A guide for parents
Emotional wellbeing for your family
01
There is no single way to feel
A heart diagnosis can bring worry, grief, anger or numbness. Feelings can change during treatment and at important moments later in life. A period of good medical progress does not mean emotional support is unnecessary. Ask the care team what emotional or family support is available. Support should include the child’s experience as well as that of parents and carers.
02
What happens next
Finding useful support
Tiny Tickers offers online groups where parents and carers can share experiences with support from a group leader. These include groups during pregnancy and after the death of a baby or child. Little Hearts Matter supports families where a child has one main working heart pump, called a single ventricle. Sharing experiences can reduce isolation, but another family’s medical course is not a prediction.
Choose how much you want to share and step back from groups or stories that increase your distress.
Ask for help in ordinary words
You can tell a professional, “I keep replaying what happened”, “I cannot sleep” or “my child is frightened of appointments”. You do not need a diagnosis or perfect explanation before requesting help. Discuss the practical pressures too: exhaustion, work, travel and caring for others may be part of the difficulty.
Ask children what helps them feel safe and let them choose how to communicate, such as talking, drawing or play. If difficult feelings continue or make daily life hard, ask your GP or care team about support. If you or someone else is in immediate danger, get emergency help.
03
Questions to ask
Save the questions you want to take to your next appointment. You can edit them in your Journal.
- What emotional support can the team offer our child and family, and how do we ask for it?
- Would peer support be helpful for us at this stage, and can you suggest a suitable way to connect with other families?
- Who can help our child understand and talk about hospital experiences in a way that suits their age?
Sources and review
Sources checked 9 October 2026. Independent clinical review pending.
- British Heart Foundation: Congenital heart disease
Accessed 9 October 2026
- Great Ormond Street Hospital: Flamingo Ward
Accessed 9 October 2026
- Tiny Tickers: Virtual peer support groups and sessions
Accessed 9 October 2026
- Little Hearts Matter: Little Hearts Matter
Accessed 9 October 2026