When to get help

For parents and carers of children with congenital heart disease.

Call 999 in an emergency

The NHS advises calling 999 if your child:

suddenly turns blue or grey around the lips, tongue or face, or on their skin
struggles to breathe or has chest pain
seems confused, unusually sleepy or dizzy
has a very fast or irregular heartbeat
becomes floppy or responds differently from usual

On brown or black skin, colour changes may be easier to see on the palms, soles, lips, gums or inside the eyelids. Follow the emergency call handler’s instructions.

For other concerns

Follow the individual care and contact plan from your child’s team, including any instructions about symptoms, their usual oxygen levels and who to call out of hours. If you’re unsure what your child’s plan says, ask their team to go through it with you.

If you think your child may have symptoms of congenital heart disease and none of the emergency signs above apply, the NHS advises getting an urgent GP appointment or calling NHS 111. Call 111 for advice about a child under 5. Contact arrangements may vary across the UK.

NHS: congenital heart disease and when to get medical help

NHS guidance checked 13 November 2026. Independent clinical review pending.