Hi

This is a new site set up to help build a community of those with Ebsteins, and those who are involved in some other way with this condition.  Our long term aim is to raise awareness and fund important research, whilst also providing information and support.

I would like you to suggest ways to develop ebsteins.org – let me know what you would like to see on it, as I have set it up as a resource for all of you.

I would welcome all ideas and feedback.

Caroline

Hi
I am finding this site really useful,  and am really grateful for it. Now I can tell friends what Emmeline has and they can look it up. Its also good to read about other peoples experiences. Will there be more info about fundraising opportunities?

Katy

We’d really like to get to know you a little more here at the Ebsteins Society so we’re encouraging you to add an Avatar to your profile.  The Avatar is a little picture that automatically  accompanies your contributions to the site.  It makes it more personal and lets readers follow dialogs more easily.  So don’t be shy – show us who you are!

If you’re already registered with the Ebsteins Society then just log-in and visit your profile page. There’s a link under the “Name” section.  If you’ve not got an Avatar then there’s a little reminder when you register or make a comment or post.

My daughter Florence has Ebstein’s Anomaly, she was diagnosed at 3 months old after I took her to hospital because she had a cough that got gradually worse and she was very weezy. They told me that she had bronchiolitis but they kept her in because her oxygen saturation levels (SATS) were a considerable amount lower than they should have been. As she got over her illness in hospital they remained concerned because her SATS were not improving. She was then transferred to the Birmingham Children’s Hospital for further tests and it was there that she was diagnosed with Ebstein’s Anomaly.

Since her diagnosis she has been monitored at Birmingham Children’s Hospital every 4 months. In the very first appointment we was told her condition was mild although in the last appointment they told us that her condition was severe. They also told us in the last appointment that they are looking at doing keyhole surgery to repair the ASD (Atrial septal defect). They also told us that at some stage of her life she would need open heart surgery to correct the displaced and perforated valve.

We wanted to know more information about the cone procedure which we found on the website of Boston Children’s Hospital. We have since found more information on this website about the cone procedure being performed at Bristol Children’s Hospital and I was wondering if anyone has any more information on this procedure? We would also like to know if this procedure is available in any other hospitals in the UK?

Thank You