ebsteins.org helps train heart surgeon in new Ebsteins technique

Learning the Cone Technique

Ebsteins.org has part funded leading Ebstein’s Anomaly heart surgeon Massimo Caputo to go to Brazil and spend 5 days with Dr Da Silva, the eminent cardiologist who pioneered the ‘cone surgery’ techniques (see here for Illustrations of Da Silvas cone technique).  During the 5 days Massimo watched 5 different Ebstein’s operations, all very different and he looks forward to putting these into practice in the UK.

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It is one year since the launch of our website, and time to recap on what we have achieved – and what we would like to achieve in the future.  Here is what we have done:

ebsteins.org helps train heart surgeon in new ebsteins technique

Massimo with Dr da Silva and Dr Luciana Da Fonseca and their son

In June 2009 we held a fundraising barn dance and charity auction in Bradford-on-Avon, Wiltshire and raised a total of £2, 100.  With this money we part funded Massimo Caputo (heart surgeon at the Bristol Children’s Hospital) to go to Brazil and spend 5 days with Dr Da Silva, the eminent cardiologist who pioneered the ‘cone surgery’ techniques.  During the 5 days Massimo watched 5 different Ebstein’s operations, all very different and he looks forward to putting these into practice in the UK.  At present, to our knowledge no other UK hospital currently offers the cone technique as a method of repair, although the short term and mid terms results of this have been very successful, see this research paper or have a look at the Illustrations of Da Silvas cone technique.

Jose Pedro da Silva

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Importing techniques such as these to the UK is extremely important, so that those with Ebstein’s can be offered a range of choices and options.  Whilst the U.S. commonly employs the cone repair, it is not offered to those in the UK.  Smaller numbers of people with Ebstein’s (smaller population) and a large number of UK hospitals dealing with this condition inevitably means that surgical expertise and experience is relatively low compared with the US.

Learning the cone technique

We wish to build on this important step, disseminating the technique to others, and continuing to develop the skills of surgeons such as Massimo.

You can help us achieve this by getting involved with ebsteins.org.

Fantastic first year achievements

In the first 12 months of our website launch we have recruited 167 members, had over 20,000 page views and have climbed from 18th to 3rd in the google search for Ebsteins.  Not bad, considering that Ebstein’s Anomaly is such a rare condition.  There have been some really touching comments since we started, and it seems the site has been a great support for some of you.  Please revisit the various blog areas to engage with the conversations on different subjects, and if possible load up a photo (avatar) of yourself so that other members of the community can see what you look like!

Keep the support going

Research into the conditions of Ebstein’s is notoriously underfunded, as it affects such a small segment of the population.  However, to those affected by Ebstein’s, understanding more about the condition it is crucial, for example is it genetic/ hereditary?  We need help to fund an epidemiological study in conjunction with Bristol children’s hospital.  Our target is to raise £40, 000 to pay for a clinical researcher for 12 months to establish the size and nature of the problem of Ebstein’s in the UK.  We have already had offers of help to do some fund raising, can you help?