While my son was in the hospital having nearly died from dehydration from his surgery, I began noticing that when he ate, the area where they had attached the esophagus to the stomach would bulge. When it would bulge too much, he would cough up whatever he ate! I wondered what would happen if I put just a little pressure on it, so I worked up the courage to touch it when it was bulging… just a gentle touch was enough to send the food through the esophagus! Putting a little pressure on that area became a normal part of our feeding routine, and it was the only way to keep him from coughing back up what he ate. At four years old I began teaching him to manipulate this area of his neck on his own, and today at the age of 24, he still needs to do this!
Between the ages of 2 and 5, my son began having issues and needed dilatations weekly! Additionally, we were in the ER regularly having food that was lodged in his esophagus surgically removed! The list of foods he couldn’t eat kept growing and growing, to the point that it was difficult for him to get pudding down.
His doctors and surgeons agreed that he needed another surgery, but nobody in my area wanted to touch him, because they said that there was only one shot left to fix him. They said that if the surgery didn’t go well, he would never be able to eat through his mouth again! My son’s pediatrician finally referred us to a surgeon that was 2 1/2 hours away that also agreed that he needed surgery, didn’t want to touch him himself but told me about a surgeon who at the time was said to be the best in the world for EA repairs! This surgeon literally traveled around the world doing nothing but EA repairs.
I had to drive all the way to Michigan (over 10 hours away) to meet this surgeon and he agreed to do my son’s surgery. My son was five at the time. The surgery was successful, but this time we had issues with scar tissue that kept trying to close off the esophagus. When we got home, I ended up having to take him every-other-week for dilations (keep in mind that the nearest hospital that could deal with his condition was over an hour away, but we were now working with a surgeon that was 2 1/2 hours away!). From the ages of 5 to 10 years old, this was our life! I believed it would always be this difficult! My son could eat whatever he wanted, but he needed regular dilations to keep the scar tissue from restricting his intake!
At the age of 10, his regular surgeon was on vacation when a dilatation became necessary. I was very uncomfortable with the surgeon who met us in his place, who barely spoke English! This surgeon turned out to be truly God sent!! While my son was in the recovery room, he met with me and said that he decided to try something a little different. He went on to say that after the dilatation, he gave my son a shot of cortisone at the surgery site to see if it would help… my son is now 24 and since this dilation at the age of 10, he has not needed to see a surgeon and has had absolutely no issue with scar tissue or any issue getting food down!
After graduating from high school, My son had to jump through lots of hoops to get in, but he served as a Chemical, Biological, Radiological and Nuclear Specialist in the Army. He is currently a security guard and a licensed private investigator! To look at him today, you would never know that anything was ever wrong with him (except for all of his scars)!
There really is light at the end of the tunnel! Keep moving forward and you will eventually find it!