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More young organ donors needed to save lives of children waiting

New NHS strategy aims to tackle key barriers and enable more donations to take place

4 March 2019

Children in need of a transplant are waiting longer and dying before they can receive an organ because the number of young organ donors remains static.

More organ donations from children and young people are needed to save the lives of children, babies and even adults waiting for a lifesaving call.

NHS Blood and Transplant’s (NHSBT) first paediatric and neonatal organ donation strategy, which launches on Monday 4 March 2019, aims to make more lifesaving transplants possible, especially for young patients who often need organs matched to their size (1).

There are currently 177 children waiting for an organ transplant in the UK (2). In 2017/18, 17 children tragically died while waiting for an organ donor (3).

There were 57 child donors in 2017/18 whose life saving gift of organ donation made 200 transplants possible, this compares to 55 child donors in 2013/14. During the same period the number of adult organ donors rose quickly with the number of deceased organ donors increasing by a fifth. (4)

The new strategy identifies eight areas of focus to increase organ donation among under 18s, including a series of recommendations for each area. The recommendations include increased support for families throughout the donation process, more dedicated training and support for clinical staff caring for paediatric patients, the development of new screening and assessment processes and continued work with coroners/ Procurator’s Fiscal to enable more donations to proceed.

Matt Hancock, Secretary of State for Health and Social Care said: “It is heartbreaking that hundreds of very ill children and babies are waiting for an organ right now and that last year 17 families went through the unimaginable pain of losing a child while they are waiting for a lifesaving organ.

"I completely understand how difficult it is to even contemplate losing a child, let alone think about what happens afterwards. But we must not shy away from this difficult, and potentially life-saving, conversation. Hundreds of young lives were saved last year because of the selfless actions of 57 families. We must find the strength to have the incredibly difficult conversations that have the potential to save the lives of children and babies."

At the plan’s heart is the ethos that every family facing the death of a child should have the opportunity to explore organ and tissue donation. The strategy aims to embed organ donation, when possible, as a routine end of life choice.

Currently, parents that are asked about organ donation are significantly less likely to donate a child’s organs for lifesaving transplants. Only 48% of families supported donation for a relative aged under 18 last year (2017/18). This compares to an average of 66% families agreeing overall (5).

Anthony Clarkson, Director of Organ Donation and Transplantation at NHS Blood and Transplant, said: “For many children on the transplant waiting list their only hope is that the parent of another child will say ‘yes’ to organ donation at a time of terrible personal grief.

“We want to ensure every family has the chance to make the choice which is right for them and their child, supported by our specialist nurses and the staff caring for them at their hospital.

“We know parents who agree to donate their child’s organs gain great comfort from knowing that their child has saved the lives of other young people and spared another family the awful loss of a child that they have suffered. Right now, not every family is being given this opportunity and we are committed to seeing this change. This strategy is a vital part of our work with our healthcare partners across the NHS to make this happen.”

It is particularly difficult to find a donor for children and babies in need of a heart. The size of the heart is important, meaning a donor of a similar size is needed (1). Those children who need an urgent heart transplant will wait on average two and a half times as long as adults on the urgent waiting list (6).

Jack Brotton is one child currently waiting for a heart transplant. The 12-year-old, from Darlington, was born with a congenital heart defect and has undergone numerous operations over the years. His health has been deteriorating and he’s now developed complications. His only option is to receive a donor heart.

His mum, Sarah Robson, aged 36, said: “It is every mum’s worst nightmare. You’re on a rollercoaster and you don’t know when you’re going to get off or how it will end.

“We’ve always known Jack would need a new heart, with his complications he needs one now, it’s a chance at life.

“He’s only ever been sick, he’d love to play a game of football, just do normal things like any young lad.

“I battle with the fact that someone’s child will have to lose their life for my child to live. They wouldn’t just be saving Jack though, but his mum’s life too, and all our family. What an amazing gift to come from a tragic loss.

“Organ donation is a light in a dark place, a hope for our tomorrows, the gift of life from a stranger, it's so special and precious.”

Children can join the NHS Organ Donor Register, although those with parental responsibility must give consent for donation after they die. Children in Scotland can self-authorise from 12 years of age. Parents can also choose to add their children to the NHS Organ Donor Register at any age.

The Government has announced plans for an opt out system of organ donation in England, to take effect from spring 2020. Under the system, you would be a donor unless you register a decision not to donate. However, the opt out legislation will not apply to children (7).

UK Paediatric and Neonatal Deceased Donation: A Strategic Plan is a collaboration between NHSBT, paediatric and neonatal professionals, retrieval and transplant professionals, donor families and other partners.

Notes

(1) For some children on the waiting list, a young donor is their only hope. Hearts and lungs in particular need to be matched by size because of the limited space inside the chest, and also to ensure the two organs have comparable strength and do not overwhelm or underpower each other.

Some organs are less restricted for transplant. A smaller kidney from a small adult could potentially be transplanted into a toddler, with appropriate planning. Livers can be split and the smaller section can be transplanted into a young child.

(2) Figures from the active transplant waiting list on 31/01/19, these figures fluctuate regularly. There will be other patients waiting who have been temporarily removed from the list for reasons such as illness or holidays.

(3) Figures for 2017/18. Deaths includes those on the waiting list and those removed from the waiting list due to deterioration in their condition.

(4) Pages 4-5, UK Paediatric and Neonatal Deceased Donation – A Strategic Plan.

(5) UK consent rate when the potential donor was aged under 18 2017/18 - 48.3%

UK consent rate when the potential donor was any age 2017/18 - 66%

(6) The overall median waiting time on the urgent heart list before transplant for adults was 29 days in 2017/18. For child heart patients, the median waiting time was 70 days for urgent registrations in 2017/18.

(7) This means under 18s in England. The definition of a child varies in different countries.