Campaign highlights need for child organ donors

TEENAGER Nick Chater’s home is in the Falklands Islands but he is currently living in Patchway awaiting a donor kidney.

If a suitable organ is found, Nick will undergo the second kidney transplant of his young life. 

He received a kidney from his father, Tom, when he was four and it lasted ten years. 

Tom said: “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 four and a half years old.

“Approximately six months after the transplant, the kidney stopped altogether but amazingly restarted following dialysis.

 “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 team) made the decision to return to the UK again and come and live in Bristol while we wait for a kidney. 

“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.  

“Nick has peritoneal dialysis which requires him to be connected to a machine for eight hours every night. 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.”

Nick Chater has been waiting since May

Under the UK kidney sharing scheme, one of Nick’s relatives and a family friend  have signed up. Neither  is a suitable match for Nick but both 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.

“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.”

 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. 

 The family is backing the new Waiting to Live campaign, which  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 on the transplant list.”

 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.”