For Families and Carers : Heart Problems (Cardiac Disorders)

Heart problems are very common in people with Down’s syndrome; roughly half of babies born with the condition will have a heart defect (half do not) but less than one in five have a serious problem. Where children have a heart problem, it may be a relatively mild condition, or it may be a more serious complication that means the child will need surgery.

It is important to identify any serious problems in the first two months of life because early treatment may be needed. The UK Down’s Syndrome Medical Interest Group (DSMIG) recommend the following heart checks:

By age 6 weeks, formal heart assessment including echocardiogram

At all ages low threshold for reviewing heart status if signs or symptoms develop

From adolescence onwards as part of routine health checks listen to heart for signs of acquired heart disease.

If the checks recommended by DSMIG are carried out nearly all serious problems can be identified before a child is six weeks old.

Annual Health Check 

Anyone with Down’s syndrome (age 14 years and over) is entitled to a free annual health check with their GP.

Ideally a cardiovascular exam should take place as part of a comprehensive and thorough Annual Health Check as follows:

  • Auscultation – particularly if imminent dental procedure
  • A single ECHO should be performed in adult life
  • Adults with a pre-existing structural abnormality should be informed of current prophylactic antibiotic protocols


DSA Journal article (No. 131 spring/summer 2015) ‘Cardiac disorders in people with Down’s syndrome’ by Dr Emma Pascall, Dr Liz Marder and Professor Robert Tulloh can be downloaded here

The Down’s Heart Group is a charity offering support and information relating to heart conditions associated with Down’s syndrome

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