Living with Ebsteins

For many children Ebstein’s is a condition that can be almost invisible in early life, but as the heart grows then the leak in the valve presents more challenges for the body to cope with,  which may then lead to the presentation of some of the symptoms mentioned earlier. For some younger babies or children these symptoms may already be present at birth. For all Ebstein’s cases there is an underlying uncertainty about how (and when) the condition will develop, and it is this which makes definite predictions difficult. As the condition is very rare then it is unlikely that you will come into contact with someone with Ebstein’s (other than in a specialised heart clinic).

One important aspect of living with Ebstein’s could therefore be helped by joining a support group, in this way you can share the emotional and physical problems and stresses with other people who can understand what it feels like to be a parent or person with this rare condition. We hope that membership of our support forum will be one way of uniting people and drawing on their experiences and knowledge, as well as being a source of information about new research etc. For those parents whose children  have been newly diagnosed, contact with others who were in the same situation and are now ‘further down the road’ will provide invaluable support and encouragement.

Another recommendation is regular monitoring and check ups with your doctor/consultant. The more active you are in managing and understanding your (or your child’s) condition then the better equipped you will be to take any decisions on further treatments that may have to be made. Often it is the parent who provides the first clues to a deterioration in a condition, and the earlier this is noticed then the more effective the treatment can be.  However, your doctor will balance this against the major trauma of open-heart surgery.

If you have been prescribed medication then it is vital that you take the medication regularly to alleviate or prevent symptoms such as fast heartbeats and shortness of breath. Medication should be taken on time and in the right dosages.

most patients enjoy an excellent quality of life

Finally, the best advice is to be active as far as your doctor recommends as taking exercise strenghtens the heart and improves the circulation of blood in the body. You (or your child) need to live as normal a life as possible, and many people with Ebstein’s do just this. Emotionally, the uncertainty of the prognosis can be difficult to deal with, and the severity of the disease will certainly differ significantly between individuals. However, recent research concludes that “most patients enjoy an excellent quality of life” (Boston et al, 2006:690).

We would particularly like to acknowledge the usefulness of the websites of the Mayo Clinic and the Children’s Hospital Boston in helping us to inform and structure some of the information on this website.

Links to other websites about Ebstein’s Anomaly can be found in our links section.

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