Ebstein's Anomaly Support Group

I am 36 weeks and my unborn son has recently been diagnosed with Epstein's Anomaly. I would like to chat with other parents who have children with this rare disease.

Hi JK,

I haven't got much time to write since I have to be a work here shortly, but I did want to touch base with you so you know that your post has not been ignored. My name is Mary. I am the group leader in the CHD forum and I watch EA for parents that need guidance ...AND for EBV people that have gone astray!

My son was not born with EA, but with a condition called Shone's Syndrome which is akin to Hypoplastic Left Heart Syndrome. He was a borderline HLHS case, but thankfully -- praise God! -- has outgrown that classification. He is currently 13 years old and in the 8th grade.

I hope that some of our EA moms will log on and help you out, unfortunately this forum has been largely inactive. But, you still have me! I don't know the particulars of EA except that it involves an undeveloped/underdeveloped, or otherwise deformed tricuspid valve. However, I do know what it is like to love and care for a child with a heart defect and undergo open heart surgery with them. Those kinds of fears and struggles I know.

Though I'd love to chat more, I do have to get to work, but I will check in later.

Hang in there and God bless,

Mary

Post edited by: KwiteKontrarie, at: 09/09/2011 06:10 AM

Garrett is home from the hospital. They say he has a moderate Ebstein's Anomaly, ASD and a heart murmur. He seems to be doing fine to me... it's just a wait and see for now.

So, the doctors feel that surgery is not necessary yet? Well, that is a good thing! Get a little growth behind him and any surgeries that might be necessary will be a bit easier to manage.

Praying that you and Garrett will continue to do well together.

~Mary

Garrett is 1 year old now. He is currently on 2 medicines. They are thinking they are going to need to do surgery to close his ASD soon. The right side of his heart is quite enlarged and the left ventricle is becoming stiffer from not filling all the way up.

Thanks for the update! I've wondered how Garrett's been. His pic is ADORABLE!

So, they feel that closing the ASD will help balance out the flow in the ventricles?

~Mary

The said that closing it will lessen the repeated work for the right side of his heart which is what is causing it to enlarge. One of the medicines they put him on is supposed to slow his heart rate which they said should allow the left ventricle to fill up more and that should help with the stiffness. At least that's how I understand it.

My son was born at 33 weeks with EA. They took him by c-section because he also had hydrops when he was born. He is now 4 years old and we have not had to have any surgeries for him. He spent 9 weeks in NICU and were told that he would need surgery before he left. So glad when the Dr are wrong that way!

Good to see you posting, Ladeda.

Glad to hear your son is doing well.

I have a good friend whose daughter was born with Hydrops about 13 years ago. Her condition was considered critical at that time, but with some research, my girlfriend was able to get her daughter the most excellent care! To see her now, you'd never know she ever had a health issue.

~Mary