'I'm forever grateful for my girl's donated heart'

Ahead of Organ Donation Week, two mothers whose children were involved in transplants share their stories from either side of the experience.

Seven-year-old Evie is thriving.

She is doing well at school, enjoys playing with friends and is keen to give everything a go, her mother Chloe Green says.

But for her daughter to be doing so well today, another family had to go through the unimaginable pain of losing their child.

When she was three years old, Evie needed a new heart.

The toddler from Middlesbrough spent 16 months in hospital in Newcastle being kept alive by a Berlin Heart, a mechanical pump which she had to be permanently attached to.

Evie featured in a project by Consett-based photographer Debbie Todd, taking before and after pictures of children awaiting life-saving organs.

Sadly, Debbie says, not all the children got their "after" picture.

Evie's wait was so long she ended up having three "before" photos taken, images treasured by Chloe as showing the journey her daughter had to undertake.

Chloe, 31, and her husband David, 38, would swap places by her hospital bedside, juggling looking after her with work and caring for their other child, Evie's brother Theo, who is a year older than his sister.

Chloe says she tried to stay optimistic, focusing on "small wins all the time", but her mindset changed when Evie had to be attached to the machine.

"I was watching her dying," Chloe says. "Suddenly my priority was 'we need a new heart'."

She understood what that meant for any potential donor.

"I did feel I was in a moral quandary," Chloe says. "It comes with a lot of guilt.

"Of course you are not wanting someone else to die, but the doctors said we could only think of what we needed for Evie's treatment plan, you have to have that boundary."

They were waiting for another family to do an "amazing thing", Chloe says, and the appreciation never fades.

"Whenever I reflect back or see Evie hitting a milestone, I think of that [donor] child," she says.

"I almost feel like they are part of our family, they are coming along with us."

The donated heart was a "perfect match" for Evie and has "done so much for her", Chloe says.

She acknowledges that may not fully comfort the donor's family but might give them some peace to know.

Chloe does not know who the donor was but has written a letter to their family, there for them to read should they ever choose to.

"If I could speak to the donor's family, I would just be forever thanking them," Chloe says.

"We would love to share everything about Evie's life if they were willing to, but of course it has to be their choice.

"It would just be constant gratitude. I am forever grateful to them."

Anna-Louise Bates knows what it is like to receive such a letter.

In 2015, her husband Stuart and seven-year-old son Fraser were killed when they were hit by a car near their home in Talbot Green in south Wales.

Because he died at the scene, Stuart, who had signed the organ registry and wanted to be a donor, was unable to be one.

But Fraser's heart, lungs, liver and kidneys were given to three other children and an adult, with his heart going to a young twin boy from Hartlepool called Roman.

"I won't forget the first letter I ever received from his mum," Anna-Louise says. "How the loss of my boy had allowed hers to grow.

"To know Fraser lives on has given me so much hope, it was like they didn't die in vain.

"Life is a gift and the biggest gift you can give is life."

She said milestones such as Fraser's recent 18th birthday were "incredibly difficult", but hearing of Roman enjoying life and having "10 years' worth of memories and love" gave "some comfort".

Anna-Louise founded Believe Organ Donor Support, to encourage people to think about organ donation and discuss it with their loved ones.

At Stuart's insistence, she and her husband had the "icky" conversation just two weeks before the crash, and Anna-Louise is so grateful they did.

It meant in that "24 hours of hell", the questions around organ donation were the "only time I didn't have to think", she says.

Knowing her husband's wishes and how her son was meant she felt confident to agree to donate, with the lives Fraser saved "a testament to the big heart he had".

She has in the years since thought about it from the recipient's point of view, she says, about how a parent might feel knowing a "young child passed away for you to have that organ".

"The way I reconcile that is I am just pleased Fraser's gift has allowed a child to live on," she says.

"He gave the greatest gift and especially because this was so close to Christmas, he gave the gift of life that he could no longer be part of."

She says she is not telling everyone they have to be a donor, but is encouraging people to "have those conversations" and register their preference on the organ donation registry so their loved ones know their wishes.

Anna-Louise has spoken to many children since and found they were "really open" to organ donation and more willing to discuss it than their adult parents, she says.

According to the NHS, some 408 people died last year while on the UK transplant waiting list, with Anna-Louise saying just 1% of people end up being eligible to be a donor.

Since 2015 in Wales, 2020 in England and 2021 in Scotland, authorities have operated an opt-out service, where adults are presumed to be donors unless they declare otherwise on the NHS Organ Donation Register.

But families will still be consulted and can object.

The system does not apply to people under 18 and decisions regarding children are made by their families, although anyone of any age can add themselves to the register.

Chloe in Middlesbrough is also asking people to think about it in advance, what would they do if the unthinkable happened?

"You do not want to think about your child dying, I understand that" she says.

"But look at the children doing well, what can come from thinking about it and making that decision to donate.

"I totally respect people's choices.

"It's just about thinking and talking about it."

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