Information on Infective Endocarditis for people with Down's Syndrome and heart conditions, repaired or not.

About Us


Make a donation using Virgin Money Giving

Search the web and raise money for Down's Heart Group

Raise money with Savoo


Text Navigation / Site Map


Infective Endocarditis in Children and Adults with Heart Problems and Down's Syndrome

What is infective endocarditis?

This is an infection where the inner lining of the heart and particularly the heart valves become inflamed. It is potentially life-threatening.

What is the cause of infective endocarditis?

Usually your blood does not contain any bacteria, but if you have an infection they can enter the bloodstream as a result of some surgical or dental procedures and even by cleaning your teeth. Ordinarily small numbers of bacteria are destroyed by the immune system, but if large numbers enter the bloodstream they can form strings which attach themselves to any rough patches in the heart which may have resulted from certain types of heart defect. Once this happens, infection develops which can spread within the heart.

What are the symptoms and how is it diagnosed?

It can be difficult to spot as the symptoms, which can come on slowly or suddenly, could relate to other conditions. They can include:

  • generally feeling unwell, tired and inactive
  • fever
  • sweating and shivering at night
If you are concerned that an unexplained illness could be endocarditis, contact your GP and request a blood test, if necessary reminding them that there is an increased risk due to the cardiac condition. Alternatively if you feel the need is more urgent you should get in touch with the Cardiac Liaison Nurses at your cardiac unit (or the nearest one if you attend elsewhere), they should be able to arrange a blood test and/or an appointment with a cardiologist. Usually a blood test and an echocardiogram is all that is needed to confirm the diagnosis of endocarditis.

Is antibiotic cover (prophylaxis) necessary?

Up until March 2008, antibiotic cover was recommended for nearly everyone with a congenital heart defect, whether or not it had been repaired, if they needed certain types of medical or dental procedures. Following an investigation by NICE (National Institute for Health and Clinical Excellence) the recommendation has been changed so that antibiotics will only be offered for those who are considered at higher risk of getting endocarditis or where the procedure is at a site where there is already suspected infection.

You can read the NICE guidelines here (NICE guideline CG64).

This change has been recommended because these types of procedure are no longer believed to be the main source of patients getting endocarditis, but there is a risk of severe allergic reaction when taking antibiotics, even if it has not happened before and this can result in anaphylactic shock. On consideration it is believed that patients generally are at more risk from taking the antibiotics than of developing endocarditis.

There are a number of patients who are considered at increased risk due to the nature of their heart defect so it is important that you obtain advice from your cardiologist for your individual situation.

Generally, for the type of defects people with Down’s Syndrome commonly have, the risk is increased for those who:

  • have had valve replacement
  • have had infective endocarditis before

Those who are not considered at increased risk are those who:

  • have an arrhythmia

We’ve always had antibiotics in the past, what should we do?

If you have concerns about these changes and how they will affect your child, talk to your cardiologist about them. Many are prepared to carry on recommending antibiotics if parents are particularly concerned, but if they would not routinely recommend them for your child now, you will need to weigh up the risks of the two options.

So what can we do to help prevent endocarditis?

Taking care of teeth and gums helps prevent tooth decay and gum disease which can allow bacteria into the bloodstream, so good oral hygiene is important. (see Dental Care for Children and Adults with Heart Problems and Down's Syndrome Topic Note).

Body piercing and tattoos carry a high risk of infection. Always check beforehand with your cardiologist to see if antibiotic cover is required and make sure you go to a reputable practitioner with excellent hygiene standards.



A list of reference sources used for this publication can be viewed on our website at or you may call to request details in print.


We were pleased to partner with Passion Digital in 2015. They will be supporting our digital marketing efforts and managing our Google Grants account. Google Grants is an in-kind scheme from Google that gives charities £6,000 of free advertising per month on the Google Adwords platform.


Special car insurance scheme for disabled drivers or passengers

    UK Charity No. 1011413

       privacy policy     terms & conditions     website     copyright     disclaimer
please contact us  


© Down's Heart Group 1998-2019

UK Charity No 1011413    email:

This information may be reprinted, copied and distributed freely provided that the content is unaltered and the copyright and conditions are also included.
For any other use, permission must be obtained from Down's Heart Group.