Stormont organ donation laws to be named for boy on waiting list for new heart

Daithi Mac Gabhann, from Belfast, was born with hypoplastic left heart syndrome and has been on a waiting list for most of his life.

Daithi Mac Gabhann on the steps of Parliament Buildings at Stormont (Liam McBurney/PA)

A major reform of organ donation legislation in Northern Ireland is to be named for a five-year-old who has been waiting most of his life for a new heart.

The legislation, which will become known as Daithi’s Law passed its final hurdle in the Stormont Assembly on Tuesday.

The new legislation will mean that from Spring 2023 all adults become potential donors unless they specifically opt out.

Daithi Mac Gabhann, five, was born with hypoplastic left heart syndrome and has been on a waiting list for most of his life.

Northern Ireland has been the only part of the UK where the opt-out system is not already in place.

The passage of the Bill comes amid chaotic times at Stormont following the resignation of First Minister Paul Givan last week, which also removed deputy First Minister Michelle O’Neill from the shared office.

While no new legislation can be brought, MLAs are continuing to work to progress Bills already in the Assembly system

Health Minister Robin Swann, who brought the Organ and Tissue (Deemed Consent) Bill, described it as a “good day for politics in Northern Ireland”.

“It will be life-changing for many people who are waiting on organ donations or those on waiting lists at this minute in time,” he said.

“We have seen in the chamber what this place can do when it works and what this place should be doing when it can work together.”

Daithi’s father, Mairtin Mac Gabhann, said it was a massive day for his family and the campaign.

“We didn’t think we would see this day in this mandate, and to be here for Daithi’s Law being announced is absolutely incredible, we’re just so proud of Daithi and all the work that has gone in for this life-saving legislation,” he said.

“Daithi is five years old and has been on the waiting list for a new heart for over three and a half years, most of his short life.

“We can’t thank Minister Swann enough for bringing it through as an Executive Bill.

“Everything has kind of clicked together and it is fate that this is going through today because there was a time we didn’t think it had a chance of going through.”

Jo-Anne Dobson, a former MLA who proposed a similar Bill in 2013, said it has been an emotional day.

“I’m thinking of all the people waiting for an organ and the fact that we have change, we have the dawn of a new era,” she said.

“It’s brilliant to get here, I may have started the journey, but Robin Swann has driven the car over the finish line.

“No matter how we have got here, now we have given hope for those waiting for a transplant currently and will be in the future.”

Head of British Heart Foundation Northern Ireland (BHF NI) Fearghal McKinney described a “momentous day” for organ donation campaigners.

He said there are 134 people in Northern Ireland waiting for an organ transplant, 15 of whom are waiting for a new heart.

“Organ donation is a gift and today we are offering all of those on the transplant waiting list the gift of hope,” he said.

He added: “The law change will be a vital first step, but the hard work doesn’t stop here.

“What really matters now is for it to be given the right resources and infrastructure to work effectively and save lives in the process.”