Little Hearts Matter
Little Hearts Matter is the national voice of families where a child has been diagnosed with a single ventricle heart condition. Up to 600 children are diagnosed as having only half a functioning heart each year. Without major surgery many of these children would die within days or even hours of birth. Those that survive face many restrictions in their day-to-day lives and some of them will eventually need transplantation. Little Hearts Matter offers support and information to children and families affected by this life changing diagnosis. This begins at diagnosis, continues throughout treatment and life at home, and in some cases through to end of life care.
Showcase
Over the last 20 years the medical care available to children diagnosed with single ventricle heart disease has improved immeasurably. Children who used to die at birth are now offered treatments that will enable many of them to reach adulthood, although much of their life will never be normal.
This survival has created many new challenges. The following areas of care are priorities:
Better and nationally available antenatal diagnosis, allowing for parental choice.
Improved surgical and medical care performed in hospitals that specialise in treating single ventricle heart disease.
Joined up hospital and community health care which enables families to live at home with confidence.
Holistic care of the child in the community that allows for developmental, educational and psychological support to be easily available.
Knowledgeable and supportive education that allows each child to fulfil their potential.
Supportive and accurate transition of care from childhood to adulthood.
Supportive end of life care within either the hospital or community setting.
The Little Hearts Matter team works to promote all of the above priorities by listening to the voice of its membership.
Priorities
“We work to alleviate the distress created when a child is diagnosed as having only half a heart”
Little Hearts Matter:
- Offer support to anyone affected by single ventricle heart disease from diagnosis onwards.
- Link families through a network of parent to parent support - both on the telephone and at national and regional events.
- Create up to date, accurate information on diagnosis, treatment and lifestyle issues that has been written specifically for children and parents, with the aim of complimenting the verbal information given by health professionals.
- Work with health professionals, education and social care teams to improve the service provision available to people affected by these heart disorders.
- Raise awareness of the needs of children and families affected by complex congenital heart disease.