A Belfast man whose two-year-old son is in need of a life-saving heart transplant has visited Derry to promote organ donation.
Dáithí Mac Gabhann was born with Hypoplastic Left Heart Syndrome in October 2016 and is in urgent need of a heart transplant.
His father Máirtín has been involved in the campaign Donate4Dáithí and he personally spray painted an organ donation message on Free Derry Wall this week, encouraging people to donate their organs.
Almost 48% of the adult population in the local Western Trust council areas are registered potential donors.
However, there is a real shortage of organ donations with approximately 140 people in Northern Ireland and approximately 6,000 people in the United Kingdom waiting on life-saving transplants. Unfortunately, every year around 14 people in Northern Ireland die waiting for an organ transplant.
Máirtín said the family's Donate4Dáithí campaign started last year after finding out their son Dáithí was in need of a new heart.
He explained: "We found out about Dáithí's condition at Seph's 20 week anomaly scan. Dáithí was born on the 21 October 2016 and has his first open heart surgery at 4 days old.
"Although the surgery was a success at first, Dáithí's condition worsened over night. Dáithí was failing and was taken back for more surgery and was placed on a lifesaving machine called ECMO."
They were told that he had a 10% chance of survival at the time and that he could stay on ECMO for around 5 days. "After 6 days there was still no improvement and the team in Evelina London gave us the option to stop treatment. Right after this question, Dáithí opened his eyes for the first time post operation and the surgeon said the words 'your boy wants to live'."
Dáithí then had two open heart surgeries in 10 days and came off ECMO, however, during the next 46 days in ICU in London he would have a stroke, sepsis, NEC all which could have been fatal.
Máirtín said: "It was a miracle that Dáithí pulled through but he returned to Belfast just before Christmas 2016 where his treatment continued. After more open heart surgery in the months that followed, Dáithí now needs a heart transplant to save his life."
Dáithí is on the routine list for transplant and there are just over 40 children in the UK and Ireland that are waiting on a heart transplant.
Children wait a lot longer for a heart transplant than adults. The family has been told that Dáithí's chances of receiving the gift of a new heart while on the routine list are "slim to none" because there just aren't enough organs.
It means Dáithí's condition will have to worsen before he is placed on the urgent list for transplant. "This is a hard pill to swallow because the best time to have a transplant is when a person is stable. This is why we are campaigning, we want more people to be aware of organ donation," Máirtín added.
They started campaigning just over a year ago, a month after finding out that Dáithí was listed for transplant.
The British Heart Foundation have made Dáithí, myself and Seph ambassadors of the organisation as we call for the introduction of a soft-opt out approach here in the North.
They support the introduction of a soft-opt out approach, and worked in putting a motion forward to Belfast City Council supporting the introduction of a soft-opt out legislation in the North.
Gift of life
Dr Declan Grace, Lead Clinician for Organ Donation at the Western Trust said: “Organ donation really is the gift of life and the Western Trust is encouraging everyone to join the Organ Donor register and tell their loved ones that they wish to be a donor so that they are aware of their wishes.
“Deciding to become an organ donor is entirely your decision but it does affect your family. After your death, your next of kin will be consulted. When families or friends know your wishes it makes the situation less stressful for them and the decision to donate less difficult and can give them the confidence to fulfil your wish to be an organ donor.
“The more people pledge to donate their organs and tissues after their death, the more people stand to benefit. In 2018/19 there were eight organ donors in the Western Trust area, resulting in 20 patients receiving a life-saving or life-changing transplant.
Dr Grace continued: “The Western Trust continues to promote organ donation in partnership with local councils, colleges and universities. While the number of people who have registered as potential donors is very encouraging, there is still a lot of work to do to ensure as many people as possible join the Organ Donor Register and tell their loved ones about their wishes.
“We can save many lives and together we shall do so.”

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