EXCLUSIVE
A BRAVE three-year-old boy on the transplant register has asked Santa for a new heart, as the NHS launches an appeal for child organ donors this Christmas.
Daithi Macgabhann was born with rare hypoplastic left heart syndrome – which effectively means he has only half a heart.
About 250 UK babies are diagnosed with the condition annually, according to the British Heart Foundation.
In the first 10 days of his life Daithi, from Belfast, underwent multiple open-heart surgeries.
And at one point his parents, Mairtin and wife Seph, a trainee paediatric nurse, were asked if they wanted to turn off their only child’s life support system.
Mairtin, an Irish language teacher, said: “The surgeon said
‘For many the wait is too long’
surgery had little chance of working and we were given the option to stop treatment.
“At that point Dai opened his eyes and stared at the surgeon, even though he was on life support and heavily sedated.
“Because he opened his eyes we agreed to go ahead and help him. He is unbelievable now, he has started preschool and the operations have given him time and some quality of life.
“I said, ‘Dai, what is Santa bringing you for Christmas?’ He said: ‘A new heart’.
“He loves football and boxing and he is very active. We have to stop him when his lips go blue because he has a lack of oxygen. But he always tries his best.
“He knows he needs a new heart. But the chances are slim. There is a shortage of organs in general and when you get to children it is smaller again.”
Mairtin added: “He cannot have any more surgery to help him and he doesn’t have many years left without a donor heart.
“We were told when he came out of intensive care that we should start planning his funeral, yet three years later he’s here – though he doesn’t have a lot of years.”
Figures released today as part of the NHS campaign show that 185 children in the UK are waiting for a call offering an organ and the chance of a better life.
Adult organ donor numbers have doubled from about 800 in 2007-8 to 1,600 last year.
Better publicity about donation is credited for the rise. But child donors have remained static, with fewer than 60 each year.
The number of youngsters waiting for organs has risen in 2019. One hundred are on the list for a kidney, up from 92 in 2018, and 38 need a heart, compared with 34 last year. Of those waiting for hearts, six are babies under two, 19 are two to nine-year-olds and 13 are aged 10 to 17.
It is particularly difficult to find hearts for young children as they need to be matched for size. A young donor is their only hope.
Liz Armstrong, head of transplant development at NHS Blood and Transplant, said: “As we approach Christmas, we have 185 children waiting for a transplant.
“Our figures show that children who need an urgent heart transplant will wait on average two-and-a-half times as long as adults. For many, that wait is sadly too long. They will die before they receive the transplant they so desperately need.
“By saying yes to organ donation, families are in a position to give another family hope.
“Donor families tell us they take great pride and comfort from the knowledge that they have helped to save the life or lives of others.”
NHS Blood and Transplant figures show there are currently 6,001 adults on the transplant list.
The average waiting time on the urgent heart transplant list for adults is 30 days. However, for children it is 79 days.
Over the past 15 years, 142 children have died while waiting for a donor organ.