Wallace's Story

Wallace was born at 28 weeks, 3 days with an extreme version of Esophageal Atresia/Tracheoesophageal Fistula (EA/TEF). For those that haven’t heard of this birth defect, it’s where the part of the esophagus that comes down from the mouth is just hanging there, ending in a pouch that formed from being stretched out when the amniotic fluid had nowhere to go in-vitro. The part of the esophagus that comes up from the stomach, in his case, veered over and connected into his trachea. He was getting stomach acid in his lungs and air in his intestines. He suffered a grade three brain hemorrhage during his first surgery to clip off the part of the esophagus that connected to his trachea the day after he was born.

The healing of the hemorrhage led to hydrocephalus. The surgeon put a reservoir in his brain which caused him to develop meningitis, which led to more brain surgeries as he barely clung to life. Eventually, he was big enough to have surgery to connect the two pieces of his esophagus, but the gap was so long that he tore through the stitches and has lots of scar tissue at the site of the connection. He laid on his back in the NICU for months while the leak in his esophagus slowly healed closed, and we were finally able to remove the drain tube from his chest. We spent 208 grueling days in the NICU.

Since August of 2020, Wallace has undergone roughly twenty dilations on his esophagus to finally get him to a point where the surgeon thought he might be able to swallow food. There were quite a few other things, health-wise, that he suffered from, but these details were the biggest factors in his inability to eat. We didn’t know if he could actually swallow food/liquids because he couldn’t have a swallow study to see unless he was taking some by mouth. The method the speech therapist was using was getting us nowhere. In fact, I’m sure it made his oral aversion worse.

Enter GIE.

We started our wean with GIE on July 28th at 17 months, 14 corrected. Wallace had never taken anything by mouth at that point, except for the “tastes” that the speech therapist forced upon this unwilling child. He would gag and vomit constantly from it. Wally was on a ventilator for many months of his short life, had a Replogle down his throat for almost half of it, and required emergency suction frequently. He would cry if I put him in his high chair and get distressed anytime I put a bib on him. All of this to say, his oral aversion was pretty bad. And yet, here it is, barely a month later, and Wallace is devouring food like a champ. Pictured below, he is clearly enjoying a delicious meal of my puréed leftovers from last night’s dinner, lamb saag.

This isn’t to say we aren’t without our own challenges. He absolutely will not eat store-bought baby food, and sometimes it’s just not convenient to have to purée every meal for him. Somehow he knows when I serve him baby food, even if I try to hide the pouch/jar from him. Even if I doctor it up with spices or butter. Even if I heat it up first. I don’t know how he can tell, but he will take one taste and then refuse anymore. Wallace won’t feed himself. He has some developmental delays, but we will work through them. He also won’t drink anything. He licked water off a chunk of watermelon today, but that’s about as good as it gets for hydration so far. And I think that last part bears repeating: so far.

I just wanted to tell our story because I know that when I first was looking at GIE, I had a lot of trouble finding anybody with an EA/TEF baby. I thought that our situation was different from most I read about on here. But what I’ve learned is that it comes down to GIE’s philosophy and methodology that works, regardless of our diagnosis. I’m usually a very private person and haven’t posted anything on Facebook about my son, but I am so glad I found GIE to help us wean that I felt compelled to let others know. If you’re considering contacting them, in my opinion, the sooner, the better!