King’s hosts doll representing child in need of a multi organ transplant

18 December 2023 - The Trust is supporting a new campaign to highlight children ‘Waiting to Live’

Like most children, Jude from Portsmouth cannot wait for Christmas. But there is something he wants even more than a visit from Santa: a life-saving organ transplant. Jude and more than 230 other children in the UK urgently need this precious and ultimate gift of life if they are to see more Christmases.

Now, in a bid to raise vital awareness of the need for more child organ donors, a powerful campaign has been launched that will see the children transformed into handmade dolls that will be placed across the country. Each doll will wear a badge inviting people passing by to scan a QR code and hear stories of children waiting for transplants from across the UK.

Jude’s doll is being hosted by King’s College Hospital NHS Foundation Trust, and 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.

Jude, aged 13, received a transplant five years ago (stomach, pancreas, liver, small and large intestine). Currently he has been listed for a repeat multi organ transplant, the same organs again plus abdominal wall, after complications with his first transplant.

He lives with his mum, Kellie, in Portsmouth. She says: “Jude had intestinal failure aged two, leaving him dependant on intravenous nutrition. He has suffered recurrent bouts of sepsis, keeping him in hospital for very long periods of time so was listed for a multi organ transplant.

“He was transplanted in 2018, he waited 875 days for his first transplant. Currently he has been listed for repeat multi-visceral transplant including abdominal wall after a huge bowel obstruction in March of this year causing him to lose function of the graft.

“He has no abdominal muscles so the stomas on his tummy are not only unsightly but also at risk of injury. As a 13 year old boy now this is extremely hard for his self-image and anxiety, not only does he have to cope with these issues, he is dependent on IV nutrition and fluid, medication and nursing care. He has three brothers whose lives have been hugely impacted.

“Jude had five years, a snippet of what normal life can look like. A transplant isn’t a cure but a choice that can give a child or adult the gift of life. Without a transplant Jude’s life looks very different to how it once was.

“It’s a long agonising wait for the gift of life. Would you accept an organ donation for you or your child if your/their life depended on it? If you are prepared to say yes then you really should be on that list.”

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.

King’s College Hospital is supporting the Waiting to Live campaign and hosting Jude’s doll to raise awareness. Carly Bambridge, Clinical Nurse Specialist- Paediatric Intestinal transplant at King’s College Hospital said: “”We care for children and young people, and their families from the moment they go on the transplant waiting list until a suitable donor organ is found. Their patience, resilience and hope while they wait for life-changing news is inspiring to us all. Some children wait days, months or even years for an organ donation.

“The families who make the incredible decision to donate a loved one’s organs and make a difference to a child’s life are giving the most amazing gift. We are so grateful to them.”

Waiting to Live builds on the Consider This campaign which earlier this year used radio and newspaper adverts to make a powerful appeal on behalf of the parents of 3-year-old Ralph who needs a multi-organ transplant.

Other children who feature campaign alongside Ralph and Jude, include 7-year-old Daithi who has been waiting for a heart transplant for 2000 days, Sophie (aged 10) who is waiting for lungs, as well as Uqbah (14) and Pablo (13) who both need kidneys and could also be saved by the generosity of a living adult donor.

The campaign is supported by NHS Blood and Transplant and has been spearheaded by WPP agencies Wunderman Thompson, with the help of the global communications agency BCW.

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 https://www.youtube.com/watch?v=8sDVRiA5vw4