Does anyone know if EA is genetic? My ex-husband had corrective surgery at UCLA for Ebstein’s Anomaly and WPW. Our son is now 13 and having short of breath problems.
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Does anyone know if EA is genetic? My ex-husband had corrective surgery at UCLA for Ebstein’s Anomaly and WPW. Our son is now 13 and having short of breath problems.
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Hi
I think that is a $64,000 question. As we say on our site there needs to be a lot more research done on EA to confirm/support this notion and it is only one important part of future work.
I would say this however; my brother had Wolff Parkinson White (WPW) and I have heard similar stories of those on this and other sites where a relative or another sibling has a closely related condition. You need to request an Echocardiogram, there should be no problem in securing this, which will tell you for sure what it going on.
Good luck and please let us know how you get on
Caroline
Comment by caroline — September 7, 2009 @ 2:42 pm
Hi,
I have recently been told by my cardiologist that there is a genetic component to Ebstein’s Anomaly. However, chances of passing it on are rare. I agree with Caroline as an Echocardiogram will determine if your son has any cardiac problems.
Maria
Comment by Maria — November 27, 2009 @ 1:09 pm
i had a baby girl who was born sleeping who had severe EA. i have had in the past chest pain when i was around 10 and i have regular blue lips and fingernails, and when i exercise i go really red in the face. recently though i have had some chest pains on both sides of my chest. i consider myself healthy though but wondered if there was a link as my half brother was born with a hole in his heart. please let me know what you think.
Comment by sarelle69 — February 15, 2010 @ 8:10 pm
A difficult one, this is anecdotal but so far everyone I have talked to with EA or with a child with EA does have a relative with a heart issue of some sort. When Florrie was diagnosed I asked for an echo and was given one (which was fine) so I am sure you would be well within your rights to request the same…? My brother has Wolff Parkinson White syndrome.
Caroline
Comment by caroline — March 10, 2010 @ 9:43 am
I am a 60-year old female who was diagnosed with EA at age 19. I was not born blue and have had a perfectly normal life. I have worked as a teacher for 35 years and been extremely physically active. I feel excellent keeping my weight down and watching sodium and heavy meals in general. In fact, I try to eat small meals all day. In 2002 I had a pericardial infection which started my first bout with AF which I have continued to have and controlled through Digoxin and Coumadin. My mother was sick with Parkinson’s Disease and I have no idea if this anomaly was past down through the genes. I am excited about this website. For the first time in almost 40 years of living with EA I might have somebody to share stories with.
Comment by Sue — May 11, 2010 @ 5:21 am
Sue
Thank you so much for you comments (particularly the last few lines) which reinforce the idea of our website as a space for people to form a community. Your story is a very postive one and hopefully will encourage other members.
Can you let us know which country you live in?
Comment by caroline — May 11, 2010 @ 10:54 am
I am a mother with AE (diagnosed around age 37) who has a son with AE(diagnosed at age 2-1/2, now 21). My valve was repairable, his was not. He currently has a tissue valve which was placed when he was 6. It is now too small and showing signs of stenosis, and he is facing another surgery. We have been involved in several studies, as have the other members of my family. At this point they believe there is some indication that a genetic link exists, but we did not receive any specific information indicating the link. At our last visit, the Cardiologist indicated that our son’s risk of having a child with AE is greater because we both have AE.
Comment by Pat — May 21, 2010 @ 3:11 pm
Very good friends of ours have two children w/ EA, one mild, one had open heart surgery before one year old, and an aunt w/ mild EA. So yes, it can be genetic and run in families.
This was not known at the time the first child had surgery. After surgery they parents opted to have the two older children have echo’s… sure enough their oldest child had mild EA. So then the parents and all aunts and uncles were tested and it was the sister of the children’s father who had mild EA. So yes, very very rare, but it can be genetic/run in families.
Comment by Paula C — July 28, 2010 @ 3:31 am
I believe EA is heredity. I have a 2 1/2 yr old that has EA which is moderate to extreme. I would have another daughter that was a stillborn. She would be 8 years old. She was born with fluid on her heart that was called “Hydrop”. The daddy of both of them has another son with a heart murmur. I don’t get it. They tell you nothing.
Comment by linda — August 28, 2010 @ 4:29 am
I’m definitely going to have to have to look into this hereditary thing. I’ve never known of anyone who has had any heart condition on my side of the family and my husbands family does not have any history either. But we found out our son due August 17th has severe EA. And my sister-in-law (my brothers wife) who is due August 19th found out that their daughter has a heart murmur. Their baby is okay now that my sister-in-law has stopped drinking all caffeine. Which brings me to another question. My doctor said that it’s still okay for me to drink caffeine in moderation and to exercise. I told him that I do things like TaeBo and hour dance video’s. It’s not like I am walking or doing low intensity exercises. I feel fine when I’m doing them and great afterward, but I wonder if it’s putting more stress on Josiah’s heart. And if the caffeine is also putting added stress. Does anyone know? Thanks for your input.
Comment by Mindy — April 17, 2011 @ 4:30 pm
My mother who is 67 suffered a major stroke 7 weeks ago and a heart scan has revealed that she hasa mild Ebsteins anomally, doctors are astounded that this has gone undetected for years and that she didnt really notice it until she started to get sick last year. I am concerned that I myself have problems as I have suffered palpatations and heart fluttering for years but always put this down to my medication for an underactive thyroid, I am 40. I am now going to contact my GP to see if I can have tests done.
Comment by Jenny Logan — October 28, 2011 @ 2:17 pm
Hi, I would say there is definitely a genetic factor to it. My cousin, my mum, and my sister have all been diagnosed with Ebsteins – and who knows how many mroe in our large family have it without knowing, but even three in one family is too many to be coincidence. My sister was diagnosed in her teens, my cousing was diagnosed in her early 50′s and has had surgery for it, my mum has only just been diagnosed and she’s in her late 70′s.
Comment by Christine — November 4, 2011 @ 5:02 pm
Good Morning from USA,
I have just come back from the cardiologist whom I asked about having children. As I am getting older in life I realize that children is something I want to have and have lots of them! I was informed that it is not very likely that my children will be born with EA. Only a 3-5% chance of this happening. I was glad to hear that it is not commonly passed on.
I hope this information is helpful to you!
-H
Comment by EbHeart27 — November 16, 2011 @ 7:22 pm
Here is a 2011 article from Science Daily documenting that there is a GENE that is related to these congenital heart defects.
Science Daily – Feb 16, 2011
http://www.sciencedaily.com/releases/2011/02/110216110546.htm
Please see my post documenting my own family’s heart history (on the maternal side) in the thread asking if it’s useful to mention Ebsteins. (Top of comments page.) By and large, this inherited murmur has not cut life short, nor denied us healthy children.
Comment by Lynn — March 17, 2012 @ 4:10 pm