Northern Ireland

Belfast boy Daithi Mac Gabhann passes 2,000 days on waiting list for new heart

Daithi MacGabhann has been on the organ transplant list since 2018 (Liam McBurney/PA)
Daithi MacGabhann has been on the organ transplant list since 2018 (Liam McBurney/PA)

A Belfast boy who inspired a campaign to change organ donation laws in Northern Ireland has passed the milestone of 2,000 days on a transplant waiting list.

Seven-year-old Daithi Mac Gabhann is battling hypoplastic left heart syndrome and needs a new heart.

His father Mairtin has used the occasion to urge people to sign up to the NHS organ donor register.

Most adults in Northern Ireland are now considered potential organ donors after Daithi’s Law came into effect last year.

The Organ and Tissue Donation (Deemed Consent) legislation changed the way consent is granted.

Adults are now deemed to have given consent as a potential organ donor after their death unless they choose to opt out or are in an excluded group.

Organ and Tissue Donation (Deemed Consent) legislation
Mairtin Mac Gabhann with his son Daithi (Liam McBurney/PA)

Daithi, who was awarded the freedom of Belfast earlier this year, has been on the waiting list for a heart transplant since 2018.

In June he was temporarily suspended from the transplant waiting list, a decision which his father Mairtin said “broke our hearts”.

Mr Mac Gabhann said: “Transplant is currently Daithi’s only hope of survival and to have that taken away from us was devastating.

“Thankfully after all or nothing surgery in July of this year, Daithi is now back and active on the waiting list.

“This was a lesson to us of how fragile Daithi’s condition can be, and how quickly circumstances can change for the worse.

“Although Daithi is currently stable, we feel that time is still not on his side.”

Mr Mac Gabhann added: “Please, take the two minutes and consider joining the NHS Organ Donor Register.

“Encourage your family to sign up, regardless of age. Please don’t give up on Daithi and our campaign.

“While Daithi’s Law is in place, we must continue to take action.

“We are very proud that Daithi’s Law is in place and saving lives, but as a society we can do more.

“No amount of money can save my son’s life, but words and discussions can.

“Share your organ donation decision with loved ones, and let’s work together to save more lives.”

President Biden visit to the island of Ireland
Prime Minister Rishi Sunak met Daithi Mac Gabhann earlier this year (Niall Carson/PA)

There are currently 47 children across the UK on the transplant waiting list for a new heart.

MPs at Westminster last year progressed the stalled legislation on the opt-out donation system in Northern Ireland because the political impasse at Stormont meant local Assembly members were unable to convene to pass the regulations.

Earlier this year Daithi received the Points of Light award which he given personally from Rishi Sunak when the Prime Minister visited Belfast.