Ebstein's Anomaly - Heart Disorders Message Board

GaryG01 · 07-08-2002, 03:20 PM

My daughter, who is now 3, was born with Ebstein's Anomaly of the Tricuspid Valve. She is scheduled for heart surgery in a month at the Mayo Clinic in Rochester, Minnesota.

Any advice, opinions, experiences, etc.....that anyone can share with us would be appreciated. We're not finding much support, since this is a rare heart disorder. Thanks.

valerie04 · 01-05-2005, 05:05 PM

I am a first time mother with 11 weeks to go until delivery. I just found out that there are several complications with my unborn daughter, one of which appears to be Ebstein's anomaly. I am researching this condition to find out all I can. I have also been told that she has a large amount of fluid built up around her heart and in her abdomen, as well as having only one kidney and an umbilical cord that is not fully developed. I have been checking the Internet to find info about Ebstein's, but please share what you know about this condition with me.

Debrae · 01-27-2005, 09:02 AM

I am a 52 yr. old "healthy female " with Eipsteins anomaly. My life long symptoms have been periods of irregular heartbeats and some A-fib. I am a mild case withonly moderate tri-cuspid leakage and no hole in my heart. My condition for now is controlled by meds. I send my thoughts of healing to your daughter.

hypokelly · 01-27-2005, 05:24 PM

Dear GaryG,
My heart and prayers go out to you and your daughter, as I know what you are going through.My daughter has had 3 open heart surgeries.She is now 11 and is doing well other than having heart block issues.
I do not know anything about her particular condition,but I do know that heart surgery has come a long way, I just want you to be aware that some info you might get from the web or libraries could be outdated.After my daughter had her first surgery I found an article about her condition(interupted aortic arch)that this condition did not have a good outcome......well I lost it......little did I know the article was outdated by many years.
Debrae is living proof that your daughter will be alright.You have to think postively.I know the stress you are going through.My daughter was 3 for her last surgery........Ohhh boy do I know what your going through.
wishing you well
my thoughts and prayers are with you,
kelly