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Steven's Story
Another Solution to Controlling Reflux: Steven's Story
Written by Kathy, Steven's mom
I am writing this article, because ever since I joined EA/TEF Child and Family Support Connection I have been hearing about families having problems with gastroesophageal reflux. The May 1997 EA/TEF Newsletter discussed this issue, but what I didn't find in the article is the procedure they did for my son, Steven.
My son, Steven, was born with a long gap esophageal atresia. Prior to and during the initial part of the surgery to repair his atresia, Steven's surgeon thought that a primary anastamosis would be possible. But during the operation the surgeon discovered that much of the upper part of the esophagus was just scar tissue. Attempts to suture the two ends of the esophagus together did not work because the tissue was so scarred that it fell apart. So, after many hours, they had to give up the effort to put the two ends together. Steven was given a spit fistula and gastrostomy tube. He was then sent home to grow and gain weight before his colonic interposition surgery.
On Steven's birthday, he had his colonic interposition surgery. Because his esophagus was so short, he had only two scars from the surgery: one in the neck where the colon was connected to the esophagus and the other along his abdomen. The first time I went to an EA/TEF meeting with other children with this problem, I thought I would see scars on them like those on Steven. But that was not the case and I knew that his esophageal atresia was different. Steven was also born with Down's Syndrome, which made his goals different from other children his age with EA/TEF.
After Steven's colonic interposition surgery, he began to have very bad esophageal reflux. So much so that we tried everything from continuous feeds (which seemed to make the reflux worse for him) to bolus feeds, which he tolerated better. But we were feeding him every hour and he would still reflux most, if not all, of his feedings. After trying many different combinations (none of which worked very well), our surgeon and we decided that a pyloroplasty was probably the best thing for my son. Since he had such bad reflux and so little of his own esophagus, we did not have any other options.
Steven's surgeon discussed the procedure with my husband and me and we felt that this would be the best thing for him. This procedure was performed by cutting through the muscle of the pylorus. The pylorus is the muscle between the stomach and small intestine. It controls how fast food leaves the stomach. By cutting the pylorus and sewing it back together so that the muscle doesn't work anymore, this allows the stomach to empty into the intestine faster and leaves very little food in the stomach to reflux.
This procedure makes lots of sense to me. When I was pregnant with my son, they could never see his stomach on ultrasound. So I began to think about the way a baby gets his nutrition. A baby who is born without any complications gets some of his nutrition by taking amniotic fluid into their mouth and swallowing it. It goes down their esophagus, enters the stomach and empties through the pylorus into the small intestine. This allows a certain amount of fluid to go through a normal intestinal tract day after day. Children born without an esophagus or a connection from the mouth to the stomach don't have fluid going through the system the same way. The stomach is totally bypassed. This would make the pylorus very tight because during the entire pregnancy, little, if any, fluid passes through the pylorus. So it made sense to me that some of the children with EA/TEF might possibly need their pylorus to be opened up somewhat. Opening the pylorus would allow the stomach to empty into the small intestine better and keep from refluxing back into the esophagus.
Steven had this procedure performed shortly after his colonic interposition surgery. There were potential complications with every surgery, but I haven't seen any. After the surgery we had to make sure that Steven sat up for 20 minutes after he ate so that the stomach could use gravity to empty faster. This would help prevent reflux.
We did have trouble-getting Steven to eat at first. He had been getting feedings by Gastrostomy tube only for almost two years. After a year when it would take an hour and a half to feed Steven, this all changed. Now Steven eats a ton. He does have a stricture where his esophagus and colon are connected and we have to massage Steven's neck to get the food past it. But this is getting better. Steven is five years old now and has not had any reflux or required any anti-reflux medications since his pyloroplasty. Steven is on Zantac to reduce the acid in his stomach since he once had an ulcer. Steven's only problem is the stricture. This is getting better, too. At first he needed to be dilated every month. Now it is every three months. Steven is still eating pureed food only, but mostly because of the stricture. Once the stricture is completely better, we will introduce more solid foods.
A pyloroplasty isn't for every child with EA/TEF. But I think that this option should be considered early in the life of children with EA/TEF. It may be another tool in controlling gastroesophageal reflux. I hope this article will be an incentive for parents to discuss this procedure with their doctors as a viable option.