Stormont's organ donation law named after boy on waiting list for new heart

A major shake-up to organ donation laws in Northern Ireland will be named after a five-year-old who has been waiting for a new heart for most of his life.

The bill, which will be known as the “Daiti Bill”, passed its final reading in the Stormont Assembly on Tuesday.

The new law means that from spring 2023, all adults will be potential donors unless they explicitly opt out.

Five-year-old Daithi McGavan was born with Hypoplastic Left Heart Syndrome and has spent most of his life on a waiting list.

Northern Ireland is the only part of the UK that does not yet have an opt-out system in place.

The bill's passage comes amid ongoing turmoil at Stormont following the resignation of First Minister Paul Givhan last week and the removal of Deputy First Minister Michelle O'Neill from her dual role.

While no new legislation can be introduced, state lawmakers continue to work to advance bills already under consideration in the parliamentary system.

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

“For many of those currently waiting for organ donation or on the waiting list, this will be a life-changing event,” he said.

“We've seen in council what this place can do if it works well and what this place should do if we work together.”

Daithi's father, Martin Mc Gavan, said it had been a difficult day for his family and for the campaign.

“We never expected to see this day in this role and it's surreal to be here watching Daithi's Act being announced. We are so proud of Daithi and all of the work that has been done on this life-saving legislation,” he said.

“Daiti is five years old and has been waiting for a new heart for most of his short life – more than three and a half years.

“I can’t thank Minister Swann enough for passing this into law as an executive bill.

“It was fate that everything came together and this happened today, because there was a time when I thought it would never happen.”

Former state Rep. Joan Dobson, who introduced a similar bill in 2013, said it was an emotional day.

“I think about all the people waiting for an organ transplant and the fact that change is happening and we are at the dawn of a new era,” she said.

“It’s fantastic to have come this far, I may have started the journey but Robin Swann drove the car across the finish line.

“Regardless of how we got here, we have given hope to people waiting for a transplant now and in the future.”

Feargal McKinney, chief executive of the British Heart Foundation Northern Ireland (BHF NI), said it was a “significant day” for organ donation campaigners.

He said there were 134 people in Northern Ireland waiting for an organ transplant, including 15 for a new heart.

“Organ donation is a gift, and today we offer the gift of hope to every person on the transplant waiting list,” he said.

He added: “Changing the law is an important first step, but it's not the end of the effort.”

“What really matters now is that they are provided with the right resources and infrastructure to operate effectively and save lives in the process.”