BBC Radio Bristol Highlights achievement of  Massimo Caputo and the Ebsteins Society

ES medical adviser Massimo Caputo and Ebsteins Society Supporter Elizabeth Smith talk to BBC Radio Bristol.  Elizabeth underwent a successful repair of her Ebsteins using the pioneering cone technique last year thanks to Dr Da Silva’s visit to the UK.  Tune in to hear Elizabeth talk about her experiences and how the surgery has transformed her life and to hear Massimo talk about how the technique is being disseminated to other surgical centers in the UK.

Just wondering if anybody has had the hole in the heart sealed with EA and has it been beneficial. I have not been opperated on before and my hospital are on about sealing the hole in my heart up before fixing the valve problem. I luckly only have very minor symtoms with EA for the past 20 years and i have not got any worse.

 

Hi,

I would like to say thank-you for this website. It has been a great resource in finding out about EA.

I was given a definitive diagnosis of EA when I was pregnant with my second child and my obstetrician thought it would be worthwhile establishing the cause of my heart murmur. I was originally diagnosed when I was 8 after being monitored since infancy for a possible hole in my heart. However I didn’t have a name to put to my condition and my parents really had very little information that they could give me other than they were told by the cardiologist that as I grew the problem would get better; that everything was OK; I didn’t have the hole in my heart they initially thought I had; and to go away and live a normal life.

It therefore came as a bit of a shock when i was told that I had a very rare heart abnormality called Epstein’s Anomaly and that I was a ‘rare bird’ since not many people with my condition had had children. I was monitored for the rest of my pregnancy and was induced on my due date (even though with my first, ignorant that I had EA, I had gone 10 days over!).

After my diagnosis I went on with my life as normal with the exception of a check up every 2 years. My cardiologist hasn’t given me a lot of information over the years about my condition so I decided to do a bit of investigation myself. I was shocked (again) to discover that EA can be a fatal condition and can have significant implications for many. I guess ignorance is bliss.

I am writing this today because tomorrow I have my 2 yearly check up with my cardiologist and my condition starts to play on my mind. I am now 46 years old and as far as I am aware not suffering any ill effects despite having ‘severe regurgitation’ and enlargement of my right atrium. I hope the news is good tomorrow and that there has been no change as has been the case at my previous check ups. I think sometimes it would be nice to go back to not understanding too much about my condition.

I am thankful that I have been relatively lucky not to have been affected by EA so far and hopefully give some assurance to parents of babies born with EA that it is possible to live a normal life.

Nicole – Australia