Evie's Story - Organ Donation Awareness Week

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Chloe and David are parents to four-year-old Evie and five-year-old Theo.

When Evie was four months old she was diagnosed with Dilated Cardiomyopathy, which is disease of the heart muscle which makes the muscle walls become stretched and thin. Despite the diagnosis, Evie was stable with medication and remained mainly at home, apart from a short blip in hospital six weeks after her diagnosis.

However, in September 2022 Evie’s heart failure levels in her blood came back very high without any obvious warning, and in January they peaked to the point that Evie could no longer stay at home. Evie became an inpatient at Freeman Hospital in Newcastle in February 2023 and was fitted with a Berlin Heart while she waited for a suitable donor. A Berlin Heart is a type of Ventricular Assist Device which supports the heart of patients with heart failure. Evie has been urgently listed for a heart transplant for the past six months.

Chloe described how Evie’s diagnosis and admission has affected their families’ lives:

‘It’s totally changed, we’re split in half. Theo is at school and Evie is in the hospital, so one of us is always with her. It’s overwhelming for Theo as he’s lost half his family at home – we do have days when we struggle.’

Evie’s family live in Middlesborough, an hour's drive away from Newcastle hospital where Evie is an inpatient. Chloe and David can stay in hospital accommodation when they visit Evie but are often balancing Evie’s needs at hospital with Theo’s needs at home. Chloe described that what she misses most is the normality of life before Evie was in hospital:

‘You miss the normality of just being at home, the bickering, tidying up the mess, it can be really lonely. I like to feel in control of things and with this I feel I’ve lost control. I’m always worrying about one of them – it’s really hard.’
‘I lost my dad in May so while I’ve been dealing with Evie being unwell, I’m also dealing my own grief as well. It’s been a difficult time for our family, but it has brought us all together and closer as a family.’

Chloe explained that both she and David have suffered with their mental health since Evie’s diagnosis and admission.

‘Both of us have struggled with anxiety. I wake up in the morning sick to my stomach. I always ring the hospital before I go to sleep to make sure Evie is okay. But her diagnosis changed everything for me – every cold or bug could be really serious and living with that uncertainty is tough. I played netball which used to really help, but since Evie being in hospital, I’ve had to give it up. I’ve lost that normal thing that would help me with my mental health. David and I both struggle with our sleep – it’s the control, you just feel like you can’t control any of it.’

Evie’s older brother, Theo, has felt unsettled throughout Evie’s admission and has been more anxious, especially when his parents are away from him.

‘He’s not necessarily anxious about Evie, but he gets worried that we’re not coming back. Sometimes, you forget their age – he’s only five. You remember what’s happening and how tough it is. I’m an adult and I’m struggling! I can’t imagine how he feels.’

Chloe and David got in touch with Rainbow Trust after meeting other families on the ward who were receiving support. Family Support Worker Monica has been supporting the family since June 2023, and provides hospital support for Evie to provide her parents some time to themselves.

‘Monica comes to do lots of play sessions with Evie, she loves to play! We try and fill her days having as much fun as possible. Having Monica’s support is so helpful.’
‘Life would be a lot more challenging without Monica. Evie’s been in hospital for seven months now, so it’s really important to keep variety of what she’s doing. She’s so active but sometimes David and I are just exhausted – it’s so nice to have Monica there to play with her for a few hours.’
‘It gives us time to chill and do something for ourselves. I can get things done and just have a short break knowing she’s safe and having fun – it is such a relief.’

Organ donation awareness week: 18th – 24th September 2023

Organ donation awareness week takes place every year with the aim of raising awareness at the need for organ donors – especially for children and young people.

Chloe explained the difference a heart transplant would make to Evie and her family’s lives:

‘For Evie, she knows it’s what she needs. She knows a new heart will mean home time.’
‘Her life would be completely changed. She would be able to eat more, gain more weight, and have more energy. She would thrive, because in every other aspect she does thrive. It would mean the world to us.’

Evie is just one of 48 children waiting for a heart transplant in the UK, and one for 245 children on the list for a transplant (*NHS Organ Donation and Transplantation - Activity figures for the UK as at 8 September 2023). The British Heart Foundation says that the wait to find out if a suitable heart is available for an urgent transplant is over twice as long for children and babies, an average wait of 88 days compared to 35 days for an adult, while children deemed ‘non-urgent’ will wait over a year, on average (research by the British Heart Foundation).

Becoming an organ donor could mean saving the life of a child like Evie and transforming her and her family’s life forever. If you have more questions about organ donation, or how you can help, we recommend reading about the decision on the NHS website for more information.

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