Families urged to talk about organ donation and register their decision as many patients wait for a lifesaving transplant

Today (Monday 26 September) marks the start of Organ Donation Week, a national celebration of organ and tissue donation and transplantation which saves and transforms hundreds of lives each year.

During Organ Donation Week, the Public Health Agency is urging people to register their donation decision and talk to their families about organ donation as more than 6,500 people are actively waiting for a transplant across the UK, 144 of those in Northern Ireland.

Last year, 100 people in Northern Ireland waiting for an organ transplant had their lives saved by the generosity of deceased organ donors and their families who gave the gift of life. A further 61 patients received a life-saving living transplant.

There were 55 incredible families in Northern Ireland who supported the life-saving gift of organ donation from their loved one last year. Organ donation is a most precious gift and the selfless act of donors and their families is at the heart of Organ Donation Week.

One family who are eternally grateful for the ‘gift of life’, is the Kelly family. Ethel Kelly’s daughter Grace required a life-saving liver transplant following the diagnosis of a tumour in her liver at just 16 weeks old.  Mum Ethel describes their journey:

“A scan after the 3rd cycle of chemo showed that the cancer was spreading, and our only hope for her was a liver transplant. After a rigorous week of transplant assessment where all aspects were discussed, Grace was listed. We were advised that as a child with cancer she would be on the super urgent list so we needed to be ready as the call could come quickly.

3 days later the phone rang in the middle of the night and we knew this was the call. We had to be at the airport in 2 hours. We were transferred by air ambulance to Birmingham. Her surgery lasted 10 hours and the news that she was out of theatre was quickly followed by concern that the liver was not working due to clots in her new liver. Attempts to resolve this failed and she needed resuscitation following blood loss - this all led her to be re listed for a second liver which came 2 days later.

Another long operation but the difference when she got back to PICU was remarkable. She was Much more stable and her liver numbers improved day on day. Grace was discharged on 23^rd December so was the best Christmas present we could have hoped for! 

Describing how life feels now Ethel said:

“Fast forward 9 years and despite a flew blips she is doing marvellously well. She is the beating heart of the family and makes us so proud of her zest for life. She loves a challenge and is so determined to be the very best she can be.

She is living and loving a life which would never have been possible without her donors and donor family’s decision at the most challenging time of their lives. We can never express our thanks enough but can assure them Grace is living the best life because of their generosity. 

We can only encourage everyone to have the discussion with family to give the gift of life to others if placed in this devastating position. Grace would not be here today if two brave families had not consented. She is truly our AMAZING Grace.”

Stories like Grace’s highlight how precious each and every donor is, however only around one in 100 people who die in the UK are usually able to donate their organs after death. Donors are typically those who have died in a hospital intensive care unit or emergency department due to brain injuries, cardiac arrest or other trauma. Therefore, it is vital that everyone who wants to be a donor registers their decision on the NHS Organ Donor Register and talks it through with their families who will be expected to support their decision should the time come.

Families are far more likely to support donation when they already knew it was what their relative wanted. 9 out of 10 families honour their family member’s decision when the donor had either proactively registered their decision to donate on the NHS Organ Donor Register or spoken with their family.

With 52% of people in Northern Ireland on the Organ Donor Register, initiatives like Organ Donation Week are an important opportunity to raise awareness, particularly when 90% of people support organ donation here.

Catherine Coyle, Organ Donation lead at Public Health Agency said:

“Family conversations around organ donation are so important to ensure they know what you would want to happen. Even though the law around organ donation is changing to an ‘opt out’ system in spring next year, family members will still always be involved before organ donation goes ahead so that they can support their loves one’s decision. This means it is important to ensure your friends and family know what you want.

“We urge family members of all ages to take a moment this Organ Donation Week to register and share your decision. If the time comes, we know families find the organ donation conversation much easier if they already know what their relative wanted.”