Northern Ireland

Dáithí's campaigning family hails 'emotional day’ over soft opt-out organ donation legislation

 Dáithí MacGabhann and First Minister Paul Given. Picture by Hugh Russell
 Dáithí MacGabhann and First Minister Paul Given. Picture by Hugh Russell  Dáithí MacGabhann and First Minister Paul Given. Picture by Hugh Russell

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.

It was announced the legislation had been given approval to proceed by the Executive yesterday by way of urgent procedure to the 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.

Máirtín MacGabhann, whose four-year-old son Dáithí 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.

Dáithí and his parents met Mr Swann, First Minister Paul Givan and Deputy First Minister Michelle O’Neill at Stormont today.

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 Dáithí that his wee smile has united all those on the hill.”

Read more:Schoolchildren become organ donors after being bowled over by 'high-fiving' toddler who needs new heart

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

“Dáithí 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 yesterday’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 Dáithí’s father Máirtín, 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.

&nbsp;D&aacute;ith&iacute; MacGabhann and his parents&nbsp;M&aacute;irt&iacute;n and Seph<br />visited Stormont today. Picture by Hugh Russell
 Dáithí MacGabhann and his parents Máirtín and Seph
visited Stormont today. Picture by Hugh Russell
 Dáithí MacGabhann and his parents Máirtín and Seph
visited Stormont today. Picture by Hugh Russell

“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 Dáithí 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.”

  • To sign the organ donation register, visit www.organdonation.nhs.uk

Read more:Schoolchildren become organ donors after being bowled over by 'high-fiving' toddler who needs new heart

D&aacute;ithi MacGabhann at the new organ donation mural on the Whiterock Road in west Belfast in 2018. Picture by Mal McCann
Dáithi MacGabhann at the new organ donation mural on the Whiterock Road in west Belfast in 2018. Picture by Mal McCann Dáithi MacGabhann at the new organ donation mural on the Whiterock Road in west Belfast in 2018. Picture by Mal McCann