by Suzie Hutchinson

The diagnosis of a single ventricle heart condition, in an unborn baby, leaves families feeling frightened, isolated and confused. This was true of parents who started their half a heart journey 30 years ago and it is still true of anyone on the same half a heart journey today.

Treatments are complex and palliative, the heart can never be normal. The short and long term outcomes are unknown. Every child’s journey is likened to a rollercoaster ride, unpredictable and scary, happily more children survive now than ever.

That survival allows for life, but it also creates challenges. The heart cannot function normally which effects the amount of energy available for a child to grow, learn, develop and take part. For families this is a challenge from day one. It is an emotional journey that sets them apart from families with heart healthy children.

As the children grow up they realise that they are different, their quality of life is different, their aspirations are often smaller and their fears for their future are bigger than those of their heart healthy friends. Little Hearts Matter travels their half a heart journey with them and works with them, and their families, to strive for them to reach their full potential.

It is 30 years since the charity started its work with families. As survival improved Little Hearts Matter has grown in parallel, the needs of the children, teenagers, young adults and their families steering the development of the organisation.

There are still up to 500 babies diagnosed with just half a working heart every year, 80% of parents discover the heart defect antenatal. Expectant parents are still fearful for the survival of their children, confused by their complex diagnosis and isolated because they feel so different to their friends.

As Little Hearts Matter looks forward we know there is more work to be done, new families to support, new challenges for families already on the half a heart journey and a need for greater advocacy as we help them hurdle the challenges that their disability creates.

Watch our new film here: Every Moment Counts: Triumphs and Trials of Families Facing Single Ventricle Heart Conditions – YouTube