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

Posted by nicolem.
 

4 Comments »

  1. I have created a new charity if u haven’t already found us, Ebsteins Anomaly Association of Australia , u can find us on facebook or click and by clicking on this link http://ebsteinsanomalyassociationaustralia.blogspot.com.au/

    take care :-)

    Comment by cwaldon — May 23, 2012 @ 9:36 am

  2. Hi, i too diagnosed with Ebstein anomaly at my first pregnancy in february this year(2012).I had my first child by an assisted vaginal delivary without complications. my story is similar to yours and missed the diagnosis at the childhood and now im 34yrs!, As im a doctor in profession i can understand what is happening and really worried.They said there’s mild regugitation of the valve and associated with a small ASD!!!; may not need of any intervention at the moment but need monitoring.the only thing i need is to live till my child reachesand her adulthood as i love her so much….and she really needs her mothers support.But who can tell about my age getting worst of the condition?, i feel like lost everything!!!

    Comment by Nadee — June 26, 2012 @ 7:04 am

  3. I am sure that your diagnosis of Ebsteins came as a terrible shock but please don’t feel like you have lost everything! You sound like you have coped well with the condition so far and probably would still not know if you hadn’t had the investigation done as a result of being pregnant. I hope you can draw comfort from that. I also hope that the first shock has worn off by now, and like me, you can focus on and trust in the way you feel today rather than let fear of what may or may not happen down the road play on you mind. The improved diagnosis techniques are great on the one hand since we can be monitored for any deterioration but on the flip side, diagnosis brings an anxiety and fear that we wouldn’t necessarily have had to deal with. Perhaps as more people are diagnosed with this condition who are not showing adverse symptoms we will find that our prognosis isn’t so bleak.

    Comment by nicolem — July 9, 2012 @ 12:40 am

  4. Hi Nadee

    I hope if you look round our site and read our posts you will see there is so much to be optimistic about. Interventions (for example the cone technique) are getting better all the time, and the majority of patients seem to have a very good quality of life. I echoe Nicole’s sentiments since 34 is a decent age to be diagnosed and therefore indicates it is not by any means along the severe end of the specturm. Read Elizabeth Smiths’s post – she was diagnosed at 55 and has recently undergone the cone repair. Now doing very well. Similarly see Margaret (or Jane as she is sometimes known) Smiths post. She was repaired at 55 and now has a new lease of life.

    Where do you live as you don’t mention this in your post
    Caroline

    Comment by caroline — July 10, 2012 @ 12:02 pm

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