The First International Workshop on Esophageal Atresia will take place in France in the Spring of 2010. Doctors will gather to discuss topics such as genetics, surgical procedures, reflux, complications, and quality of life issues.

http://www.esophageal-atresia2010.com/

by Claudia Z., Spring 1999

In 1953 Claudia was one of the earliest survivors of EA/TEF. In 1988, she was repaired for a second time at the age of 35. Ten years later she made her first connections to the EA/TEF community. Now Claudia, and her surgeon Dr. Juda Jona, share her story with us.

by Amy D., Fall 2002

Our precious baby boy was born. Oh, I felt so much relief that he was finally here, September 20, 1998, after a long 36 weeks. As I received a thumbs up from the observing pediatrician, I felt relieved and ready for rest. As I was moved into a private room, my husband went with the baby to the nursery. After 20 minutes went by I was so ready to see my new bundle of joy! No one was around, no nurse, no relatives--it seemed as if I was the only one in the hospital.

We love hearing updates from people. Here's one that came in recently:

I've finally gotten around to creating a Facebook page for us:

http://www.facebook.com/pages/EATEF-Family-Support-Connection/78418175958

Enjoy!

We would like to have some parent input regarding what medical information they would like to have regarding EA/TEF and ongoing care and issues. Time commitment would be 1-2 phone conferences a month for possibly a few months.

Please private message me or email me if interested. We're looking to have the first phone conference at the end of May.

Thanks,

Matt

Dr. Daryl A. Scott and researchers in his laboratory are working to identify the genes that cause EA/TEF. A brief description of his research can be found at http://www.bcm.edu/genetics/?pmid=11041. Families interested in learning more about participating in genetic studies on EA/TEF can contact him via e-mail at dscott@bcm.tmc.edu.

Daryl A. Scott, MD/PhD
Baylor College of Medicine
R813, One Baylor Plaza
Mail Stop: BCM 225
Houston, TX 77030

E-mail: dscott@bcm.tmc.edu

Web page: http://www.bcm.edu/genetics/?pmid=11041

There are so many things to learn when you have a child born with ea/tef that certain aspects of the condition remain a little fuzzy for a while. You figure out the eating stuff quickly. And surgeries, you focus on those too. But you keep hearing one word that you can’t quite keep in your head, the whole word anyway: trachea- something.

Strictures develop post surgery usually because scar tissue grows at the surgery site. Scar tissue, sadly, is inevitable, but not all ea/tef children are affected by it. Some have their esophagus repaired and never look back. Others need a few post-op dilations early on before being able to take the surgeon’s phone number off the speed dial.

A few ea/tef children need to be dilated even years after surgery. My son is one of those. After the dozens of dilations he had early on, going in twice a year to be dilated seems pretty manageable, if not exactly fun.