Baby girl's parents issue desperate pleas for heart donor as she fights for her life in intensive care

Little Rory Fletcher has been in the intensive care unit of Freeman Hospital in Newcastle since the day she was born, suffering from dilated cardiomyopathy.

Her condition means the heart’s left ventricle is stretched and enlarged, and cannot pump blood properly.

She is currently on a mechanical heart pump and listed on an urgent transplant waiting list, as her parents Becks and Toby wait for a donor organ to become available.

Their plea comes after the UK transplant waiting list reached record levels with 8,000 people still waiting for a lifesaving transplant.

Figures published by NHS Blood and Transplant (NHSBT) also showed the number of deceased organ donors dropped by 2% last year.

But Becks and Toby, from Knutsford in Cheshire, have not given up hope.

“We know Rory is one of the smallest children on the transplant waiting list, which means she is not ‘competing’ against others but on the other hand not many organs are donated from babies, so there are less hearts available in her size,” said 31-year-old mother Becks.

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"We would just be so grateful to the donor family if she had a transplant.

"It’s a horrible situation for anyone that loses a child, and not one you ever want to think about.

"But I try to think of it that, if you can come away and turn something negative into something positive for another family, why wouldn’t you?

"It would mean everything to us."

Becks, a public relations director, said she had “the smoothest of pregnancies” before giving birth by C-section, adding: “As soon as she was born it was clear something was wrong.

"We didn’t know if we were expecting a girl or a boy, and by the time they’d announced she was a girl, she’d turned blue and was whisked away by the nurses.

"Now, I am in ICU with her pretty much all day, every day. Toby has had to go back to work, but he visits as much as he can around that. It has just totally blown our world apart."

More than 12,000 people in the UK have died or been removed from the transplant waiting list over the past 10 years before receiving the lifesaving organs they needed, NHSBT said on Monday.

But over the same period of time, more than 44,000 lives have also been saved or improved through deceased and living donor organ transplants.

For baby Rory, it would mean being able to start living a “normal life”, her mother said.

"To get a heart and take Rory home would just be incredible,” Becks said.

"At this point, we’d love to just have any glimpse of a normal life – taking her on a walk out of the hospital, picking her up without worrying about machines and wires, even just hearing her laugh or cry.

"There are so many milestones and normal things we’ve never experienced.”

On average, more than three people a day died or became too ill for a transplant in the UK over the past decade, NHSBT figures have also shown.

To mark Organ Donation Week starting on Monday, NHSBT has urged people to confirm their decision to be an organ donor on the NHS Organ Donor Register.

Last year, 173 families overruled their relative’s registered or expressed decision to donate, NHSBT said on Monday.

In a further 520 cases, families did not support donation where the law presumes consent – meaning their loved one had not registered to opt out but also had not expressed any decision.