The surgery recommended to aid in controlling Nolan's acid reflux is called a fundoplication. Essentially, the surgeon takes the top part of the stomach (the fundus) and wraps it around the esophagus. This tightens the lower esophageal sphincter, and helps to prevent reflux. It is a remarkable cure for reflux for some children.
So why would we question its necessity?
For some children, the quality of life is worse after fundoplication. Depending on how tight the wrap is, kids may not be able to burp or vomit. This can lead to a painful condition called gas bloat, particularly for children who do not have a g-tube. Retching is another side effect that can occur - some children get the dry heaves after the procedure, and it is extremely debilitating. Kids have to go on a liquid diet for a period after the surgery, then they are advanced to a pureed diet - after several weeks, carefully chewed solid food is allowed. Because the lower esophageal sphincter is tight, some children may choke or be unable to swallow larger lumps of food.
Most of the kids who have negative side effects are those with pre-existing motility issues: the peristaltic action in the stomach or esophagus is reduced.
We know Nolan has borderline/mild delayed gastric emptying. There is some question as to the accuracy of the test he had performed, since his gastric emptying scintiscan was not performed with one of the foods with a known digestion time. In addition, the definition for pediatric delayed gastric emptying varies widely by clinic. Nolan had about 25% emptying after one hour - in our area, that is considered mild. In others, that would be considered flat-out delayed emptying.
His first impedance probe also showed a slowed bolus transit time for his esophagus. This means that food doesn't pass efficiently from his mouth to his stomach, and a fundoplication could cause this situation to worsen in intensity. Here is a story of a child who had a fundoplication with undiagnosed motility problems, and she had several complications post-fundoplication.
There are very few motility centers in the United States. There is one in Boston, and one in Cincinatti. Prior to consenting to a fundoplication, we must have motility testing performed to verify that Nolan's reflux is "uncomplicated." For many children, the motility disorder is the cause of the reflux - and motility medications can be added to increase the peristaltic contractions. This helps to reduce the amount of reflux occuring.
Kids who have one fundoplication performed are at risk for the wrap slipping and causing a hiatal hernia, which requires another fundoplication - the procedure is irreversible, and the potential for more surgeries down the line remains.
Added to the motility concerns is the possibility that Nolan's hypopneas are caused by his low muscle tone, and not because of the reflux. Children with low muscle tone (hypotonia) are prone to obstructive apnea. In this case, a BiPap would be the best solution for his apnea. This is why we have booked an appointment with his sleep neurologist, to discuss his opinion on Nolan's tone and the potential efficacy of a BiPap machine.
If we finish our investigation and find that 1) Nolan has no underlying condition, 2) there is not a complicating motility problem, and 3) the only way to help the apnea is to do a fundoplication, then we will move forward with the procedure. Until then, we have a lot of research to do to ensure the best decisions are made for Nolan.