Dáithí's parents "thrilled" with new consultation on organ donation following campaign for change

THE family of a little boy who requires life-saving heart transplant surgery have described a landmark consultation on organ donation as a "great victory" for their campaigning work.

Maírtín Mac Gabhann and his partner Seph Ní Mhealláin from west Belfast have lobbied politicians to overhaul existing laws after their only child, Dáithí (3), was given just a 10 per cent chance of survival at four-days-old due to a rare form of congenital heart disease.

Health minister Robin Swann yesterday announced a consultation for the autumn to bring Northern Ireland into line with England and introduce a soft 'opt-out' system for organ donation.

This means all adults will be considered an organ donor after their death unless they recorded a decision stating otherwise.

It is understood Dáithí Mac Gabhann is one of just two children in the north awaiting a new heart as all other treatment options have been exhausted.

The young boxing fanatic has been the public face of a high-profile campaign to raise awareness around organ donation for over two years. He and his parents have been shielding since the beginning of lockdown.

Speaking to The Irish News shortly after yesterday's announcement, Mr Mac Gabhann said they "absolutely thrilled" at the development.

Last Christmas, he and his son posted a letter to Richard Pengelly, Permanent Secretary at the Department of Health, urging him to act following backing from the main political parties for the soft opt out system.

"We are due to meet the health minister next month and didn't see this coming. I am shocked but delighted. I gave up my job and we've all worked day and night campaigning for change. It's a great victory," Mr Mac Gabhann said.

"Even though we've been shielding, we've used our time to continue the work and are in constant contact with the British Heart Foundation. Dáithí is thriving at the moment and doing really well. Obviously there is anxiety about coming out of lockdown but we're looking forward to it also.

"We will be using the coming months to keep raising awareness and ask people to respond to the consultation."

For Ms Ní Mhealláin, a change to the system will benefit her son and could transform outcomes for hundreds of patients awaiting transplants.

"We're not politicians but this is my way of doing my best for my son. The legislation on abortion and same sex marriage has been changed, can there not be another option for organ donation?"

Around 47 per cent of the north's population are on an organ donation register and there are approximately 112 people waiting on a transplant.

Mr Swann said that while Northern Ireland has an excellent record in organ donation and transplantation, he believes more can be done to increase the number of organs available for people awaiting transplants.

"With many more people willing to consider donating an organ than are actually registered as donors, I have long believed that an opt-out system would be hugely beneficial and ultimately would save lives here.

"It is therefore my intention to consult on policy proposals for the introduction of a soft opt-out system. This would bring us in line with the other countries in the UK. In the meantime, I encourage everyone to discuss their wishes about organ donation with their family and friends."