One in every 133 babies in the UK is born with a heart condition, over 5,000 babies each year. On top of this, an estimated 750 children develop heart conditions after they are born. Improvements in paediatric heart surgery and clinical care have led to more children with heart conditions surviving into adulthood.
While mortality rates are improving, the quality of life for heart children remains variable. Congenital heart disease is for life – people living with the condition may need lifelong care, support with healthcare, education, social care, employment and financial wellbeing.
CHF works to:
Educate and inform all about congenital heart disease.
Advocate for timely diagnosis and better treatment
Campaign for better care and increased research.
In practical terms CHF provides information sheets relating to heart conditions and caring for heart children and runs an information phone line. CHF provides INR machines where needed for children on Warfarin. CHF helps children prepare and understand their surgery and treatment by providing scarred Molly’s Dollies, personalised to match a child’s own scarring. For very young children the book Rosie goes red, Violet goes blue helps them understand heart conditions.