Portsmouth boy continues agonising wait for multi organ transplant after suffering from Sepsis for years

Jude, 13, is currently on the repeat multi organ transplant list after suffering from several medical problems when he was young. Mum Kellie said her son had intestinal failure at the age of two and he’s dependent 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,” she added.

"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.” Kellie said Jude first received a transplant in 2018 for his stomach, pancreas, liver, small and large intestine – waiting a total of 875 days. Despite the procedure, he is going to need more transplants in the future.

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"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.” The NHS have launched an awareness campaign – Waiting to Live – to encourage more people to sign up for organ donation.

More than 230 other children in the UK are in urgent need for multi organ transplants. Handmade dolls of these children are being made and 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 the life-giving procedure. Jude’s doll is being held at Kings College Hospital in London.

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Kellie said: “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.” Carly Bambridge, Clinical Nurse Specialist at Paediatric Intestinal transplant at King’s College Hospital, added: “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.” 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.

“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.”