A baby boy from Luton will spend his first Christmas in hospital as he urgently waits for a heart transplant.
Nine-month-old Ethan Eaves has an enlarged heart and is now in heart failure, he will have been waiting for a heart transplant for 100 days on Sunday, December 8.
Families in Bedfordshire 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.
Mum, Roselelia, 34, who also has two daughters from a previous marriage, talks about how the family is coping and preparing for Christmas.
She said: “It is mixed emotions because we know without a heart Ethan will die but then we know and understand another child will have die 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."
This will be Ethan's dad, Richard's, first Christmas since receiving a heart transplant of his own in January.
The family want to raise awareness of organ donation and are encouraging people to talk about it with their own families.
Roselelia added: "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.
“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.
“All 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.
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 in Bedfordshire to take a moment to think about the people who will spend their Christmas hoping for just one thing; a life saving 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.”
From spring 2020 in England and Autumn 2020 in Scotland, the law around organ donation is changing.
All adults in Bedfordshire 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 in Bedfordshire 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 information visit: www.organdonation.nhs.uk, where you can also join the NHS Organ Donor Register, amend your details and more.