Dáithí’s Story

Dáithí Mac Gabhann was born in October 2016 with a condition called Hypoplastic Left Heart Syndrome, which basically means that Dáithí was born with half a working heart with the left side not forming correctly in the womb. More information on HLHS can be found here.

Normally for children with HLHS, they will have three open heart procedures. The first (Norwood) shortly after birth, the second (Glenn) after a few months of birth, and the third (Fontan) a few years after birth. Dáithí had the Norwood procedure at just 4 days old, and after initially working, Dáithí needed to be placed on a lifesaving bypass machine called ECMO for 6 days to save his life. Dáithí’s Norwood procedure would need to be reconstructed, and at just 10 days old and all the odds were against him, Dáithí managed to pull through and make it home to Clark Clinic for Christmas 2016.

Dáithí then went for the Glenn procedure in February 2017, which was much more straightforward and he was discharged from hospital for the first time in March 2017. Like many children with HLHS, Dáithí’s journey has been quite rough, although he did manage to stay hospital free for most of 2017 after being discharged.

Dáithí was readmitted on St. Stephen’s Day 2017 with the flu, and this would start his transplant journey. While recovering from the flu, the team at Evelina and RVH were worried about regurgitation in Dáithí’s tricuspid valve and how that would affect the Fontan procedure. In January 2018, the team at Evelina London felt that the regurgitation in the tricuspid valve was too severe, therefore ruling Dáithí out of the Fontan procedure. This is when Dáithí and his parents were told for the first time that, a heart transplant would be Dáithí’s only hope.

Dáithí was then sent to The Freeman in Newcastle for transplant assessment and a second opinion on the tricuspid valve. On 1 June 2018, Dáithí was placed on the routine waiting list for a heart transplant, with the Freeman team agreeing that the regurgitation of the tricuspid valve was indeed too severe for further surgery.

Dáithí has now been on the waiting list for a heart transplant for more than 2 years, and his family and community have started this Donate4Dáithí campaign to raise awareness of organ donation, while he waits. The Donate4Dáithí Campaign has also been lobbying for a change of law to soft opt-out organ donation. More information on what our campaign have done on soft opt out, can be found here.

More information on the Donate4Dáithí campaign in the media can be found on the ‘Our Campaign’ above.