Poole child in need of a lung transplant joins national campaign

A 10-year-old from Poole has joined a national campaign highlighting the number of children on the organ donor waiting list.

Sophie Gilbert needs a lung transplant and is one of over 230 young people currently on the transplant list.

In a bid to raise vital awareness of the need for more child organ donors, a powerful campaign called Waiting To Live 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.

Sophie’s doll is being hosted by Great Ormond Street Hospital in London, which will carry out her double lung transplant when she gets her call. 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.

Sophie, aged 10, has been waiting for a lung transplant, which will also include heart surgery she needs, since May 2023. She was diagnosed with health problems in the womb.

Her mum, Laura, says: “Sophie was diagnosed ante-natally with problems with her arteries and a large heart defect. She underwent artery surgery at eight weeks old, and was due full cardiac repair before being diagnosed with high blood pressure in the lungs at 14 months. This meant that any further surgical repair was too risky and we focused treatment on controlling things with medication.

“As Sophie has grown the artery surgery is now restrictive and she cannot have any further treatment for her lung condition in this situation. So before her heart function deteriorates we have been listed for a lung transplant and cardiac repair and hope the two of these combined will work in her favour for the future.

“Waiting is hard to describe, you obviously have to try and live life on the list but the thought that Sophie's life could change at any moment never leaves your mind. We try to do as much 'normal' things and still make memories, but you've got to be ready at any moment.

“Sophie gets extremely tired, suffers from awful headaches/migraines and is very restricted and limited from a physical capacity at this stage. She misses out on a lot of things with her friends and at school because she's to poorly to do a lot.

“It is such a hard ask, to ask parents at such a traumatic time to consider organ donation. I can't imagine having to have that conversation, even though we've had to have the opposite conversation, that for a longer term future we need someone to pass away and agree for donation, and if that doesn't happen then we have no more treatment available.

“I just encourage the conversation to be had at a less emotive time, with children, if of appropriate age, and for parents to have the discussion at time they can think clearly about any decision they might choose to make, making an informed decision before they are in a situation.

“I also think it's important to highlight that if they themselves or even if their child became suddenly unwell, because that does happen, that they might find themselves on the other side, needing an organ donation for a chance of a future and how would they feel in that situation.”

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.

The campaign has the backing of hospitals across the UK, including Great Ormond Street Hospital, which is home to four of the dolls, including Sophie

Sarah Mead-Regan, a Clinical Nurse Specialist and Transplant Co-ordinator at Great Ormond Street Hospital, 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.”

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.”