very special effort with traditional Christmas lunch, the staff make it very festive. Family are invited to join in. Volunteers came in and sang carols on the ward and it was beautiful and emotional. I’m looking forward to sharing Christmas with the team that have cared for me here, they really are extra special in every way - the NHS should be very proud. 

“I love all of Christmas. I’m going to miss putting up my tree and all the decorations which have sentimental meanings. 

“A transplant would give me my life back again, I have so many plans for the future with my family and friends. At the moment it feels like my life is on ‘pause’. 

“A transplant for Christmas would make this impossible year as an inpatient worthwhile and a perfect way to end a whole decade since I was diagnosed with familial hypertrophic cardiomyopathy. I’ve spent the last decade in heart failure and I want to begin a new decade with a new heart and a new life. 

“I will be able to spend time that I’ve missed out on this year with my daughter and twin grandsons, I’ve missed almost a whole year of their little lives already, they’ve grown so fast. Also travel and visit my son and granddaughter in Australia, I haven’t seen her since her first birthday. I can’t do any of those things now, I can’t even go outside the hospital. 

“I think all donors and their families are extremely kind and brave. Donors who choose to give their organs will never know what a life changing or lifesaving impact their decision has made to their recipient.

“The families of those donors, who ultimately make that final decision, during the most difficult of times, will hopefully find some comfort in the knowledge that their loved one lives on and has made a difference to someone’s life.  

“My hope for 2020 is the start of my new life in a new decade. Free of heart failure and mechanical gadgets of which I have been most grateful.  

“When I get my transplant, I will be thinking of my donor and their family first. I hope to find some way of showing them my gratitude for their bravery and thoughtfulness in agreeing to organ donation.”

Harefield Hospital’s director of transplantation Andre Simon said: "On the transplant unit at Harefield Hospital we frequently see how a person's life can be completely transformed through the gift of organ donation.

“Discussing organ donation with families and loved ones could mean the difference between life and death for someone on the transplant waiting list. We encourage everyone to make a new year’s resolution to have these conversations and to sign the organ donor register, so we can help more patients like Julie.”

Baby Ethan Eaves, 9 months old, will have been urgently waiting for a heart transplant for 100 days on Sunday (December 8th). He has been waiting three times longer than the average adult urgent heart patient waits for a transplant and will spend his first Christmas in hospital(2). It will be his dad, Richard’s, first Christmas since receiving his heart transplant in January and becoming a dad in March. Mum, Roselelia, who also has two daughters from a previous marriage, talks about how the family is coping and preparing for Christmas.

Roselelia, aged 34, from Luton, says: “It is mixed emotions because we know without a heart Ethan will die but then we know and understand another child will have died for Ethan to live. It's hard to comprehend it and we wouldn't wish anyone to be in this situation, but we are and are just trying to remain as positive as we can.

“We try to keep as normal a routine as possible for a 9-month-old. We have an amazing nurse and team who are encouraging Ethan to sit up and roll over. He is a little behind on these milestones, but he is trying so hard. We do as much as we can for him daily but I also have two other daughters from my previous marriage.

“We’re excited about Christmas because it is Ethan's first Christmas but sad that we aren't waking up on Christmas Day with him at home. I’d like to be telling him off for keeping pulling all the decorations off my tree, but I can’t.

“So we are preparing for Christmas with him no matter where we are. Family and being together is what Christmas is about. As long as I have my children and husband with me, what more could I ask for.

“We will be decorating Ethan's bed space. I have ordered two “my first” Christmas decorations one for his tree and one for ours at home. As we can't do a full Christmas dinner, I am cooking buffet foods so we can all have a Christmas dinner as best we can. No presents will be opened until we arrive at hospital to be with Ethan on Christmas morning.

“We constantly think of those parents we have met along this journey, who have to face their first Christmas without their little ones, so we don't take it for granted and are just grateful for every moment we have together.

“If Ethan gets his transplant soon it would mean an amazing end to 2019. We started off the year with my husband having had a heart transplant and never thought we'd be going through this again. As we are with Richard’s donor, we would forever be grateful to that family and words cannot even begin to explain how precious of a gift and life you have given someone.

“We are all signed up for organ donation even Ethan. We have already had those discussions that should Ethan not survive his journey, we take comfort knowing he would live on and save another’s life. We cannot accept something without considering doing it ourselves. Even when Richard’s old heart was taken out his valves were donated and saved others. Paying it forward is what we believe in.

“We know how difficult it could be to even have these discussions. For anyone to think about dying and death, it is a very morbid subject. Which in this day and age I find very strange because, in a world where people are so open and willing to put their lives out there on social media, they don’t seem to have these types of discussions. 

“AlI I ask is you put yourselves in our shoes for one minute and think. Please just talk about it. Share your wishes. I pray that one day we can end the waiting list. We feel helpless and unable to do anything but what we can do is continue to raise awareness.

“We are living proof of the need for organ donation and what it can do. If my husband didn’t have his heart transplant, he may not have been here today to support me through a very difficult labour, raising Ethan, the girls and being with us every day, every step of the way.

“We wake up every day hoping we get that call for Ethan. He is our world and all we want is for him to live.”

Ethan is one of 38 children across the UK waiting for the call that a heart has been found for them. It is particularly difficult to find organs to help small children waiting for a heart transplant, as they need a heart the right size for their body(3). Another 147 children are in need of other organs and just over 6,000 adults join them on the waiting list(1).

Anthony Clarkson, Director of Organ Donation and Transplantation at NHS Blood and Transplant, said: “Christmas is an incredibly busy time of year, however away from the rush and bustle of preparing for the holiday it should also be a time for family and thinking of others.

“We are urging everyone to take a moment to think about the people who will spend their Christmas hoping for just one thing; a lifesaving organ transplant. Would you like to help if you could? If you needed a transplant, would you want someone to donate to you?

“Please let your family know what your organ donation decision is so that we can save more lives. Every precious organ donor allows more families to spend special times together.

“A quick chat can save lives, and we know that even at a time of grief families take enormous comfort and pride from their loved one’s donation.”

Keith Buckley, aged 74, from Nottingham, sadly died in December 2015 after falling off a ladder while putting Christmas lights up at his home. The retired fire officer suffered a serious head injury, his kidneys helped two people. His daughter, Jane Stubbs, is facing her fifth Christmas without him but gains comfort from the fact that he saved lives by becoming an organ donor.

Jane, from Nottingham, said: “It was unexpected and was absolutely devastating.  I never imagined something like that would happen to my dad. You think they are invincible.  It was the last thing we thought we would have to be dealing with at that time of the year.  There is never an easy time to lose someone, but Christmas just seems even worse.

“Something positive had to come out of something so tragic and it was what my dad wanted. My dad had never talked about organ donation or dying but I wish we had talked about it.  He had already signed up to the organ donor register, but I wonder if he ever thought it would apply to him?  

“You just want to make sure you are doing what he wanted, and I would not have gone against his wishes. There is nothing to fear by allowing your loved one to be a donor.  Our experience was amazing.  The hospital staff were so caring and compassionate.  Nothing was too much trouble.  They made the whole thing more bearable.  

“Both of his kidneys were used and two people received those. 

“I hope they spare a thought for my Dad and for us and raise a glass or two to his memory.  I hope they make the most of every day.  It makes me feel proud knowing my Dad helped them to live. I don't want them to feel guilty though - I know some recipients do - just carry on living.  

“You try and focus on the positive happy memories, but it is hard.  I miss him so much.  We never got to say goodbye or tell him how much we loved him.  As a family we will spend time together this Christmas. Life goes on.  I love to talk about him and tell everyone how proud I am of him.  

“Family at Christmas was very important to my Dad. He liked to have the family around him at that time of year.  It was an opportunity for us all to come together, to have a laugh, and make some happy memories.  He absolutely doted on his two grand-daughters.  We love to talk about our family Christmas memories, particularly when I was a child and the things we used to do.

“I would urge everyone to have the conversation and to make sure they sign up to be an organ donor.  If your loved one agrees to donate their organs make sure that you abide by their decision when they pass away.  It's not about your needs, it's about what they wanted to do. I fully support the new legislation - most people would expect or demand to receive an organ if they or a loved one needed one.  You should therefore be prepared to donate.”

From spring 2020 in England and Autumn 2020 in Scotland, the law around organ donation is changing. All adults will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate, known as ‘opt out’, or are in one of groups not covered by the new organ donation law. This system was introduced in Wales in December 2015 and in Jersey in July this year.

Families will still always be involved in organ donation, so it is vital that they know your choice. In the lead up to the change in law, NHS Blood and Transplant is urging families to talk and share their decision. If the time comes, families find the organ donation conversation much easier if they already know what their relative wanted.

To find out more look out for the new TV advert, which explains more about the law changing in England next year and launches over Christmas. You can also register your decision on the organ donation website.

Notes

(1) Active transplant waiting list as at 21 November 2019

(2) For paediatric heart patients, the median waiting time is 79 days for ‘ever urgent’ registrations. For adult heart patients, the median waiting time is 30 days for ‘ever urgent’ registrations. This is for patients registered between 1 April 2011 and 31 March 2016 from the Transplant Activity Report 2018/19

(3) 318 people are waiting for hearts, including 38 children, as at 21 November 2019. For some children on the waiting list, a young donor is their only hope. Hearts and lungs in particular need to be matched by size because of the limited space inside the chest, and also to ensure the two organs have comparable strength and do not overwhelm or underpower each other.