‘This Christmas, we’re just so grateful to be together’

There’s plenty for Roselelia Eaves, 36, and her family to celebrate this year. Both her husband, Richard, 39, and son, Ethan, two, have had heart transplants to save their lives, due to entirely unrelated conditions, but are now happy and healthy.

When Richard and I met in March 2017, it had been a year since my divorce from the father of my daughters, Maia, now 13, and Alanah, eight. But three months into our relationship, Richard collapsed. He had ARVC, or arrhythmogenic right ventricular cardiomyopathy. The right side of his heart had deteriorated, sending it out of rhythm. He was given a defibrillator and placed on the transplant list.

By August of the following year we were married and, at the start of 2019, while I was pregnant with Ethan, the call finally came: Richard was getting a new heart. The day was a blur – he arrived at hospital in the morning and was out, new heart working perfectly, by midnight.

An extra scan at 26 weeks ruled out any health problems for Ethan and he was born in March 2019 but, on our first wedding anniversary, when Ethan was five months old, I knew something wasn’t right. His skin was mottled, he was sweating and, by the time we got to hospital, his breathing had deteriorated. He was in heart failure, essentially, and was diagnosed with dilated cardiomyopathy – a different, unconnected condition to Richard’s.

We were sent from our home in Luton to Great Ormond Street Hospital, where he would stay for longer than we could ever have imagined. It was so hard to see our happy little boy deteriorate. After being intubated for 21 days, then placed on a CPAP machine to help him breathe, he developed suspected sepsis and was given a Berlin Heart – a machine to take over his own heart function until he could be given a transplant.

With both my husband and son needing heart transplants, it felt like we’d been dealt a particularly bad hand, but the team at GOSH made us feel we weren’t alone. They made Ethan’s first Christmas as great as it could have been: a realistic-looking Father Christmas came round the wards, and David Beckham even made an appearance. I took buffet food and a disco light and we played music on the ward.

When Covid-19 struck, I had to spend four months in GOSH charity accommodation, in Ethan’s bubble.

I was separated from Richard, who had to shield, and also from my daughters. It was so tough. I cried a lot to the nurses, who were always there to comfort me. It was particularly hard on Alanah, who was only six. She needed me to be a constant figure, but for well over a year

We were given the ultimate gift. ‘Thank you’ is not enough

I couldn’t be there. Thankfully, the girls’ father and his partner helped support us.

In summer 2020, we finally got the call that Ethan was getting a transplant. On the one hand I felt immense relief, but I also knew there was someone out there who’d lost their baby. It was so many emotions all at once. I’ll never forget going to see Ethan after the operation, without all his tubes. He got stronger and so much was new to him – the sight of sun and the feel of grass when he could go out. Taking him home was amazing, even if we couldn’t sleep for the first few weeks for fear of him stopping breathing.

Last year was his first Christmas at home. It was magical, but I’m even more excited about this Christmas, when we’ll be able to have all the family round.

Until your child is at Great Ormond Street and you see the love, care and attention the doctors and nurses give, it’s hard to understand what an amazing place it is. Everyone says we’re so strong, but I don’t think we are; we’re just a mum and dad who have had really supportive people around us. It’s not enough to say ‘thank you’ to them – or, of course, to the family who said ‘yes’ to giving us that ultimate gift.

RICHARD SAYS:

Dealing with my own condition didn’t cause me anywhere near the pain of seeing what Ethan went through. As someone whose family has benefitted from organ donation twice, I encourage everyone to have that conversation with their family now, before it’s too late.

• To donate to GOSH Charity’s Stocking Appeal to help give seriously ill children the best chance to get home to their families, visit gosh.org/stockingappeal

I’m really excited to have everyone round to celebrate