02-01-2003

(a listserv response)

Astrid's had her first fundoplication when she was 15 months old, and it failed within 6 months. We had hers redone right away -- she was having trouble breathing at night because she was aspirating that refluxed material and it was damaging her lungs. We knew that this was only going to get worse, and she'd end up oxygen dependent, so we had very little choice. She also had developed a paraesophageal hernia. (Her situation was further complicated in that she used to have these "spells" during which she would stop breathing. We also thought those were related to reflux, but it appears that they were primarily related to a small congenital hernia of her diaphragm that hadn't yet been discovered. That hernia was repaired along with the redo of her fundo, and almost all of those "spells" stopped.)

Astrid's second fundo also only lasted about 6 months. We saw that Astrid was having more and more trouble breathing at night, just like the first time her fundo failed. Because Astrid had 2 fundos fail within such a short period of time, and because she aspirates her food and we don't expect her to ever eat orally, we opted for a not commonly used procedure called an esophagogastric dissociation. Her esophagus and stomach were separated, and the lower end of her esophagus was connected into her jejunum (intestines) so she can swallow her secretions, but could never eat big meals by mouth. Her stomach still empties into her intestines, and so she can take bolus feedings by g-tube. This has worked beautifully for her, and we're extremely glad we decided to do this.

The thing that we may have missed was food allergies. We only very recenlty learned that Astrid is allergic to soy, milk, and corn, all of which are in Pediasure. Astrid used to retch a lot (at least once a day), and we suspect that was why her fundos didn't hold. Once we switched her formula to something she is not allergic to, almost all of that retching stopped. Someone on another list suggested food allergies after Astrid's second fundo failed, but I brushed that off, thinking that we weren't really seeing any signs of food allergies. (It totally didn't occur to me that the retching could be food allergy related. I was stuck on the idea that retching was due to having an overfull tummy.) But now I'm starting to wonder -- if we'd caught the food allergies earlier, would the reduced retching have caused that fundo to hold better? I don't know the answer, but if I could go back and do it again, I'd have definitely pursued food allergies much earlier.

At the time, we found some medical journal articles about fundoplication failure rates, which are quite high, especially for kids with neurological disorders. (I want to say about 10-20% of them fail.) Second fundoplications failed about as often as first ones. I seem to recall that some of the risk factors for failure (other than neuroligical disorders) were retching and seizures. (I'm sure there were others, but those were the two that I found pertinent.)

I hope this helps. Of course, this is just how things went for Astrid, and your situation may be totally different.

Ande, Astrid and Ursula's mother