Ebstein’s anomaly

The condition may be found during pregnancy, soon after birth or much later. Severe forms can cause early illness or low oxygen levels. A child with a mild form may feel well. A murmur, an extra sound during the heartbeat, may lead to tests. Tiredness, breathlessness or episodes of a fast heartbeat may lead to tests in an older child.

An echocardiogram, or echo, is an ultrasound scan of the heart. It shows the valve’s position, any leakage and how well the right heart works. An ECG records the heart’s electrical signals and checks the heartbeat pattern. Longer recordings or MRI scans may answer other questions. Ask whether the main concern is the valve, the pumping chamber, oxygen levels or the heartbeat.

There may be more than one concern.

Some children only need regular checks. Others need medicines, treatment for an unusual heartbeat or surgery. Surgery may repair or replace the valve. The team also decides what to do about any opening between the upper chambers. Severe forms may need operations that create a different route for blood. Ask which choices are possible and what each aims to improve.

The effects vary widely. The same diagnosis can describe an older child who feels well or a critically unwell newborn. Care depends on how the valve is formed, how well the right chamber pumps, the heartbeat pattern and other differences. Follow-up checks these over time. The diagnosis alone cannot tell you what treatment your child will need.

Ask how to describe any episodes of a racing heartbeat to the team and who to contact about them. Discuss activity advice and how it should be reviewed. If surgery is discussed, ask for a drawing of how blood would flow afterwards. Ask what this would mean for everyday care.