Donor saved me.. please help my son find a heart
EXCLUSIVE Family’s race to save baby Ethan
NEW dad Richard Eaves survived a heart transplant to see his first child born – only to discover his baby son needs one too.
In a cruel twist of fate little Ethan was diagnosed with an enlarged heart – a different condition to his dad’s and the one which killed Richard’s own father at the age of 35.
Richard, 37, was saved by a transplant in January this year. His wife Roselelia was seven months pregnant and they were overjoyed when Ethan arrived two months later.
But Ethan fell ill in the summer and desperately needs a donor heart. The stricken tot is now under constant care in hospital and is hooked up to an air pressure machine as the family anxiously await news.
They grab precious cuddles when they can during occasional 15-minute breaks from the machine.
Engineer Richard said: “To see my son going through what I did is so much worse. I know I’m incredibly lucky to receive an amazing gift which allowed me to be a first-time dad, but never in a million years did I think the family would go through all this again.
“It feels so unfair, but in a way I feel lucky because if I hadn’t had my transplant I might not be here for Ethan.”
The couple are sharing their story to mark World Heart Day today – in the hope that it might encourage families to consider child organ donation, should the very worst happen.
CAMPAIGNED
From next March, all adults will actively have to opt out of organ donation under Max’s Law. The regulations are named after 11- year- old Max Johnson, who campaigned with the Mirror to change organ donor laws.
But the new legislation does not apply to under-18s and parents still have to give permission for doctors to use their child’s organs.
Richard described the agony of watching his vulnerable son struggle through heart failure, saying: “You can see he wants to do the things children his age do, like sit up and play with his toys but he’s so tired and frustrated.
“He’s very brave and tries to fight it, but his little head will loll to the side with tiredness and he’ll fall asleep.”
With Ethan becoming the third family member to suffer heart trouble, the family are now undergoing genetic testing. Richard added: “I suspected Ethan might develop something but thought it would be in his teens or 20s like me. To have this problem when he’s so little is especially terrible to see. You feel helpless.
“Last week was good but two weeks before we were talking about the possibility of him being put on a mechanical heart and what would happen if he didn’t make it and needed palliative care. They aren’t the sort of conversations we should be having about our six-month-old son.”
Richard’s condition only became known thre e months after he started dating Roselelia, 34, who works for a property firm.
The y fell “head over heels” in love after he turned up on their first Tinder date with a bunch of flowers and her favourite parma violet sweets.
Divorcee Roselelia has two daughters from a previous marriage – Alanah, six, and Maia, 11. All was going blissfully well until Richard collapsed in June 2017 while decorating their new home in Luton.
Specialists at Harefield Hospital revealed he had arrhythmogenic right ventricular cardiomyopathy (ARVC), which causes heart rhythm abnormalities or cardiac arrest.
It was the same rare condition that killed his dad David. Richard was fitted with an internal defibrillator designed to shock his heart into beating effectively and at Christmas 2017 he went down on bended knee to propose to Roselelia.
He said: “I was so nervous that when doctors later looked at my defibrillator they asked what I was doing on Christmas Eve at 7.03pm because my heartbeat had gone up to 200 beats per minute, when the normal rate is between 60 and 100.”
In May last year doctors advised the couple to bring their wedding forward.
SOBBING
When they tied the knot in August 2018, Roselelia was 10 weeks pregnant – and they revealed the news to 80 guests. Roselelelia said: “I gave a ‘present’ to Richard, who unwrapped a babygrow. Everyone was sobbing.
“We were making all the memories we could because I didn’t know if I’d be looking back on wedding photos as a widow in five or 10 years. Richard was tired by our first dance and I just danced around him on a chair, but it was such a beautiful, relaxed day.”
In January Richard got a call to say a new heart was available.
Roselelia said: “I don’t think the hospital staff will forget Richard’s operation in a hurry because he was essentially an outpatient and went up to the desk and said, ‘I’m here for my heart transplant’!”
When Ethan arrived in March, a healthy 8lb 10oz, the couple’s happiness seemed complete. The tot was sent for a routine heart test because of his family background and was given the all- clear at Luton and Dunstable Hospital in June. But things were to change horribly when – on
August 11, the couple’s first wedding anniversary – Ethan was rushed to hospital after falling ill in the night.
An X- ray revealed his heart was enlarged and the next day he was transferred to Great Ormond Street Hospital in London.
He spent a week in intensive care and was placed on the urgent transplant list when he took a turn for the worse. A tube was placed in his windpipe to help him breathe.
Ethan now has heart failure and devoted Richard is with him roundthe-clock.
He lives in hospital accommodation while Roselelia divides her time between GOSH and being with the girls in Luton. The family make the most of the tot’s breaks from the air machine, which eases the burden on his heart.
Richard added: “We try to cuddle Ethan, bath and play with him as much as we can during these times. Ethan’s energy is really low and he needs support and physio to help him move. But these are done in short bursts because he gets so tired.”
Ethan may be placed on a Berlin heart – an artificial pump – until a donor heart is available. Thanks to Max’s Law, it is reckoned 700 lives will be saved each year. Ethan’s parents beg readers to consider what they would do if the worst should happen.
Forty-two children are on the UK transplant list and 29 were aged under 10 when registered.
Children wait an average 70 days for a transplant, compared to 29 for adults.
Richard added: “It’s awful to think someone else’s child has to die for ours to live. If reading this makes just one family have a talk about what they would do should the very worst happen, it will have been worth us sharing.
“They may not be able to help Ethan, but they may be able to help another child who is in the same position.”
Never in a million years did I think the family would have to go through all this again
RICHARD EAVES ON PAIN OF SEEING SON’S HEART BATTLE