newly diagnosed

08/12/08

If you or your child/relative or friend has just been diagnosed with Ebstein’s you may feel bewildered, anxious and probably know very little about this condition. Please use this section of the forum to ask for help and support from others who are a little further down the road (but who can still remember what it feels like to stand where you are now).

This part of the forum is for those people who have Ebstein’s and who are thinking about having a baby, or who are pregnant.  It is hoped that those people with Ebstein’s who have been through this experience will provide a valuable resource for you.  For some, it may simply be the question ‘is it possible’?

unborn babies

11/12/08

With the increasingly good ultrasound techniques more parents may find out that their baby has Ebstein’s before it is born.  It is likely that until the baby is born the severity of the condition may not be known.  If you are in this situation you are probably terrified at what you have just heard.  In this part of the forum we hope that others who have had this experience will be able to support you and give you advice.

As a mother of a child affected by Ebstein’s, I would be interested to hear the views of any adults as to what age they learned of their condition, and how (or if) they as an adult attempt to explain what Ebstein’s is to friends and collegues etc.  Is it an unhelpful label (other than medically) in the sense that most people haven’t heard of it, or do you just say “I have a heart problem”, or something similar?  What things cause the most frustration?

Thanks

Caroline

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