GOSH patients take part in organ donation campaign

Amelia, Ralph and Sophie are part of the Waiting to Live campaign, which will see 230 handmade dolls placed around the UK to represent children who are on the organ donation waiting list. It’s hoped the presence of the dolls will spark conversations about organ donation.

Some of the dolls have been created to include elements our GOSH patients. Amelia’s doll has a pink bunny, Ralph’s doll has a green car and Sophie’s doll has a pink unicorn.

The campaign follows the Consider This campaign earlier this year, which focused on Ralph’s story.

Ralph, aged three, was diagnosed with liver cancer in January. He hadn’t shown many symptoms but following a visit to the GP, an ultrasound found that he had a tumour in his liver.

He underwent eight rounds of chemotherapy at GOSH. In May, his dad Graham was due to donate part of his liver to Ralph during an operation at King’s College Hospital, London. The day before the operation the family were told an alternative liver donation had been found and so Ralph’s operation began.

The team of clinicians, however, took the difficult decision not to continue the operation as they feared they would not be able to remove all of the cancer and that Ralph must instead have a multi-organ transplant for his liver, small intestine and pancreas. Unlike the liver, which can be cut down to size from an adult donor, the small intestine needs to be a size match to Ralph and so the wait could be very long.

Mum Katie said: “We never ever imagined this would happen to our gorgeous little boy, it’s unthinkable, it sounds like a cliché but you think it’ll never happen to us.’

“When Ralph was in intensive care at GOSH, something that really hit home was a picture of a family who had saved a child’s life by donating a heart. That story really stayed with me, I can picture them now.

“We are sharing our story in the hope of raising awareness for paediatric organ donation to help Ralph and all of the other 233 children waiting for a lifesaving organ and encourage more parents to consider this precious gift.

“At the moment, everything is a balance. If his tumour marker rises he’ll need chemotherapy but that will take him off the list for transplant and has a lot of nasty side effects, so it’s a balance between being on the waiting list and stopping the cancer spreading.

"To receive this transplant would be a miracle. It won’t be an easy life after the transplant, short and long term risk of rejection, lifelong medication and he'll be very immunocompromised, but it’ll potentially save his life.

“For us, finding a donor in time is everything.”

Sophie, aged 10, from Dorset, has been treated at GOSH since she was 14 months old and in May this year went on the waiting list for a lung transplant.

She said: “I’ve been waiting for a lung transplant for five months and I will also need to have a surgery on my heart at the same time. It’s a big thing but will mean my life will be better in the future.  I will have to go to London to have my transplant, I live in Dorset and there are lots of horses here, which I love because they are my favourite animal.”

Her mum Laura said: “It’s hard. The thought is never really out of your mind. You try to live life and try to make plans but it’s really difficult as everything could change in a split second.

“You have to try and live while on the list because otherwise you’ll spend so long waiting, doing nothing, but you’ve also got to be ready at the drop of a hat.”

The family are taking part in the campaign to raise awareness. Laura said: “We want people to talk about child organ donation. Whatever people decide is absolutely their decision, we’d never try to change people’s minds, we just want people to have a conversation before it gets to the point they need to make a decision. It’s about making an informed decision.”

Amelia, aged two, of Chippenham, has been on the waiting list for a heart transplant for just over a year. She has been on a Berlin Heart, a machine which pumps blood around the body, throughout this period. It means she has to stay at GOSH, and often refers to Bear Ward as her ‘home.’

Her little sister, Blossom, her mum Jodie and dad Rich stay as close to the hospital as possible, and haven’t lived at home for over a year.

Her mum Jodie said: “It’s been a rollercoaster. We are up with her and down with her, but you just do it.

“Lots of people say ’how do you cope’ and I say ‘ask me when we get home’, at the minute we’re just being parents and getting through.”

The family, including Blossom, have signed up to the organ donation register.

Jodie said: “We just want people to have a conversation. We’ve all got our pink organ donation cards, even Blossom. We know when the worst happens it’s such a sad loss for a family, but it could be a good ending for so many children.”

Sarah Mead-Regan, a Clinical Nurse Specialist and Transplant Co-ordinator at GOSH, said: "We support children and young people, and their families from the moment they go on the transplant waiting list until a suitable donor organ is found - this can be a matter of days, months or years.

“Every day I’m inspired by how resilient, hopeful and strong the families we care for are, but the waiting is unbearably hard for them.

“We are so grateful to the families who make the incredible decision to donate their loved one’s organs, and so privileged to see the difference it makes to so many children.”

The Waiting to Live campaign, by NHS Blood and Transplant and Wunderman Thompson UK, launched today.

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.

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.

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 and 22, just 52 percent 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.

Visit NHS Organ Donation for more information.