NHS "Waiting to Live" campaign highlights need for child organ donors
Nick in Bristol is one of more than 200 under 18s waiting for a transplant
As most of us itch to open presents tomorrow, 12 children across the South West are wishing for the gift of life.
That's how many in our region are on the waiting list for an organ donation.
There's more than 230 waiting across the country.
As part of an NHS campaign called "Waiting to Live" aiming to highlight the stories of those waiting, Hits Radio has spoken to 16-year-old Nick in Bristol and his dad Tom.
They have moved back to the UK from their home in the Falkland Islands to wait for a transplant as such treatment is not available there.
Nick has already had one kidney transplant at the age of four but is now in desperate need of another, with that one starting to fail.
“We actually had to come to the UK for Nick to be born and didn’t get home to live for over five years until he had his first transplant at 4 and a half years old," Tom said.
“Approximately 6 months after the transplant the kidney stopped altogether but amazingly restarted following dialysis.
"The kidney continued to function but at a reduced amount which meant that we lived from blood test to blood test and were always very careful with his diet in order to stretch out the life of the kidney for as long as possible.
“When his kidney started to deteriorate again to the point that we could not safely live in the Falklands we made the decision to return to the UK again and come and live in Bristol while we wait for a kidney.
"Amazingly the kidney has lasted for over ten years from the time that it stopped functioning properly."
Such is Nick's condition, he has to be connected to a dialysis machine for eight hours every night.
A transplant would give him more energy and allow him to live a normal life.
A lack of donors
Currently, there is a significant lack of child organ donors resulting in children and their families waiting for a life-saving donation that tragically sometimes doesn’t come.
In 2021/22, just 52 per cent of families who were approached about organ donation gave consent for their child’s organs to be donated.
This represented just 40 organ donors under the age of 18.
However, in cases where a child was already registered on the NHS Organ Donor Register, no family refused donation.
To address this imbalance, the new campaign, Waiting to Live, aims to encourage parents and families to consider organ donation and, it is hoped, register themselves and their children as donors.
As part of the campaign dolls are being created of children like Nick, which will be placed on display across the country.
Each doll will wear a badge inviting people to scan a QR code and find out more about their stories.
Three sites across Bristol are hosting dolls, each representing a child on the waiting list, UHBW’s Bristol Royal Hospital for Children and NHS Blood and Transplant’s Filton and Stoke Gifford centres.
Joanna Woodland, Paediatric Renal Clinical Nurse Specialist, at UHBW said: “The uncertainty of not knowing when a suitable donor will be found is challenging and we are moved by families’ strength, optimism and resilience while waiting on the transplant list.
“It is inspiring to see the happiness in the patients we care for and their families when they are told an organ has been found for them and knowing the future possibilities, and opportunities this will provide for them.
“We are proud to support the Waiting to Live campaign and hope it will encourage parents and families to consider organ donation.”
To learn more about the children waiting for transplants, hear children’s stories and add yourself and your child/children to the NHS Organ Donor Register, use your phone to search for the Waiting to Live campaign, or click here.