Northern Ireland news

‘Let's talk about it' – families urged to discuss organ donation amid steady rise in children waiting on heart transplants

Little Dáithí MacGabhann who has been on the waiting list for a new heart for four years. Picture by Mal McCann.

FIGURES showing a significant increase in children waiting for a heart transplant underline the urgent need for families to have difficult conversations about organ donation.

That’s the message from the family of five-year-old Belfast boy Dáithí Mac Gabhann, who has been on the waiting list for a new heart for four years.

The comments from the ‘Donate4Dáithí’ campaign come as figures from NHS Blood and Transplant revealed the number of children waiting on a heart UK-wide increased year-on-year from 26 in March 2018 to 49 in July 2022.

The NHS body said 36 children received a heart transplant in 2017/18. But in the last four years, that number has averaged between 25 and 26 per year.

New legislation, known as ‘Dáithí’s Law’, is due to become law in Northern Ireland in the Spring of 2023.

The law will introduce an ‘opt-out’ system for organ donation, but only among adults.

The ‘Donate4Dáithí’ campaign said it highlights the need for families to engage in difficult conversations.

Responding to the growing waiting list, Dáithí’s family said: “This is why our campaign cannot afford to lose any momentum. Talking about organ donation can be difficult for people, especially when children are involved.

“However, having conversations with families and parents the past few years we do feel that our society is ready to hear more about paediatric organ donation, and challenge these statistics.

“Having these challenging conversations can create hope for Dáithí and the 48 other children, and all those other people waiting on a life-saving transplant.”

That message has been echoed by Stormont’s Department of Health, which said the figures “underline the urgent need that exists for organ donors to come forward”.

A spokesperson for Robin Swann’s department said: “Dáithí and the other 48 children across the UK who are on the waiting list for heart transplants depend on families, at one of the most painful moments in their lives, to consider making a decision to offer the chance of providing a life-saving opportunity to another child.”

The statement said when Dáithí’s Law comes into operation “it will strengthen the current legislative framework around organ donation and will increase the current rate of consent in the small number of cases in which it is clinically possible for organ donation to proceed after a person’s death”.

In a separate statement, a spokesperson for the UK wide NHS Blood and Transplant said: “There has been an increase in the number of children on the waiting list for a heart transplant, technology like Berlin hearts increases the length of time a patient can wait, giving more time to find a donor.

“The number of children who donate each year is low, at around 50, and the number whose heart is suitable for donation is even lower.

“The size of the heart then needs to be matched to the patient so it is challenging to find hearts for those children waiting.

“Families of children are also less likely to say yes to organ donation.

“We encourage all families to talk about organ donation, with their support we could save even more lives.”

To sign the organ donor register or for more information, visit organdonationni.info.