A diagnosis after birth

Pregnancy screening cannot identify every heart condition. Some are noticed soon after birth, while others become apparent in childhood or later. A murmur is an extra sound heard during a heartbeat. A murmur, feeding problems or other symptoms may lead to tests. None of these alone tells the team which heart condition a child has.

The specialist combines the examination and test results to understand the heart.

Ask for the full name of the condition and a drawing showing the difference in blood flow. The team may use an echo, an ultrasound scan of the heart. They may also use an ECG, which records the heart’s electrical signals, or other tests. Some children need urgent treatment; others need planned care or monitoring.

Ask what is happening today and what can be discussed once your child is more settled. The team may have a plan even while they are waiting for some answers.

Choose a few priorities: your child’s immediate needs, the next test and the main contact. Ask the clinician to explain unfamiliar words and repeat the plan back in your own words. Keep discharge letters together for future appointments. Family support can help you find your feet. Another child’s story cannot tell you what will happen to your child.

You can ask for information in a format or language you can use, and revisit explanations with your child when they are ready.