Ethan Eaves is just nine months old and will, most likely, be spending his first Christmas in hospital. For nearly 100 days now, he’s been urgently waiting for a heart transplant.
“We know that without a heart Ethan will die, but then we know and understand another child will have to die for Ethan to live,” says his mum, Roselelia Eaves. “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.”
Ethan is one of 38 children across the UK waiting for the call that a heart has been found for them. This is even more difficult for small children, as they need a heart which is the right size for their body. Overall, it’s thought 180 children in Britain will spend this Christmas waiting for an organ transplant.
Eaves, 34, from Luton, says the family has “mixed emotions” about the lead up to the 25 December. They are excited to celebrate Ethan’s first Christmas, but sad they won’t be at home. It’s also Ethan’s dad’s first Christmas since receiving a heart transplant in January.
The family plans to decorate Ethan’s hospital bed space to make it as festive as possible. Eaves has ordered two “my first Christmas” decorations – one for the tree by Ethan’s bed and another for the tree at home.
“Family and being together is what Christmas is about,” she says. “As long as I have my children and husband with me, what more could I ask for. As we can’t do a full Christmas dinner, I am cooking buffet foods. And no presents will be opened until we arrive at hospital to be with Ethan on Christmas morning.”
The family is grateful to be able to spend Christmas with their son, as they know others haven’t been so lucky. “We constantly think of those parents we have met along this journey, who have to face their first Christmas without their little ones,” says Eaves.
“If Ethan gets his transplant soon it would mean an amazing end to 2019. As we are with Richard’s donor, we would forever be grateful to that family.”
More than 6,000 people in the UK – children and adults – are gearing up to spend Christmas on the waiting list for an organ transplant. As thoughts turn to the season of giving, NHS Blood and Transplant is urging families to let loved ones know whether they’d like to donate their organs when they die, so that more patients can receive the transplants they desperately need.
Without an official record of your wishes, your family may be forced to make a decision on your behalf after your death. And less than half of families give consent for their loved one’s organs to be donated if they do not know their wishes, according to the NHS.
“We are all signed up for organ donation, even Ethan,” says Eaves. “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.
“And 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.”
Grandmother Julie Bartlett, 58, is also set to spend Christmas waiting for a heart transplant in hospital. “Waiting for the call is the toughest thing I’ve ever had to endure in my life,” says the mum from Essex, who is an inpatient at Harefield Hospital.
She has been waiting for a transplant for nearly three years. Today marks her 300th day in hospital on the urgent list. “You just can’t explain what it’s like being apart from family and friends, my sausage dogs, home comforts like my bed, and home-cooked meals, for so long,” she explains.
“It impacts every moment of every day and night. 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?”
Despite the struggles she has faced during a decade of heart failure, Bartlett says NHS staff always make a huge effort on 25 December to ensure the ward is festive, and serve up a traditional Christmas lunch.
“I’m looking forward to sharing Christmas with the team that have cared for me here, they really are extra special in every way,” she says. “The NHS should be very proud.” That said, she’ll miss putting up her tree and 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,” she says. “At the moment it feels like my life is on ‘pause’. I want to begin a new decade with a new heart and a new life.”
Eaves also remains hopeful for the future of her baby son. “We wake up every day hoping we get that call for Ethan,” she says. “He is our world and all we want is for him to live.”