Children’s Heartbeat Trust

Children’s Heartbeat Trust is a local charity that provides support to children, young people and families living with Congenital Heart Disease (CHD) in Northern Ireland. 

CHD is the most common birth defect in the world, and over 200 babies are born with CHD here each year. A small number of the children we support will require heart transplants with organ donation offering their only hope of survival. We know it can be hard to talk about organ donation and children, however we need to have these difficult conversations so that in the tragic instance of a child passing away, another child might be given the gift of life.

Children’s Heartbeat Trust are proud to support over 500 heart families each year who access our support services. The impact of having a baby with a complex heart defect can be overwhelming and affects everyone in the family. To meet these needs we offer a wide range of emotional and practical supports for heart children and teens, their parents and siblings. We also fund clinical equipment, research, and advocate for the voice of heart families to be at the centre of all congenital cardiology services.

For some children a heart transplant is their only hope. It is particularly difficult to find a donor for children in need of a heart, with one of the main difficulties being that matches are largely curtailed by heart size. Consequently, young patients face a wait for urgent heart transplantation that is more than two and a half times that of an adult patient.

Alongside many other charity partners, Children’s Heartbeat Trust has campaigned in support of the introduction of a statutory opt-out system for organ donation, and to raise awareness of the children and families who desperately need a heart transplant in Northern Ireland. We have focused on the children and families behind the statistics and you can watch some of their stories here.

We would like to thank all those involved in successful transplantations, who have transformed the lives of some of our most vulnerable heart children and families. But most especially of all, we wish to thank the donors and their families who have gifted life in the most heart-breaking of personal circumstances. They too are our heart warriors.

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