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Robin Swann speaks of own child’s heart condition while declaring organ donation bill ‘Daithi’s Law’


Daithi and Robin Swann

Daithi and Robin Swann

Daithi and Robin Swann

Health Minister Robin Swann has spoken his own child’s congenital heart condition as he moved a bill on organ donations to its final stage at the Assembly.

On Tuesday, the Assembly discussed the Organ and Tissue Bill which the Donate for Daithi campaign has been tirelessly trying to progress.

Daithi Mac Gabhann was born in October 2016 with a condition called Hypoplastic Left Heart Syndrome, meaning that Daithi was born with half a working heart, the left side not forming correctly in the womb.

In the three years since 5-year-old Daithi was placed on a transplant list for a new heart, his parents Mairtin Mac Gabhann and Seph Ni Mheallain have worked to raise awareness and bring Northern Ireland legislation into line with that in Britain.

Speaking at Stormont, Mr Swann said he would like to accommodate Daithi’s family at the final stage of the bill to recognise their resolve throughout the campaign.

The health minister is father to Freya and Evan, who was born with a congenital heart defect and has in the past had to undergo open heart surgery. 

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Sinn Fein MLA Colm Gildernew said it was important to take all steps to ensure the “crucial legislation” went on to the statute books and it would be “bitterly disappointing” for those who campaigned to see it interrupted as a result of “political considerations within this Assembly”.

Robin Swann asked that the motion be moved, it received cross-community support and the motion was approved.

Mr Swann said: “This bill illustrates precisely why it is so important for us to have a functioning and progressive assembly in Northern Ireland, one that works to improve life for all of our people.

“And it is only two years since New Decade, New Approach and once again we face political uncertainty which threatens to deny this place and the citizens of Northern Ireland of future opportunities to bring forward future positive changes.

“And it is in this context that I have great pleasure and some relief today in moving the final stage of this bill.

It has been long-awaited for those seeking organ donations and transplantations.

The Health Minister asked that the bill be commonly known as Daithi’s Law to recognise the passion and commitment of Daithi and his parents.

“As a parent of a child with a congenital heart defect I know only too well what drives them and what drove them to bring forward this legislation and the support that is necessary,” he said.

“For those people and patients who will benefit from organ transplants in the future, reaching this final stage consideration is an important moment.

“Agreement from the Assembly will permit my department to begin a full year of implementation preparations, that could include comprehensive public awareness and staff training before deemed consent would come into effect in the Spring of 2023.

“It is important that we take this time to encourage and inform people to have the conversations they need.”

Amongst the bill’s aims are increasing consent in cases where it is clinically possible for organ donation to proceed after a person’s death.

And to increase the overall number of donors and life-saving organs available for transplantation who are currently on the transplant waiting list with the goal of having the consent rate at 80% or above.

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