Adult

Ebsteins Anomaly

What is it?
Ebsteins anomaly is an abnormality of the tricuspid valve in which the valve is abnormal and leaks and is displaced towards the point of the heart. There is often a small hole in the heart too, and many people with ebsteins anomaly also have serious or troublesome heart rhythm problems. Ebsteins anomaly varies from very mild forms of the condition to very severe forms. The treatments usually depend on how badly affected your heart is by the Ebsteins anomaly.

What symptoms may I get?
You may feel more breathless and tired than your peers when you exercise. Some patients leak a little blue blood across the hole in their heart causing them to go a little blue when they exercise. This can also increase your risk of a stroke. Many patients will have palpitations (a feeling of your heart race or bump). Some very severely affected patients develop swelling of the abdomen and legs.

What treatments are available?
Many patients require no treatment at all. Palpitations can often be treated with medicines or tablets. Sometimes we become more concerned about palpitations and will suggest that you have an electrophysiological catheter study. This is a very sophisticated ECG recording which we take from the inside of your heart. If you have had a stroke or go particularly blue we may suggest that we close the small hole in your heart with a buttonhole device. If your tricuspid valve is very severely affected, sometimes we operate to replace the abnormal heart valve.

Insurance
It can be difficult for people who have congenital heart disease to get insurance. This can cause problems with travel insurance and also when trying to buy a house or get life insurance. There are some more sympathetic insurers who can be identified and contacted through the Somerville patients association.
Tel: 0800 854759
Website: thesf.org.uk

Pregnancy
If you are thinking about having a baby you should see your cardiologist before becoming pregnant to discuss this. Your cardiologist or specialist nurse will be able to give you advice regarding the best form of contraception to use to avoid getting pregnant. The chance of having a child born with a heart problem is slightly higher than normal because you have a heart problem yourself. Your cardiologist will be happy to discuss this with you.

Endocarditis
All patients with congenital heart disease are at risk of infection in the heart (endocarditis). Such infections may be caused by infections of the teeth or gums. It is important to visit the dentist regularly, but you no longer require antibiotics prior to dental work. Due to the increased risk of infection we would also advise against body piercing and tattoos.

Adult Congenital Heart Team
Leeds General Infirmary
Reviewed January 2013