16-05-2025
Wicklow mum saved by transplant says new organ donation law ‘doesn't force it on people'
Leeann Clarkson, from Kilcoole, also spoke about how she would feel having a conversation about organ donation with her daughter, who is now 11, and why her son has already got an organ donor card.
Leeann was diagnosed with Nephrotic Syndrome when she was 19, which doctors believe was caused by a throat infection, despite having had her tonsils removed when she was 13.
At the time, she was going through a high-risk pregnancy with her first child, having developed pre-eclampsia. Her son, Nathan, was delivered at 30 weeks by emergency C-section, weighing just 2lbs 13oz.
After giving birth to her son, Leeann became very sick and had to be put on dialysis. Rather than facing daily trips to the hospital, the single mum chose to do peritoneal dialysis at home.
The dialysis was a nightly occurrence, an eight-hour ordeal that left her exhausted and ill. The good news arrived later that year, when a phone call came in (at 1.25am – the time has been stamped on her memory) that a kidney donor had been found.
She counted herself lucky. She was only six weeks on dialysis, and she was told at the start she could be waiting two to four years.
The transformation was 'a new lease of life', and she only realised how sick she was after she had been given the gift of a new kidney. She soon met a new partner and in 2013 gave birth to her daughter, Abbie.
She describes the moment she was told a donor had been found as 'bittersweet' – as she knows that 'someone had lost their life in order for me to receive this kidney'.
So when asked whether she supports the new law, she admits that while she does, 'it's because I have a donor kidney'.
According to the Irish Kidney Association, there are over 600 people currently on transplant waiting lists for organs, including the heart, lung, liver, kidney, and pancreas, and over 500 of these are waiting for a kidney transplant.
Last year, 263 organ transplants were carried out thanks to the generosity of 84 deceased donors and 30 living kidney donors. This included 175 kidney transplants, 53 liver transplants, 16 heart transplants, 15 lung transplants, and four pancreas transplants. The association believes the need for a national conversation about organ donation has never been more urgent.
Leeann understand the concerns people have and it's not a topic that families, people with young children and people in loving relationships, want to readily discuss.
'Some people want to donate and then their families don't want to, so I think that's what they're trying to aim at. It's not a discussion everyone wants to take up with their family either. I have an 11-year-old daughter. It's not a discussion I'd like to be having. You just don't want it to ever happen. But then there are kids that need donors as well, so you kind of have to look at it in that way. Smaller babies need smaller organs.'
Her son, Nathan, who is now 25, has a donor card, but her daughter 'is not something I'd like to think of'.
'But I probably would donate her organs. I'd be selective, I suppose . . . the eyes, I don't know. I've never broached it with Abby. Nathan was 18. But he grew up with me, he was nine when I had the transplant. So he's seen the actual impact of me having a transplant, the benefit of it, so he'd be all for it.'
Leeann would urge every adult to look carefully at the new law change as there has been some confusion over exactly what it means.
'It's not being forced on people. It's just like if you leave it on the long finger and you didn't get it done then there's kind of that confusion.'
She believes there needs to be a much better awareness campaign, as people have genuine fears and concerns that have not been adequately addressed.
Colin White, the national advocacy and projects manager for the Irish Kidney Association, said the changes that will come into force on June 17, are 'very nuanced' and the legislation ensures that family members will always be consulted before any action is taken.
"If you go into the terminology, it's what's called a soft opt-out with family consent,' he said. But he agrees that 'in the absence of clarity, chaos reigns'.
'The messaging we're trying to put around it is, it's a step forward, there's a lot more in the legislation than just the consent element. It's the first piece of domestic legislation on organ donation and transplantation in the history of the state. Prior to this, practices were essentially being rooted in the 1832 Human Anatomy Act, so it is a positive step forward, but it's a little misleading, unfortunately, how some of the messaging has been put out about it, and that the headlines are going with, unless you opt out, consent will be presumed.'
Mr White concedes it is a 'highly emotive subject' and that some of the fears being stoked continue the narrative 'the government are out to get you, so now they're coming out after your organs'.
'Organ donation and transplantation relies on public trust,' he said. 'The reality of what's going to happen on the ground is the family role remains central. What's actually going to happen at the coal face is if somebody has not opted out, the next step is to approach the family – and it is literally in black and white in the legislation.
"And I'm disappointed in the Department of Health, we've been pointing it out since they were drafting the legislation, the importance of getting that messaging right, like they have it in the legislation, for me there's two paragraphs to pull out, that's explaining deemed consent, and then explaining that the medical practitioners cannot go ahead with retrieval if the family object, and they have to ask the family.
"Any healthcare practitioner must assure themselves very clearly that the designated family member has no objection to organ donation going ahead, and in the absence of that assurance, they cannot proceed,' he explained.
The advice is to 'empower your family to ensure that your wishes are respected,' Mr White added.
"So have that family conversation, so that in the event that if you have chosen not to opt out, and your family is approached, because they know your wishes, they're much more likely to give consent.'
Regarding the issue of young children, he recounts a school project he was involved in, where the students wanted to do a young social innovators project on promoting organ donation and promoting the conversation around it.
"The girls' view of it was, our parents are never going to talk to us about this, because the thoughts of talking about the death of your children, with your children, is just too much to consider, so their view was, well, if we can get it into education, then we're bringing the conversation home. 'Today in school we learnt about organ donation and how we can transform the lives of others.'
"We've focused on putting the lived experience out there, the individual stories, so trying to get behind the statistics, behind the jargon, and say, look, it's about Mary, it's about John. It's somebody who could be your family member, it could be your neighbour, it could be your work colleague. It's very real, and the gift of life is very transformative.'
