Ethan Eaves is just nine months old and is gearing up to spend his first Christmas in hospital as his family hope desperately for a heart donor.
Baby Ethan, from Luton, will have been urgently waiting for a heart transplant for 100 days on Sunday, three times longer than the average adult urgent heart patient waits for a transplant.
This isn’t the first life-or-death wait that the family has faced, Ethan’s dad Richard received a heart transplant in January – and now he’s hoping his son can also find a donor.
‘It is mixed emotions because we know without a heart Ethan will die but then we know and understand another child will have to die for Ethan to live,’ says Ethan’s mum Roselelia.
‘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.’
Roselelia says that despite the stressful circumstances, the family are still really excited about Christmas – but it will be hard not to have Ethan at home with them.
‘I’d like to be telling him off for keeping pulling all the decorations off my tree, but I can’t,’ she says.
‘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?’
The family have plans to decorate Ethan’s bed space at the hospital. Roselelia has ordered two ‘my first Christmas’ ornaments – one for Ethan’s tree at the hospital, and one for the family’s tree 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.’
Roselelia says that finding a suitable transplant for Ethan would be the perfect 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.’
The 34-year-old mum says that her entire family are signed up for organ donation, even baby 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,’ she explains.
‘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 it was 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.’
Roselelia is desperate for people to have these discussions, to make plans for what will happen when loved ones die – her family is dependent on the generosity of strangers.
‘Please just talk about it. Share your wishes. I pray that one day we can end the waiting list,’ she says. ‘We feel helpless and unable to do anything but what we can do is continue to raise awareness.’
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.
Another 147 children are in need of other organs and just over 6,000 adults join them on the waiting list.
‘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.’
‘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,’ says Anthony Clarkson, director of organ donation and transplantation at NHS Blood and Transplant.
‘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.’
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