‘Daithi makes everyone smile and a heart transplant is his last chance’
The father of a four-year-old awaiting a vital organ donation explains why Northern Ireland must embrace the opt-out system established elsewhere in the UK
Four-year-old Daithi MacGabhann from west Belfast looks like a happy, normal boy, who loves “wrestling, football and boxing” and has a winning smile ready for all who meet him. Yet the inspirational tot is living with a serious condition known as hypoplastic left heart syndrome, meaning only half of this vital organ is functional. His parents Mairtin and Seph were told their baby son was suffering with the life-threatening condition at his 12-week scan and were naturally devastated by the news. “We did not know what we were in for,” says Mairtin. “When he was born Daithi and Seph had about five seconds of skin-to-skin contact before he was whisked away from us. “He had his first open heart surgery at just four days old at a hospital in London, his second at 10 days old and a third operation at two months. He was given a ten per cent chance of survival and almost died on many occasions. But Daithi is such a fighter and he pulled through.” After admission to the RVH in Belfast on Boxing Day 2017 while suffering from flu, Mairtin and Seph were told their son would need a heart transplant after the discovery of a leak in one of his tricuspid valve. He’ll have been on the heart transplant waiting list for three years in June. In the meantime his mobility is compromised and he relies on medication to keep him alive. His dedicated parents launched campaign Donate4Daithi in June 2018 as a way of raising the profile not only of Daithi’s case, but the broader issue of how Northern Ireland remains the only part of the UK which does not have presumed consent for organ donation in place, meaning that those who wish to become organ donors have to sign the register. In England, Scotland and Wales, what is known as the ‘soft opt out’ system is in place, whereby everyone is considered a viable donor unless they make the decision and sign up to opt-out of organ donation; this policy makes it easier for organ donation to happen and Mairtin and Seph, like many of those with loved ones waiting on an organ transplant to save their lives, are dedicated to seeing a change in legislation here that will make a soft opt-out system the status quo. In 2016, the UUP brought forward a private members bill on the issue which failed to gain Executive consent, meaning the battle to change organ donation laws here is still ongoing. For Mairtin, who falls “more and more in love” with his desperately ill young son every day, waiting on the call to hear that a heart has become available for Daithi is agonising. “We were told he would possibly have to wait three years for the gift of a new heart. We’re at that stage now and we’re still waiting on that call. There’s no sign of anything and a big reason for this is the Covid pandemic which has stalled everything, including transplant operations. “We’re grateful he has remained stable throughout all this but when we saw the consultant at hospital in Newcastle in England at the weekend we were told there is very little activity in terms of organ transplants because of Covid and that puts us and others with loved ones in need of a donor in a very difficult position.” There are only around 25-30 paediatric transplants in the UK each year, largely due to the shortage of viable donor organs. Daithi will be five in October, and says Mairtin, “brings happiness to everyone who meets him”. But the family have to live with the uncertainty of knowing if and when a suitable heart donor will become available and when such a surgery can be performed given the manifold challenges facing the health service due to the pandemic. “It’s been a roller coaster full of ups and downs. Daithi has been unbelievably strong. It’s inspiring. He just gets on with life despite only having half a functioning heart, and you look at him and go, well, if this wee man can keep going then so can I. “He’s been in our lives four years now and we continue to fall in love with him more as each day passes. “The thought of losing him is just unthinkable.”
Since launching their campaign, Mairtin and Seph have been garnering the support of political leaders and have worked hard to highlight the necessity of the implementation of a soft opt-out donor system. As part of the campaign, Daithi even entered the ring with Paddy Barnes at the Ulster Hall last February, making his boxing debut in a one-off event that was broadcast by the BBC, showing the world what a little trouper he is, and raising awareness of the vital issue of organ donation as offering many the precious gift of life. A new heart is Daithi’s last chance.
“It’s such a hard situation,” continues Mairtin. “We are hoping the wee heart Daithi has now will last as long as possible until a transplant becomes available, but it’s a waiting game. We hope and pray it all works out. “We’re waiting on that call but sadly we don’t think it will be anytime soon due to the pandemic.” Mairtin continues: “Because of our campaign organ donors in Northern Ireland have gone up from 42 to 49 per cent and we are aiming to get it up to 50 and ensure that organ donors are not a minority demographic. “But of course we want to see the Assembly pass legislation that will bring Northern Ireland in line with the rest of the UK where the opt-out system is already enshrined in law, making more organ donations available and more quickly. We have travelled up and down the country, having late nights, meeting politicians of all persuasions, doing non-stop lobbying. “The big challenge for us has been Covid, which has halted transplant surgeries because of the enormous pressure on the NHS. When we come out of this what we will see are bigger waiting lists for organ transplants. We live each day waiting for a call to say they’ve found a heart suitable for Daithi. That is our hope, our goal, our dream.” A public consultation to seek the public’s views on how to introduce a soft opt-out organ donation system closed in February this year and the Department of Health is currently analysing the responses before bringing legislation forward to the Northern Ireland Assembly. Head of British Heart Foundation Northern Ireland Fearghal McKinney said we must maintain the pace here to make legislative change: “The Health Minister Robin Swann has been a great supporter for the change in law here and we look forward to him bringing legislation to the Assembly as quickly as possible, informed by the consultation responses. We must not lose momentum on making this change as it is too important. We have a great opportunity here to change the lives of those who are on the transplant waiting list. We have seen the difference the change has made in Wales since 2015, where family consent increased by nearly 50 per cent in the first two years after the change to an opt-out system. We can’t delay any longer in starting Northern Ireland on that journey.”
As of March 31, 2021 there were 115 people waiting for an organ transplant in Northern Ireland, 16 of them waiting on a new heart. Under a new soft opt-out system in Northern Ireland, the family would continue to be consulted about donation as well as considerations around faith and beliefs. McKinney urged political leaders to do all they can to change the law here: “We know the pandemic has brought challenges but we must get this important piece of legislation over the line in this Assembly mandate. “One person’s decision to donate their organs is a gift that can save and improve the lives of up to nine other people.”
McKinney added: “We believe a change in the legislation will lead to more people receiving the gift of a donated organ.”