As opt-out legislation edges closer, family I know well owe it all to an organ donor
I have to declare an interest on this one because it’s so close to home. But a courageous member of my extended family has been speaking with authority as she applauded the proposals by Robin Swann and Paul Givan for opt-out organ donations.
For Aislinn Coyle-Little, who’s married to my nephew Jonathan, owes her life to a liver transplant.
And their son Jericho probably wouldn’t be here today if Aislinn hadn’t received her new liver back in 2008.
Aislinn has been backing the campaign for a change in the law here for years.
And she encouraged me in 2013 to write extensively about the call from former GAA star Joe Brolly for what was then dubbed a Good Samaritans Act that would have allowed people here to opt out of organ donation rather than opt in.
Brolly had just donated a kidney to Belfastman Shane Finnegan and he met Stormont ministers to urge them to introduce the necessary new legislation.
Aislinn supported Joe’s moves and those of former Ulster Unionist MLA Jo-Anne Dobson who had also been an active campaigner after her son underwent a kidney transplant.
Around the same time the then health minister Edwin Poots told the Assembly that 17 people had died in Northern Ireland waiting for a transplant in the previous 12 months.
“The figure shocked me,” says Aislinn. “And only last year I was told that 11 people had passed away waiting for a transplant.
“I’ve always been for a soft opt-out. The way I look at it the vast majority of people here — 93 per cent was a figure I heard — would support organ donations and would accept an organ if they needed one.
“But there’s a dreadful disconnect between that majority and the number of people — around 49 per cent — who are actually on the organ register.
“And maybe that’s because they just haven’t bothered to sign up for it because it’s not something that has actually affected them. So I think that new proposals are the perfect answer.”
Aislinn said that the plans for the soft opt-out legislation from Messrs Swann and Givan had ‘snuck up on her’ but she was overjoyed to hear about them.
“I hadn’t heard a cheep and then Robin Swann talked about his frustrations in advancing the legislation before the new First Minister Paul Givan pledged his support which was tremendous.”
Mr Swann said that the introduction of the new law could change 180 lives here every year.
Northern Ireland has been the only part of the UK without a soft opt-out system. Under the proposed legislation, everyone would be considered as willing to donate their organs unless they have formally opted out. Families, however, would continue to be consulted about donation.
Aislinn said she thought the Donate4Daithi campaign and the support of the British Heart Foundation — headed up by my old UTV colleague Fearghal McKinney — had played a major role in driving the legislation forward.
Four-year-old Daithi Mac Gabhann, from west Belfast, was born with hypoplastic left heart syndrome and needs a heart transplant to save his life.
Aislinn said she shared the admiration for the boy who she described as an “inspiration”.
Aislinn, who received her liver from a 35-year-old woman she will never know, almost died shortly after her dream wedding in America in 2008.
Her health problems had started in her teens, when she was diagnosed with a rare liver condition together with gall bladder and pancreas issues.
The gall bladder was removed, but an auto-immune disease led to complications and she’d been on the waiting list for a liver in England where she was living at the time and fell ill only hours after marrying Jonathan in a luxury resort in Florida.
Aislinn was flown back to England in a race against time with doctors fearing she mightn’t survive but a suitable liver was found for her and transplanted at the Royal Free Hospital, Hampstead.
I produced a week-long series of reports for UTV from London on the transplant and the follow-up when medics said there was no reason why Aislinn shouldn’t have a baby.
And thankfully they were right and little Jericho Little is living proof of that.
“I count myself so lucky to be alive and to have been blessed with our son,” says Aislinn, who had a particularly difficult lockdown, having to go to extraordinary lengths to shield herself.
“I was at high risk because I’d had a solid organ transplant and I was immune suppressed which basically meant that my immune system was a lot less than a normal person’s would be. In order that my body wouldn’t reject my new organ my immune system was more or less knocked down.”