Are you looking at the jumble of letters in the title and wondering if you can stomach another helping of alphabet soup? Believe me, if you were afflicted with EA/TEF, you wouldn’t be eating alphabet soup or anything else without emergency surgery.
EA stands for Esophageal Atresia, which is the new and improved name for a Tracheoesophageal Fistula (TEF), the condition our son was born with. Very briefly, esophageal atresia (or TEF for old timers like me) is a congenital defect. In most cases, the upper esophagus ends and does not connect with the lower esophagus and stomach. The top end of the lower esophagus connects to the windpipe. That’s the version Allen had. Immediate, major surgery was required to correct his plumbing issues, as is the case with all babies born with EA/TEF.
To read more about the condition, more information is available at www.DifferentDream.com, my website for parents of kids with special needs. You might also like this FaceBook page where parents of EA/TEF kids share experiences and seek advice: Bridging the Gap of EA/TEF. Since finding the group and it’s founder, Lori Dorman McGahan, I’ve swapped stories with parents whose vocabularies include words like seal cough, tracheomalacia, sphincter valve, and fundoplication. It is way cool.
During January, I’ll be featuring some of these families at the Different Dream website, if you’re interested. Many of their stories make Allen’s sound like a walk in the park. So take a gander if you like. And if you know a family dealing with EA/TEF, please pass on the information to them. It took me almost 28 years to connect with parents who identify with what we went through. No parent should ever have to wait that long again!
Here’s a note from Kristin Cooley that clarifies some of the information I gave about EA/TEF. I would have posted it at as a comment, but can’t get it to work. If anyone else is having the same trouble, please email me. The odds are slim that I can fix what’s wrong, but it’s worth a try. Now for Kristin’s information:
Hi, Jolene! Thanks so much for taking the time to help out the cause!!
I wanted to say that your second paragraph leads readers to believe that EA and TEF are the same thing; this is not the case. In fact, they are two completely distinct anomalies. EA, or esophageal atresia, is the ending of the esophagus in a blind pouch before it connects to the stomach. TEF, or tracheoesophageal atresia, is the abnormal connection of the esophagus to the trachea. While in a majority of cases they do co-exist, there are instances when EA occurs as an isolated anomaly, especially in long gap patients.
I know your son was born with EA/TEF, so I know the cause means as much to you as any of us. I just felt compelled to bring this to your attention because many of us will share your website with our friends and family who have a very basic understanding of this birth defect. So, for those of them who are trying to grasp the complexity of the birth defect, I wanted to make sure they got complete information.
Thank you,
Kristin
