Our son, Bill, was born with Ebstein Anomaly. For nine years, he had been constantly followed up by his cardiologist. Recently, his cardiologist, suggested an operation and referred us to a cardiothoracic & vascular surgeon. According to the surgeon, he will correct the Trascupid Valve (TV) and patch the Atrial Septal Defect (ASD). Besides that, Bill has a loose Mitral Valve that need to be fixed as well. His heart was also swollen by a little.

Throughout the nine years, Bill did not show any symptoms of blue or exhaustion, except for complaints of tiredness once in a while when performing sports activities. We are quite brothered by whether we should send him to the surgical table. In addition, the surgeon we approached had done only 5 cases and he was considered as the most experience in our country to have performed Ebstein Anomaly operation. So far all 5 cases are still alive.

The surgeon said that this would be an elective operation. We went to another surgeon and he too suggested that an operation if not done now will be necessary in the future. However, the operation risk and complication will increase as he aged.

Because Bill doesn’t really look that sick to be operated at all. That is why we are in a dilemma. I would like to seek any advise or views on whether we should go for the operation.

We’ve taken on board some of the helpful comments made about ebsteins.org by reworking the Discussion forum.

This useful forum for sharing knowledge and experiences has proved more popular than first imagined and time has shown us which areas were particularly important to you.   The time had come to change the structure of the categories, as well as adding some new categories and removing some old ones.  We hope the new structure is clearer, easier to use, and will encourage even more dialogue.

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BCH under threat?

According to an article in The Daily Telegraph up to half of the country’s specialist heart surgery units for children face closure under controversial Government plans.  The plans follow recommendations about new safety standards, effectively having fewer hospitals but with a greater concentration of expertise.

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