Nick, and family support transplant campaign

(Left to Right) Dad Tom, Nick, Mum Jane and Brother Ben.

Nick, 16, is one of more than 230 other children in the UK urgently who needs the precious and ultimate gift of life of an organ transplant.

In a bid to raise vital awareness of the need for more child organ donors, a powerful campaign – Waiting to Live - has been launched that will see the children transformed into dolls that will be placed across the country. Each doll will wear a badge inviting people passing by to scan a QR code and find out more about children waiting for transplants from across the UK.

It is hoped that the dolls and the real-life children’s stories will inspire more parents and families to consider organ donation and add themselves and their children onto the NHS Organ Donor Register.

Three general dolls (not linked to a specific child) are on display in the Bristol area to raise awareness, and local teen Nick and his family are sharing his story to highlight what it is like for children awaiting an organ transplant.

A 'Waiting to Live' transplant doll at the Bristol Royal Hospital for Children

Nick, aged 16, is from the Falkland Islands, but currently living in Bristol while he undergoes dialysis and waits to receive a second kidney transplant. Nick first had a kidney transplant aged four, after his dad, Tom, donated to him. This transplant lasted 10 years, but then started to fail.

Nick has joined the UK kidney sharing scheme with a relative and a family friend. Neither are a suitable match for Nick but have offered to donate to someone else, if their donor (who is not a match for them) is able to give to Nick in return. Nick is also on the waiting list for a deceased donor.

Nick’s dad, Tom Chater, who is married to Jane and they have an older son, Ben, 17, says: “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.

“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 (dialysis is not an option there) we (guided by the University Hospitals Bristol and Weston NHS Foundation (UHBW) team) 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.

“On arrival in the UK in May Nick went straight onto the waiting list for a kidney. The wait sometimes feels never ending. We’ve had to move away from our normal lives and spend a large amount of time with our family not being able to be together. There is no doubt that, as with anything, you get into a rhythm of the daily routine.

“Nick has peritoneal dialysis which requires him to be connected to a machine for 8 hours every night. This machine enables Nick to have his dialysis at home and not have to spend a lot of time every week in hospital but it does mean that the night times can be disturbed. Nick is unbelievably resilient and accepting of the situation he is in but it is very difficult for him.

“A transplant means that Nick will have a lot more energy and be able to live an almost normal life. It will mean that he will be able to return to the Falkland Islands again and to enjoy many things to the same degree that family and friends do without having to constantly think about what he is eating or drinking or how far he is going.

“I would like to think that any parent would consider live organ donation. We both got tested for suitability and ultimately Nick received one of my kidneys. It was the best thing I have ever done, it not only gave Nick literally his life but as a family gave us all our lives back.

“Please not only get registered but consider donating yourself and make sure you tell your family your wish to donate. The beneficial impact of receiving an organ donation is unmeasurable to the patient and their immediate family and friends.”

Nick at the Bristol Royal Hospital for Children

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% 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.

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.”

Angie Scales, Lead Nurse for Paediatric Organ Donation at NHS Blood and Transplant, said: “For many children 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. 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.”

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. And watch the campaign film.