Your child in intensive care

Cardiac intensive care provides very close checks and specialist support for children with heart illness or after heart surgery. Doctors, nurses and other professionals work together; your child may have several teams involved. Ask which doctor is responsible for bringing the care plan together that day. Tubes, lines and monitors can be unsettling to see.

Ask the bedside nurse what each is doing and which changes are expected.

Your knowledge of your child matters. Tell staff about usual behaviour, communication, comfort and routines. Ask what touch, talking, holding or everyday care is possible today; this may change with their condition. If your baby cannot be held or fed in the usual way, ask about other ways of being close and about expressing milk if you wish.

Try to agree a regular update and a place to note questions. Ask staff to explain what they are working towards next and what would change the plan. Staff need to check what each alarm means. Hearing an alarm alone does not tell you what is happening to your child. Check visiting, accommodation and phone arrangements locally.

Ask about staff who support families, psychologists, social workers and play specialists. A chaplain can offer spiritual or religious support if you want it. Taking a break can be difficult, so ask who will call you and how to check in while away from the bedside. You can need support even when your child’s medical progress is encouraging.