Support for your family
Find someone to talk to, connect with other families or get help with the practical side of caring for your child.
Worried about your child’s health?
Use your child’s care and contact plan. Your cardiac team is the best place for questions about their care.
Talk to someone
A first step
If you need to talk about how you’re coping, ask your child’s cardiac team what support is available for parents and carers.
British Heart Foundation
UK-wide
UK heart information, congenital-heart resources and support from heart specialist nurses. Includes information for families and adults.
Contact the Heart Helpline (opens in a new tab)
Meet other families
A first step
An online group can be a useful first step. Ask your cardiac team about parent groups linked to your hospital, too.
Tiny Tickers
UK-wide; online family support
Family information, pregnancy resources and online groups where parents and carers of children with heart conditions can share experiences. Check current sessions directly.
Find online parent groups (opens in a new tab)
Get practical help
A first step
Tell your ward or cardiac team what’s making care difficult. Ask who can advise on travel, accommodation or support at home.
Children’s Heart Federation
UK-wide; office in Braintree, Essex
Information about caring for children with heart conditions and where to find practical support. Check which services you can use directly.
Find practical support (opens in a new tab)
Find specialist or local support
A first step
Ask your cardiac team which services cover your hospital and area. The charities below have specific eligibility.
Little Hearts Matter
UK national charity
Information and support for families affected by heart conditions with one main working pump, called a single ventricle. Some advice only applies to these conditions.
Find single ventricle support (opens in a new tab)ECHO
Supported hospital networks; members across the UK
Practical, family, youth and sibling support for families treated by Evelina London, Royal Brompton, Harefield and their hospital networks. Check whether your family can use the service.
Check hospital network support (opens in a new tab)
Information to read or share
These resources explain heart conditions, procedures and feeding. Check with your own team about what applies to your child.
NHS: congenital heart disease
England information; NHS services and pathways vary across the UK
Public information about diagnosis, treatment and when to seek urgent medical help. Your own heart team remains the contact for an individual plan.
Read the NHS overview (opens in a new tab)Great Ormond Street Hospital
London, England; public information available online
NHS children’s-hospital information about heart tests, procedures, medicines and family care. Local ward arrangements describe GOSH and may differ elsewhere.
Read about cardiac catheterisation (opens in a new tab)University Hospital Southampton
Southampton, England; online PDF
A parent-informed booklet about feeding, growth, tube feeds and bonding for infants with congenital heart disease. Apply it with your own feeding team.
Open the infant feeding booklet (PDF) (opens in a new tab)Cincinnati Children’s: Heartpedia
Cincinnati, Ohio, USA; online app information
Interactive 3D models of some heart conditions present from birth and their operations. This US resource simplifies the heart’s structure. Your UK heart team decides your child’s treatment plan.
Explore the Heartpedia app (opens in a new tab)