My daughter was diagnosed at the age of 2, and so far the only impact has been annual visits to the consultant.  She is now 7 and we are about to go again, and I know she is going to ask more questions.  Her father explained last year that she had a ‘squeaky door’ but I am not sure she really understood that, and I don’t think it will suffice this year.  I am worried that we need to give her enough knowledge to equip her to be able to tell us/or a teacher if she feels anything unusual.  Also, my brother always knew he had a heart complaint and I think he accepted it much more readily because he had ‘always known it’.  I am also worried that she may look it up on the internet and find out information which would be risky.  At the same time we don’t want to burden her with too much information and make her worry.

Anyone experienced similar debates?  How did you resolve them?

Thanks, Caroline

My babygirl, Ellie, was diagnosed with Ebstein’s in utero about 3 days before her due date. She was born via emergency c-section. She spent a few days in the Neonatal Intensive Care Unit for monitoring and an eating issue. Now, at almost 10 months, she is just like any other baby. Her cardiologist prescribed her Enalapril. I have done some reading up on the medicine and everything looks good. What I was wondering is if we should limit her sodium and cholesteral intake. Any information would be helpful.

Hello,

My daughter, the youngest of six (my eldest daughter having died of Aicardi Syndrome, another rare anomoly) was diagnosed with EA when she was a day old.  We have once/twice yearly vists to the cardio and, touch wood, they seem to be happy to keep an eye on her.  She has moderate regurge through the tricuspid valve and also has a hole in the heart, which they prefer to leave as they feel it relieves some pressure from the valve. She will be 8 in September and although we have always had episodes of turning blue – most noticably round the mouth and under her eyes, it seems to becoming more often.  So far the cardio has been happy again, just to keep an eye on this.  I, however, am feeling more anxious.  Has anyone else had experience of this.

Thank you

Susie

P.S. What a marvellous site, thank you

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.

Our son, Bill, was born with Ebstein Anomaly. For nine years, he had been constantly followed up by his cardiologist. Recently, his cardiologist, suggested an operation and referred us to a cardiothoracic & vascular surgeon. According to the surgeon, he will correct the Trascupid Valve (TV) and patch the Atrial Septal Defect (ASD). Besides that, Bill has a loose Mitral Valve that need to be fixed as well. His heart was also swollen by a little.

Throughout the nine years, Bill did not show any symptoms of blue or exhaustion, except for complaints of tiredness once in a while when performing sports activities. We are quite brothered by whether we should send him to the surgical table. In addition, the surgeon we approached had done only 5 cases and he was considered as the most experience in our country to have performed Ebstein Anomaly operation. So far all 5 cases are still alive.

The surgeon said that this would be an elective operation. We went to another surgeon and he too suggested that an operation if not done now will be necessary in the future. However, the operation risk and complication will increase as he aged.

Because Bill doesn’t really look that sick to be operated at all. That is why we are in a dilemma. I would like to seek any advise or views on whether we should go for the operation.

Hi all,
My daughter, Katie, a twin, was diagnosed at birth with EA. She is compensating well without meds but we have always known she would need surgery. The plan being, as with most, wait until she isn’t coping, as close to adult size heart as we can get, and then go in for repair/replacement.  Like all of you, I hit the info highway as hard as I could and have been stopping in for updates for the past 6 years. Two years ago, there was a post about the cone procedure….and the research I did following that made my heart skip…really!….a procedure that has such incredible success rates is truly more than we were ever allowed to hope fore.  So, began the long process of trying to change minds….what if we just sent her stuff to Dearani and the Mayo, just to see if she is a candidate.  Fine, our cardiologist did so, but our surgeon is reluctant.  Mayo says yes, she is a candidate.  So mom says, “We’re going”.  Cardiologist says just wait, lets talk to the surgeon and see what we can come up with.  Dr. Ross, our surgeon from Stollery in Alberta Canada decided that this was a good procedure and western Canada should learn it so would we be willing to have Katie operated on with Dr. Ross assisting Dearani in Edmonton.  Sure, whatever, just get it done.  Now Dr. Dearani has not responded to repeated requests for contact but a Dr. del Nido from Boston has agreed to do Katie’s procedure in Boston.  I have done a lot of research on Dearani but can find less on Dr. del Nido and his results.   Does anyone out there have some information on Harvard and/or del Nido’s publications/results.

Thanks, Alison in Canada

Hi,

My name is Emma and I have a small school on the island of Koh Samui in Thailand.  One of my students, a little boy called Rino, has just been (after literally years of doctors telling his family he would grow out of it) diagnosed with Ebsteins.  He saw a specialist in Bangkok who told him he will need surgery within a year.  His parents don’t have any insurance and the operation will cost somewhere in the region of 2 million baht, or 40,000 pounds.  We are setting up a website for him and are starting to organize fund raising events.  The reason I am putting this post up here is to ask for ideas and help.  He is an amazing little boy and I have come to love him very much over the last five years that I have known him.  He hasn’t had the easiest of lives and it breaks my heart to have to see him now go through this as well.  Any ideas will be gratefully received and when we have his blog set up I’ll post details of that too.

Thank you, Emma

My daughter Felisha was born in 1997 in Asheville, NC with moderate/severe EA. She ran and played like all the other kids but just tired a little sooner but she rested a little then went again. At age 5 Dr. Tripp at Asheville Cardialogy and Dr. Darani at the Mayo Clinic decided it was time to fix her valve so we got on the road to MN. She had her valve replaced with a pig valve and she has been doing great ever since. She now is 13 and the valve is leaking a little as expected, Dr. Darani said maybe it would last for 6 or 7 years. Darani and the guys at Mayo are alsome, and if anyone out there is trying to decide were to go for surgery, there is no better place to go in my opinion.

I am looking for some advice as feel very unsure what the future holds! Georgina is 3yrs and was diagnosed in Feb after many trips to hospital. She has been a very sick child and is now under the care of Great Ormond Street. she is seen every 8weeks and things have started to worsen! she has now developed an irregular heart beat. She has been put on medication but I can’t get her to take it (even tried hiding in food). She is very anxious about hospitals and I’am finding it a real battle to do the best for her. Her consultant has said he wants her to take the medication to buy us time before they do the valve repair but he is now worried her heart may be tiring as she has prollonged episods of fast heart rate which they are trying to controll
I was just looking for some who has experienced any of the above and can offer me some help.
Alex x

Is this normal with Ebstein’s that babies hate tummy time? He cries the whole time he is on his tummy. I only can deal with him crying for just a few minutes. I would love to know if anyone has had this experience. Does it hurt their chest? Is it too much “work” for them? His Ebstein’s isn’t severe but significant the cardiologist say. Anyone have any answers or any thoughts on this please email me or post on here! tommygirl_26201 [at] yahoo [dot] com

Thanks Melissa Ferrell

I recently ran across a site that said that one of the symptoms of EA was coughing. My almost 11 month old son has had a cough ever since he was born and was just wondering if this was true. Or is it just a coincedence? Just interested to hear of others that may have the “cough”.

Hi all, we are in New Zealand and my 4 year old son has been recently diagnosed with mild EA. I am trying to learn all we can about this and find any others in a similar situation but as it appears to be so rare there aren’t many out there who I can talk to! Patrick is under supervision of the cardiologists here and he is coping quite well so far. But this is all so new and I spend an awful lot of time worrying about him. He can still run around fairly well but tires easily and I have to work hard to get enough food into him sometimes (unless is chocolate of course!). Anyway, just wondering if there are any others in NZ?