Belfast Telegraph

Belfast dad pleads for new heart for toddler son

By Victoria Leonard

The father of a Belfast toddler with a life-threatening congenital heart condition has issued a poignant plea to other parents to consider putting their children on the organ donation register.

Little Daithi Mac Gabhann, who is just 20 months old, is awaiting a new heart after being born with rare Hypoplastic left heart syndrome.

The disorder led to the tot undergoing three rounds of major surgery at four days, 10 days and four months old.

Having been advised that his only child's heart is too weak to withstand another life-saving operation, Daithi's doting father Mairtin (28) has made a desperate plea to the local community for aid in finding a donor heart.

"We don't want to make people consider the death of their own child, but death can also be life-saving," Mairtin said.

"Daithi's condition is like a ticking time bomb.

"We don't know how long he has, but his condition is urgent. If he doesn't get a heart transplant we will lose our little boy."

When Daithi was born at the Royal Victoria Hospital on October 21, 2016, his mother Seph Ni Mheallain (22) was only permitted to hold him for a few seconds before he was airlifted to Evelina Children's Hospital in London.

"He underwent open heart surgery at just four days old," Mairtin said.

"The chambers on the left side of his heart were shrunken and not working, so the right hand side was doing all the work.

"When he came back they told us the surgery had gone well, but the next morning his blood saturation levels started dropping.

"They took him for exploratory surgery and he came back on a bypass machine.

"Every time they tried to wean him off it he was failing. They gave us the option to let him slip away. But then he opened his eyes, despite being on sedation, and the surgeon said Daithi really wanted to live.

"At 10 days old he underwent his second open heart surgery.

"The odds were against him, and they had to leave his chest open for 18 days as it was too swollen to close up.

"He contracted septicaemia, a stomach bug and skin infection.

"After a few weeks he started getting stronger and at 48 days old we got him back to the Royal Victoria Hospital."

Daithi returned to Evelina Hospital to have a shunt installed in February 2017, and was finally discharged that March.

However, last December his distraught parents learned he had tricuspid valve leak.

"It meant that with every pump of his heart around 20% of the blood was leaking back in, making the heart work harder," Mairtin explained. "It ruled out another heart operation. The only option now is a transplant."

Daithi is on the routine heart transplant register and is being assessed every six months, but time is of the essence.

"Normally, children get another heart operation between two and five," Mairtin added.

"We don't know how long he can keep fighting, but if he doesn't get a heart in the next couple of years, we will lose him.

"Day to day life can be stressful, but he gives us the strength to go on. He is always smiling, laughing and full of joy - he makes me proud every day that I'm his daddy."

Mairtin praised the positive reaction of the local community to his appeal to put youngsters on the organ donation register.

"People are even getting in touch saying unborn babies are donors," he revealed.

"Daithi is also a donor.

"A lot of parents don't know that they can put their kids on the organ donation register.

"Daithi could get a donated heart from a child aged two to six. It must be so hard for other parents to imagine life without their children - we didn't have that choice. The potential of that gift is unbelievable."

Mairtin would like to see a 'soft opt-out' organ donation system implemented here, whereby people are automatically considered donors, but families have the last say after death.

"We hope to save Daithi's life, and the lives of other babies," he said.

For more information, visit www.facebook.com/Donate4Daithi. To sign the organ donation register, visit www.organdonation.nhs.uk

Belfast Telegraph

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