Couple's 'shellshock' after four-year-old son waiting for new heart tests positive for Covid - and pulls through
It's 1,000 days since a Belfast child was placed on a waiting list for a new heart. In that time, Dáithí Mac Gabhann has become the face of a major campaign to change the law on organ donation. His family reflect on their son's milestone and life during a pandemic. Health correspondent Seanín Graham reports
A LATE night text message sent to the parents of a little boy who needs a life-saving heart transplant delivered news they feared most over the past year - he had tested positive for coronavirus.
More than a fortnight on, four-year-old Dáithí Mac Gabhann is chattering happily away in the back of his dad's car and demanding to know where his mum is.
For the young west Belfast couple, his rapid recovery - he had few symptoms and was only swabbed as a precaution after a close family member contracted the virus - brought enormous relief following months of anxiety as they shielded.
Breaking the news to her only child that he had Covid was one of the most difficult moments Seph Ní Mhealláin faced during the pandemic.
Both she and Daíthí's dad, Máirtín Mac Gabhann, tested negative. However, Mr Mac Gabhann then developed symptoms and was unwell for 10 days.
"The automated text came through at 10pm and Máirtín shouted up the stairs to me: 'Dáithí’s postive'. I was shellshocked," Ms Ní Mhealláin said.
"It’s been in the back of our minds for a year now. It’s a constant worry, we were always afraid of coronavirus and spent so long shielding as Dáithí was among the 'high risk' group and really susceptible to infection. Then to find out it was in our home, it was scary. We were worried we would have to ring an ambulance for him but it never came to that.
"I'm well used to sleepless nights by now but that was an extra worry, going in and checking in on him every half hour. The horrible bit was telling Dáithí he had coronavirus. He watches educational videos on his iPad and they've done songs about Covid to help kids understand it.
"He just knew it was something bad that meant you had to stay inside and wash your hands. We weren’t going to tell him but he kept asking why we had to stay inside again. So we told him we had coronavirus in our home and he started to cry. He just got very scared. I sat him on my knee and gave him a big hug and told him he was doing okay. Thankfully he pulled through and is doing fantastic."
As a result of the positive test, the west Belfast boy was removed from the transplant list for a fortnight.
"The chances of him getting that perfect heart in the two week gap is very slim, but it just adds more worry," Mr Mac Gabhann added.
"He can’t get back on the list until he tests negative. We’re in touch with his transplant centre in Newcastle and we’re hoping to get him back on in the next few days."
Dáithí's emergence from the virus is all the more significant as today marks 1,000 days since he was first placed on the list.
Given just a 10 per cent chance of survival after being born with a rare Hypoplastic left heart syndrome, his parents say the date represents a "massive milestone".
He is just one of three children in the north who needs a new heart, as all his other treatment options have been exhausted.
"We never thought we’d be here after 1,000 days," Mr Mac Gabhann said.
"I suppose we’re very grateful he’s remained stable for the most part when he's been on the list. We are also aware that time is moving on as well and it's all about time.
"But it's a big day. We’re going to have a little celebration ourselves now that he's reached this milestone. People may think that’s a bit strange but he’s still here and doing well. So we’ll probably do something special."
The bi-lingual, dinosaur loving boy - whose new "obsession" is the 1959 Disney film, Darby O'Gill and The Little People - is also the face of a high profile campaign led by his parents to change the law on organ donation in Northern Ireland, with a landmark consultation ordered by health minister Robin Swann ending last week.
Dáithí's passion for boxing has led to support from local boxers including Carl Frampton and Paddy Barnes to sign up to donation.
It is understood more than 2,000 people have contributed to the consultation document, which could pave the way for a new 'soft opt-out' system. This means all adults in the north will be considered an organ donor after their death unless they recorded a decision stating otherwise, similar to legislation in other parts of the UK.
"If this bill gets through, it will a huge feat for us, it's what we’ve campaigned for the over the last few years," Ms Ní Mhealláin added.
"The driving force for our campaign is wanting to help our son and give him the best chance for a hopeful future. But we know in the back of our heads it’s going to help so many more people than just Daithi."
With news of a breakthrough in heart transplants earlier this week, when Great Ormond Street medics became the first in the world to carry out transplants in children using organs brought back to life by a machine, the couple say their next hope is travelling to England for Dáithí's assessment.
Prior to the pandemic, they went twice a year for to the children's hospital in Newcastle but due to travel restrictions this has been postponed. The last time he was seen was November 2019.
"We had a date for January 20, we were supposed to get a private plane over. Everything was booked and it was cancelled. We understand why but that doesn’t stop it being very worrying. Cardiologists do keep an eye on him in Belfast, but Dáithí is going to get a transplant in Newcastle," Mr Mac Gabhann said.
"When we do go over there the only way I can describe it is like a full MOT, the full works. But it’s just impossible at the moment, it’s not their fault."
For Dáithí's mother, keeping him safe is her goal as lockdown eases.
She also praised his courage exactly four years on from life-saving surgery when he was just four days old - when the odds were stacked against him.
"I’m so proud of Dáithí that he's overcame everything that has stood in his way. I’m proud of him being so resilient in the face of heart disease and being able to last this long at home and not needing to to hospital for extra support. He's just a great kid who's a wee character."