Organ donation regulations changed in NI with the enforcement of the Daithi Act

Since Dicey's Law came into force, most adults in Northern Ireland are considered potential organ donors.

The bill is named after 6-year-old Daiti Mak Govern, who needs a heart transplant.

The law was passed in February with support from the UK government after being delayed due to political deadlock at Stormont.

Northern Ireland was the only region in the UK without an opt-out organ donation system.

The purpose of the Organ and Tissue Donation (Deemed Consent) Act, known as the Dicey Act, is to increase the number of organs available to people in need of transplants.

The new law changes the way consent is given.

Currently, adults in Northern Ireland are deemed to have consented as potential organ donors after death, unless they choose to opt-out or belong to an excluded group.

Excluded from the deemed consent law are:

Department of Health Permanent Secretary Peter May said that although the law around organ donation had changed, everyone still had the right to choose.

“The legal reform process has already increased awareness, discussion and support for organ donation,” he said.

“I am aware that the majority of people here say they support organ donation in principle, but many still do not sign the NHS Organ Donor Register or tell their families. We haven't even been able to do that,” May said.

“We hope that switching to an opt-out system will make it easier for families to help donate.”

Mr Daiti's father, Martin Mac Gavan, said it was “absolutely incredible” that the law had finally come into force.

“The word critical is being thrown around a lot, but we are very proud that this law is named after our cause: a law that will save lives,” he said.

“We hope that in the coming months and years, it will help save lives, and perhaps the lives of our daiti as well.

“Our approach to this law is also a stepping stone to normalizing organ donation in society.

“So while this is only aimed at adults, we hope that Dáithí and other children will benefit as well.”

Dr Dominic Traynor, Northern Ireland's clinical lead for organ donation, said: 'Organ donation is only considered in the unfortunate circumstances of a person dying in hospital.

“These numbers are so small that organ donation continues to be a precious gift.”

Last year, 96 patients in Northern Ireland received life-saving transplants from deceased donors, with 59 donors in Northern Ireland and 140 life-saving transplants available across the UK.

Between 10 and 15 patients die each year in Northern Ireland while waiting for a transplant.

Daithi Mac Gavan has been on the waiting list for a heart transplant since June 1, 2018.

During that time, his family has been actively campaigning for soft opt-out laws and increased organ donation.

Organ donation means people like Sean Brown, who suffered kidney failure at the age of eight, get a second chance at life.

He received a kidney transplant in December 1989, and although his body initially rejected it, it is still going strong some 34 years later.

“I'm so glad I just got the kidney. I didn't have any real quality of life at the time,” he said.

“My kidneys just started to fail and we don't really understand why.”

Receiving a kidney transplant allows Sean to live a normal life.

He said he was very grateful to the man who donated his kidney after he died and believes Daiti's Law is important.

“There are people in the world who need organs. This is my hope to increase the supply of organs so that people can have the gift of life, just like I did.” “It’s a method,” he said.

Behind every organ donation is the person who donates the organ after death.

Claire McFall, from Larne, County Antrim, was 32 when she collapsed and died at home after a Zumba workout.

She had an undetected cerebral arteriovenous malformation.

Her sister Ciara Hunter said Claire's family was asked at the hospital if they wanted to donate her organs.

Claire wasn't on the donor register, which surprised Ciara.

“We were lucky to have Claire like that,” Ciara said.

“She would literally give you the shirt off her back.”

Ciara said it was easy for the family to agree to organ donation once the reality of Claire's disappearance was settled.

Although the whole eye will not be transplanted, only the cornea will be used, Ciara said she found the decision about donating Claire's heart and eyes difficult.

“What I know can give people new life, but there's also a sentimental part to it,” she says.

“If someone says to you, 'You have your mother's eyes,' it's very, very difficult to think about anyone else having those eyes.”

Ciara said it helped to know that there were people “still out there kicking and standing up and living their lives.” Because Claire was that kind of person.

Ciara said Daiti's Law is amazing and will “make a difference to so many lives.”

She believed her sister's story helped her talk about organ donation.

“I think she would be really, really happy to know that her tragedy and what happened to her was talked about in so many homes and made a difference to so many people,” she said.