Transplant children’s choir sing out for more people to talk about organ donation

The hidden impact for more than 7000 people, including 200 children, currently predicted to be in need of a transplant across the UK (1) is being highlighted today during Organ Donation Week (20 to 26 September 2021) by the ‘Harmonies of Hope’ children’s choir with their version of a song called ‘Invisible.’

After a most challenging year for the NHS and people across the world, waiting lists for organs including kidney, heart, liver, lungs are expected to rise and NHS Blood and Transplant is calling for more families to talk and share their organ donation decision to increase the chances of the many children, young people and adults in need of their own life-saving call.

Last year (2020-21) 15 children and 494 adults sadly died while waiting for a transplant (2). Yet only 1% of people die in circumstances where organ donation is possible, making each and every donor precious.

For over a decade, the number of young organ donors has remained at around 50 each year, with just over half of families approached (54% in 2020/21 (3)), agreeing to organ donation.

At the same time, children on the waiting list for an urgent heart transplant face on average waiting two and a half times longer than adults (4).

Those waiting for their donor match, especially in the midst of a pandemic, explain how this can leave them isolated; unable to participate in day-to-day life, missing out on school, special occasions and even the ability to see close family and friends.

The Harmonies of Hope children's choir sing 'Invisible'

The song, ‘Invisible’, chosen by the choir and written by American songwriter Jason Robert Brown, includes the lyrics:

“Here I go – look at me! There’s a lot I can be, but I won’t be invisible… Take down the barricades, I’m coming through! Here I go – now you know! Just ‘cause you can’t see me, It don’t make me invisible.”

The children’s choir, set up by trainee transplant surgeon and King’s College London Research Fellow, Pankaj Chandak, is made up of waiting patients, transplant recipients and family members from Great Ormond Street and Evelina London Children’s Hospitals.

Mr Chandak says:

“Many children, young people and even adults, who are waiting for a transplant tell us that they can often feel invisible or isolated from society, especially at this time when so many transplant patients are having to shield to keep themselves safe. We sing for them, but we also sing as a tribute to all those amazing donors who have helped give our young patients this incredible second chance of life.

“With this song, we hope that our message will be heard loud and clear, encouraging more people to speak with their families and ultimately, save more lives.”

Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation, at NHS Blood and Transplant, says:

“Every day across the UK there are thousands of patients and their families, waiting for that all important life-saving call. Yet, this is often only possible due to the courage of another family receiving some of the hardest news they might ever have to hear.

Even though the law around organ donation has changed to an opt out system for adults in England, Scotland and Wales, it is important that people are aware that families will still always be consulted before organ donation goes ahead.

“For this reason, it is just as important as ever to make your organ donation decision known to your family and friends and leave them certain of what you what to happen in the event of your death.

For children waiting, especially for hearts and lungs, size and strength of the donor organ matters, so their donor organ will need to come from another child.

We urge all family members of all ages, to take a moment this Organ Donation Week to talk and share your decision. We know that families take a great deal of comfort, when they are already aware of what their loved one wanted.”

Health and Social Care Secretary Sajid Javid says:

“Waiting for an organ match can be a challenging and isolating experience, and I want to applaud Harmonies of Hope for their bravery in sharing such powerful accounts of lifesaving transplants.

“It’s vital we do all we can to ensure no child feels invisible as they wait for a match, particularly those families in underrepresented, ethnic minority communities where donation rates are not high.

“This can change and I am urging families up and down the country to have honest and frank conversations this week about organ donations. It’s a decision that could save someone’s life.”

Amelia's story

Amelia Wood from Manby in Lincolnshire became a life-saving organ donor in March 2018 at the age of 11. Tragically Amelia died after being hit by a wheel that had broken off a passing vehicle. Having previously survived childhood cancer, Amelia’s family were well used to time in hospital and explain how this helped their organ donation decision.

Amelia’s mum, Hayley Hodson, says:

“When Amelia was ill, she needed lots of units of blood and platelets and was helped by many people.  When we were told nothing more could be done to help her, I knew that she would want to do the same for others. Having been in hospital we knew what it was like to feel invisible, isolated and helpless. Through organ donation we wanted to give others a chance they wouldn’t otherwise have.

“I would urge all families to sit down and take the time to speak about organ donation today. Amelia walked out of the house to go to school and never came home, this is still so hard to believe but as a family we take strength from knowing she has been able to help other people. Facing the death of your child is the hardest time, but by having the conversation about organ donation today, it is one less thing to consider if the worst should happen.

“Like the members of the choir, we will continue to shout and share Amelia’s story, organ donation is her legacy, and by doing so we will ensure she – like them - remains visible too.”

Find out more about the choir

Notes

1. NHSBT currently estimate that up to 7,000 people are now be now in need of transplant. Official waiting list figures are currently artificially lower, due to the suspension of some patients from the waiting list due to the risks of being immuno-suppressed during the pandemic compared to the ability to continue managing their condition and not going ahead with a transplant at this time. For the most urgent transplants, liver, lung and heart, the waiting lists figures are increasing as fewer transplants are taking place, so fewer patients are moving off the list. The most urgent patients are being prioritised and we are working hard to get them the transplants they need if it is safe to do so. We predict that once active waiting lists are fully restored, that we will see numbers in the region of 7,000 people in need of transplant across the UK.
2. NHSBT annual data
3. NHSBT annual data
4. On average, child heart patients wait for 88 days compared to 35 days for adults, NHSBT data