Stretching the limits: For Elliot Cleckler, millimeters made all the difference in treating his esophageal atresia
Five weeks before his due date, Elliot Cleckler was diagnosed with esophageal atresia and tracheoesophageal fistula (TEF), an abnormal connection between the esophagus and the trachea that can cause food traveling down the esophagus or acid refluxing up from the stomach to pass into the lungs. His parents, Jay and Heather, were upset but hopeful. “We left that meeting thinking, it could be so much worse; at least it’s just an esophagus,” says Jay.
“Everyone told us not to look up LGEA on the Internet,” says Jay. “So, of course we did.” What Jay and Heather found were stories of children like Elliot, who endured failed surgery after failed surgery. Many of the “success” stories they found centered on colonic transposition, in which a piece of excess colon is stitched into place as a replacement esophagus, and gastric pull-up, where the stomach is forced up into the chest and connected directly to the top section of esophagus. But both procedures have significant drawbacks.
Elliot’s surgeons instead advocated for attempting to stretch the two nubs of his esophagus over time to see if the ends could be made to meet, but the Clecklers had reservations. In the best cases, stretching still constricts the internal flow through the esophagus and thins the external walls, making them less resilient. In the worst cases, the esophagus, like a rubber band, will tear if it reaches its elastic limit.
None of the options gave the Clecklers much hope. “We kept coming across statistics showing increased esophageal cancer rates and low growth percentiles,” says Heather. “All of a sudden we realized we had gone from reading scary stories to living one”…
Read more about Elliot’s journey at http://www.childrenshospital.org/dream/winter10/stretching_the_limits.html.