Baby boy with heart failure faces a race against time for transplant

Baby boy with heart failure faces a race against time for a life-saving transplant – just months after his father had one

  • Ethan Eaves and his parents have been urgently waiting for his heart transplant 
  • Nine month old is in hear failure and Sunday will mark 100 days since diagnosed 
  • His father was diagnosed with arrhythmogenic right ventricular cardiomyopathy

A nine-month-old baby boy, with an enlarged heart, has had to wait over three months for a transplant – just months after his father had one.

Ethan Eaves, from Luton, and his parents have been urgently waiting for a transplant, which could save his life – and on Sunday it will mark 100 days since he was diagnosed.

His father, Richard, was diagnosed with a arrhythmogenic right ventricular cardiomyopathy, but successfully had a transplant in January. 

Ethan, who is in heart failure, has been waiting three times longer than the average adult urgent heart patient waits for a transplant – while he will spend his first Christmas in hospital.

Ethan Eaves, from Luton, and his parents have been urgently waiting for a heart transplant – and on Sunday it will mark 100 days since he was diagnosed

His father, Richard (pictured) was diagnosed with an arrhythmogenic right ventricular cardiomyopathy, but successfully had a transplant in January.

However, it will be his Richard’s first Christmas since receiving his heart transplant in January and becoming a father to Ethan in March.  

Ethan’s mother Roselelia, 34, who also has two daughters from a previous marriage, said about the transplant: ‘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.’

Ethan, who was diagnosed in August, and quickly put on the urgent waiting list, has been in good hands: ‘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.’

It will be his Richard’s first Christmas since receiving his heart transplant in January and becoming a father in March

‘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 admitted that the family-of-three are excited about Christmas, as its Ethan’s first, but sad they won’t be 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.

Roselelia  admitted that the family are excited about Christmas, as its Ethan’s first one but sad they won’t be waking up on Christmas Day with him at home

‘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.’

Roselelia also spoke about those who have not been so fortunate: ‘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. ‘

Ethans’s mother admitted that the family-of-three are excited about Christmas, as its Ethan’s first Christmas, but sad they won’t be waking up on Christmas Day with him at home

She went on to talk about organ donation: ‘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 it was we believe in.’ 

Ethan’s mother admitted that they are decorating Ethan’s bed space and she has just odered the first decoration for his tree 

Parents of Ethan, including father Richard, said they wake up every day hoping that they get that call for Ethan

She went on to say: ‘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.

DANGERS OF AN ENLARGED HEART  

An enlarged heart (cardiomegaly) isn’t a disease, but rather a sign of another condition.

The term ‘cardiomegaly’ refers to an enlarged heart seen on any imaging test, including a chest X-ray. 

Other tests are then needed to diagnose the condition causing your enlarged heart.

You may develop an enlarged heart temporarily because of a stress on your body, such as pregnancy, or because of a medical condition, such as the weakening of the heart muscle, coronary artery disease, heart valve problems or abnormal heart rhythms.

Certain conditions may cause the heart muscle to thicken or one of the chambers of the heart become larger.

Depending on the condition, an enlarged heart may be temporary or permanent. 

Treatment for an enlarged heart can include medications, medical procedures or surgery.

Mayo Clinic 

‘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***. 

Another 147 children are in need of other organs and just over 6,000 adults join them on the waiting list*.

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.’

If you’d like to sign up for organ donation more information can we found here. 

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