Campaigning family hails 'emotional day' over organ donation law

Daithi MacGabhann, with father Mairtin and his partner Seph Ni Mheallain, at Stormont Castle. PA photo

By Jonathan McCambridge, PA

The father of a four-year-old boy who needs a new heart has hailed an “emotional day” after Stormont leaders agreed to progress a long-awaited law on opt-out organ donation in Northern Ireland.

It was announced the legislation had been given approval to proceed by the Executive on Thursday by way of urgent procedure to the Northern Ireland Assembly.

The Bill would mean people automatically become donors unless they specifically say otherwise.

Health Minister Robin Swann said be believes the move could change 180 lives a year.

Northern Ireland remains the last part of the UK without a soft opt-out system.

Mairtin MacGabhann, whose four-year-old son Daithi has been waiting for a new heart for three years and who has campaigned on the issue, said his boy’s “wee smile” has united politicians at Stormont.

Daithi and his parents met with Mr Swann, First Minister Paul Givan and deputy First Minister Michelle O’Neill at Stormont on Friday.

Daithi MacGabhann, with father Mairtin and his partner Seph Ni Mheallain, meeting Health Minister Robin Swann, deputy First Minister Michelle O'Neill and First Minister Paul Givan at Stormont Castle. PA photo

Mr MacGabhann said: “It is a very emotional day but it is also a very happy day. We got the phone call late last night to say that this has been given Executive approval.

“Last night we were shaking with happiness. We are just so happy that this potential life-saving legislation has now got the opportunity to go to the Executive floor. We are very confident with the support that we have gathered over the last few years that this will go through.

“That, for us, is hope. Hope is all we’ve ever had and we are so proud of our wee Daithi that his wee smile has united all those on the hill.”

Mr MacGabhann added: “It has been a very difficult journey for us.

“Daithi had his first open heart surgery when he was only four days old and his second by the time he was 10 days old and was given under a 10% chance of survival.

“Four years later we are not where we want to be because he needs the gift of a new heart and it has been frustrating over the last number of years because we feel like we’ve been shouting from the rooftops.”

Mr Givan had originally been accused by the Health Minister of blocking the legislation following Thursday’s Executive meeting, but later announced that it would proceed following engagement with campaigners.

He said: “It became very clear to me that we needed to get progress on this issue. Yesterday evening I was in contact with Daithi’s father Mairtin, I spoke to him on a number of occasions.

“I was engaging with the Health Minister Robin Swann throughout the course of the evening as I was working through the different medical perspectives on this and came to the view that the Executive should allow this to proceed.”

He denied that there would be opposition within the DUP to the Bill.

Daithi MacGabhann with First Minister Paul Givan at Stormont Castle. PA photo 

“The party is very clear, a decision was taken last night as we were engaging on this that this now needs to progress into the Assembly, the party supports that decision.”

Ms O’Neill added: “It is a very positive story that we have been able to advance the soft opt-out organ donation, something that has been in the pipeline for some time. This legislation is powerful and Daithi is the face of the legislation, he is what it is all about.”

Ms Swann said that the legislation was not yet a “done deal”.

He said: “I think this is a good day. It won’t be an overnight fix, but it gives them that glimmer of hope. It is not a done deal, there is still work to be done, but as Health Minister I am committed to seeing it through.

“I am glad that I have now the support of the First and the deputy First Minister through urgent procedure.

“This Bill could see between 10 and 20 additional donors per year. On average we see a donor bring forward seven to nine organs so this is 180 lives could potentially be changed because of this piece of legislation.”

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