Little boy from Isle of Man given chance at life without dialysis, thanks to kidney donor

Video report by ITV Granada Reports correspondent Ann O'Connor.

A little boy who has spent most of his life living 140 miles away from home in hospital can now come home after having a kidney transplant - just in time for his third birthday.

Aedan Klieve was born with severe kidney disease and has been receiving medication and dialysis at Alder Hey Children’s Hospital in Liverpool in order to keep him alive.

When he was born, his parents were told he may not survive.

Mum Shirley Klieve said: "He wasn't expected to leave the delivery room alive, which was traumatic, but thankfully he came out screaming.

"When you're pregnant all you can think about is hearing that cry when the baby is born."

At just one-day-old, Aedan was transferred to Alder Hey and has spent almost every day there since, enduring surgery and countless hours on dialysis.

His parents prepared for the worst. Shirley said: "We were under palliative care and had written an end of life plan - it was horrible dark, dark days.

"We've lost count of how many operations he's had, and every birthday has been spent in hospital."

But thanks to an organ donor, Aedan has been given the chance to survive and to thrive.

Neither Aedan's mum Shirley, or his father Paul were a suitable match as a donor, and the couple were praying one would be found.

"In August 2023, we received the call we’d been nervously waiting for and prayed would come," Shirley said.

"There was a kidney waiting for Aedan.

"We grabbed our bags and Aedan and his dad, Paul, went to hospital by air ambulance and I followed with all our stuff closely behind.

"The surgery took approximately six hours and everything went smoothly.

"The kidney was a great match and Aedan was well, and sat up in his cot, giggling and laughing on just day five. I couldn’t believe it.”

Owen Morris, Renal Transplant Nurse Specialist explained that without a transplant, Aedan would have faced dialysis for the rest of his life.

“Aedan initially had other treatments for his kidney failure including peritoneal dialysis and haemodiaylsis," he said.

"However rather than a lifetime of dialysis, his best option was always a transplant and we are obviously delighted that he has been given a new kidney thanks to an organ donor.”

Aedan's family now want to raise awareness of how organ donors can save and transform lives.

NHS Blood and Transplant says there are around 7,000 people including children, currently needing a transplant, the highest number in almost a decade.

One dies every day because a donor cannot be found.

30 million people have recorded their organ donation decision on the NHS Organ Donor Register, representing approximately 45% of the total population, but clinicians have warned that opportunities for life-saving transplants are still been missed.

Even though the law around organ donation has now changed to an 'opt out 'system across England, Scotland and Wales, family members will always be consulted before organ donation goes ahead.

NHS Blood and Transplant are asking people to register their decision on the NHS Organ Donor Register and make sure that friends and family are aware.

They say that shows that organ donation is still most likely to go ahead when a potential donor has confirmed their decision to donate on the Organ Donor Register, with nine out of 10 families supporting donation when their loved one has confirmed their decision on the register.

In 2024 a new link will appear in the passport application process to enable adults applying to renew their passport to confirm their support for organ donation on the NHS Organ Donor Register.

Consultant Dr Henry Morgan treated Aedan at Alder Hey and said: "it's a big forward step for Aeden and there is now a big light at the end of the tunnel, which a few months ago was a very dim light."

Dad Paul added: “It was touch and go for Aedan, without donors our little boy wouldn’t be here celebrating his third birthday.”

Shirley said: "It's like a cloud has been lifted. We went home at the weekend - it was amazing to have Aedan there and to sleep in our own beds and wake up under the same roof.

“We are so grateful to the renal and dialysis team at Alder Hey in particular, who looked after us so well, during our lengthy stays and helped us get Aedan ready for his transplant.

"We don’t know what we would have done without them.”

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