Girl, 4, harrowing milestone with one year in hospital waiting for transplant
A little girl marks a full year in hospital today as her family endures an agonising wait for her heart transplant.
The parents of Evie Green spoke of the torment of waiting for the gift of life, and their appreciation of her round-the-clock NHS care. The four-year-old is on a ward at Newcastle’s Freeman Hospital as mum Chloe, 28, and dad David, 35, pray for a miracle.
“We knew it would be a long wait, but hoped it might end sooner,” said Chloe. “For Evie it is a year on the list. On the NHS website, it says the average wait is 88 days. The reality is so much longer, especially for children. I think the Mirror campaign has done so much to raise awareness. If one person reads this and thinks about organ donation, then it is worth it.”
Evie Green, 4, is about to mark a full year in hospital as she waits for a heart transplant (MDM)
Evie’s parents have told of the torment of waiting for the gift of life (MDM)Evie is one of 244 children waiting for an organ transplant in the UK; 42 of them need a new heart. Her parents paid tribute to the dedication of staff caring for Evie and other children waiting for a transplant on Ward 23 at the Freeman. In recent weeks, they have met Newcastle Utd footballer Alexander Isak, members of the Durham cricket team, and the stars of Newcastle Theatre Royal’s production of ‘Pinnochio’.
“They get admissions all the time on the ward,” said Chloe. “It is like a family because we spend so much time together. It is very humbling as so many former patients and their families come back to show their love.”
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Chloe believes the situation for recipients ‘has improved so much’ thanks to Max and Keira’s Law, introduced in 2020 thanks to the Mirror’s ‘Change the Law for Life’ campaign. In 2016, when we began our crusade, there were 22.5m names on the NHS Organ Donor Register. Now, there are more than 30m, around 46 per cent of the total UK population.
The four-year-old lives on a ward at Newcastle Freeman Hospital alongside other children waiting for a transplant (MDM)A total of 28m are prepared to be organ donors, a rise of 5.5m since our campaign began. “I think people know how dignified it is for the families of donors now,” added Chloe, of Middlesbrough. "They know how it works. It is so important to get this message across to the younger generations. They really do need to be discussing organ donation in schools.”
Evie, who has a little brother Theo, five, was placed on the urgent transplant list after she suffered a cardiac arrest. Shortly afterwards, she was supported by the parents of Max Johnson, 16, the Mirror campaigner who received a new heart at the Freeman. Civil servant Paul, 50, and charity worker Emma, 53, of Winsford, Cheshire, sent their ‘love and prayers’.
Dad Dave, 35, and the rest of the family are praying for a miracle (MDM)Evie’s condition affects the heart’s ability to pump blood around the body. Last March, she was moved into a paediatric intensive care unit to bring a skin infection under control. However, her health deteriorated and the next day she had open heart surgery. During the operation, her heart stopped, but the team managed to bring her back. Doctors made a national callout to see if there was a heart donor available. Consultant Louise Kenny, who fitted her Berlin Heart, admitted: “She has a long journey ahead of her. She could wait anywhere between one and two years for a donor heart.”
Angie Scales, Lead Nurse for Paediatric Organ Donation at NHS Blood and Transplant, told how crucial it was for families to consider the gift of life. “For the many children like Evie on the transplant waiting list, their only hope is the parent of another child saying ‘yes’ to organ donation at a time of immense sadness and personal grief,” she said.
“Yet, families tell us that agreeing to organ donation can also be a source of great comfort and pride. When organ donation becomes a possibility, it is often in very sudden or unexpected circumstances. When families have already had the opportunity to consider organ donation previously or know already it is something they support, it makes a difficult situation that bit easier. By encouraging more young people and their families to confirm their support for organ donation on the NHS Organ Donor Register, we hope to be able to save more lives of children, both today and in the future.”
Chloe and David stay at the Freeman thanks to the Sick Children’s Trust, the charity which provides vital accommodation. Experts believe Max and Keira’s Law will see 700 extra transplants each year. It means people are assumed to be donors when they die, though families are always approached first for consent.
The National Organ Donor register
The Daily Mirror played a key role in the introduction of the national organ donor register. It was launched back in October 1994 with the help of campaigners like Christine Cox.
A month later, the DVLA partnership came into force which enabled drivers to sign up as organ donors. By 2011, that saw more than half a million a year signing up. Christine, from Wolverhampton, led the public campaign for the register in memory of her brother Peter Cox, who died from a brain tumour in 1989 aged 24 and became a donor.
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His family discovered there was no UK-wide central register of people who wanted to donate. They wanted to help stop other families suffering the grief of losing a loved one, and we supported her call. Now, it could not be easier to donate an organ; you can sign up for the NHS register, and tell your relatives of your wishes.
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