PAGER used to do very long, print newsletters. This one focused on surgery. It was written in 1999 and is still pretty relevant. It does not include the new intraluminal techniques which are alternatives that are not yet available for children.

What About Anti-Reflux Surgery?

Welcome to the first in a series of conundrum issues. The dictionary defines a conundrum as a question that has as its answer another question. A pretty appropriate word for a medical condition in which there are no cures, only a number of imperfect treatments and few occasions where the choice is obvious. As we said in the last newsletter, GER is a mystery disease in the what-do-we-do-about-it sense. A conundrum condition.

As we prepared to do this issue, the stack of articles on surgery that Joel gathered was impressive. No doubt, somewhere within it there are some good answers. But the more we examined our original plan to bring you a fabulous, up-to-the-minute description of all the anti-reflux surgeries, the more we realized what an impossible task this was. Our understanding of GER has changed dramatically in the past four years and the pace seems to be picking up. A thorough update on surgery would be outdated before you received it. (Not that we have the staff to write one - this took 2 1/2 months!) This issue of the Reflux Digest does give you some basic information on anti-reflux surgery but we have tried to concentrate more on how a parent makes a decision about surgery. A tough assignment but Caroline did a great job!

Introduction by Caroline

When Beth first asked me to write for the surgery issue, my initial response was very positive. I welcomed the chance to inform you, our members, about the very viable option of fundoplication; the life-saving potential, as well as the important negative complications that can occur post-operatively. As I read through the journal articles and drew on my family's two experiences with fundoplication, my response changed somewhat. I faced the great challenge to educate and inform you about the surgery, yet not alarm or persuade you one way or another regarding fundoplication. You, your family, and team of physicians need to make the choice that is right for your child. One must remember that there is no perfect surgery for reflux just as there is no perfect medication, and while it may be the only choice many of us have, we need to understand that this is not a cure.

"One must appreciate the scope and magnitude of this condition. " What a great sentence about such a complicated and frustrating disorder/disease. One I hope every family and physician remembers!


What is anti-reflux surgery?

Fundoplication is the most common type of anti-reflux surgery and appears to be the only one currently done on children. The goal of anti-reflux surgery is to keeping food and acid from backwashing by using the muscles of the upper portion of the stomach (fundus) to help the sphincter between the stomach and esophagus (lower esophageal sphincter or LES) work better. The fundus is wrapped around the bottom few centimeters of the esophagus so that the contraction of the stomach muscles squeezes the LES just enough to keep it closed most of the time but still allow swallowing and belching.

The most important thing to remember is that surgery is a mechanical way to suppress symptoms of a disorder that is seldom mechanical in nature. Pharmacotherapy is also primarily an attempt to suppress symptoms. Neither is a "cure." Both have side effects / complications but so does uncontrolled reflux.

The Nissen version of the fundoplication (shown above) has been performed since the 1960's and more is known about its effectiveness than about newer techniques. The Nissen wrap involves bringing the fundus full circle around the esophagus (360 ) from the back (posterior) and stitching in the front. Other techniques are variations involving: wrapping less than 360 ; how much the stomach is pulled up and how much of the esophagus it covers; whether the stomach is fully or partially loosened from surrounding tissue (mobilized); precisely how damage to nerves is prevented; whether a tube is inserted into the esophagus to prevent over tightening of the wrap; whether the surgeon proceeds clockwise or counter clockwise; ad nauseam.

"Laparoscopic fundoplication" does not refer to the type of fundoplication but the type of incision made to access the stomach. In this technique a number of very small incisions are made in the abdomen and a fiber optic camera is used along with other special instruments. The smaller incisions drastically decrease hospitalization time because the incisions heal quicker. The actual surgery takes longer and is obviously a bit trickier to learn but many surgeons and patients prefer it. It is not clear whether total recovery time is shorter.

How Common is Fundoplication Surgery?

Anti-reflux surgery is the third most common surgical procedure performed on kids. Inguinal hernia repair, and central venous catheter placement are more common. GER, however, not the only reason a fundoplication is performed. It is done in conjunction with repairs of birth defects of the esophagus, after placement of a g-tube and it is more common in patients who also have other serious medical problems.

Have There Been Fluctuations in the Popularity of Fundoplications?

Improvements in any treatment can lead to a pendulum swing in favor of that treatment just as studies highlighting problems can provoke a swing away from a given treatment. Recent studies about the efficacy of medications may be provoking a trend toward surgery. A few surgeons are also questioning whether the results of surgery would be better if the patients choosing surgery were not already in such bad shape - certain technical variations can't be performed if the damage is too great. A valid question.

There are other anti-reflux procedures that are not often performed on kids. The Angelchik prosthesis is a silicone collar that is placed around the LES. Problems with them migrating and puncturing organs seems to be overshadowing any positive traits.

What are Some Indications for Anti-Reflux Surgery?

The decision to consider surgery is usually made if one or more of the following conditions is present:
Esophagitis - mild to severe damage to esophagus.
Apnea / Apparent-Life-Threatening-Event - cessation of breathing, possibly as a reaction to refluxate threatening the airway. An overly aggressive protection instinct can result in a spasm of the airway (laryngospasm / obstructive apnea).
Failure to thrive - failure to gain or maintain weight can eventually lead to developmental problems or compromise overall health.
Pneumonia / Asthma - aspiration of acid or acid vapors. May be a crisis situation if medication is not quickly effective.
Airway Damage - from acid exposure. Lung problems are not always audible with a stethoscope. Nasal polyps and vocal cord nodules are not always recognized as possible symptoms of GER.
Strictures - scaring of the esophagus. Often narrows the opening and interferes with swallowing. Often recurs even when GER is controlled by meds or surgery.
Barrett's Esophagus - precancerous changes in the esophageal tissue. May not be as rare in children as previously assumed. It is not clear whether a fundoplication will reverse or stop the changes.
Quality of Life Issues - pain that interferes with daily activities.
G-tube - surgically placed port for introducing food through the abdominal wall. Children who have one often develop reflux. This may be because the stomach is unable to move. New tube styles may help.

When Should Surgery be Considered?

The criteria for determining whether a child is a candidate for surgery are not set in stone. There are a number of questions that parents should discuss with their primary care doctor and all specialists.

? Is the GER causing damage that may not be reversible?
? Is the GER causing life threatening symptoms?
? Is this a crisis or is there time to explore options?
? Are symptoms not adequately controlled by medications?
? Do symptoms recur when medication is withdrawn?
? Have all medications and combinations been thoroughly explored?
? What is known at the present time about the long-term affects of medications?
? How does this compare with current concerns about uncontrolled, chronic reflux?
? Does full compliance with positioning and feeding techniques make a difference?
? Have helpful techniques been applied consistently?
? Is the child young enough that the GER can still be expected to resolve?
? In the parents' opinion, is the pain experienced by the child impacting on his quality of life?
? Is tube feeding a medical option and practical option?
? Has testing shown GER or the symptoms of GER?
? Have there been contradictory tests?
? Have any tests been suggestive of another medical problem?
? Have other conditions that cause GER symptoms been fully ruled out? (We will be addressing this in a later issue of Reflux Digest.)

Children with other serious medical disorders often have GER. Unfortunately, they are less likely to respond to medications and experience a much higher rate of serious complications with medicines, anesthesia, and surgery. Many of these kids are hospitalized on multiple occasions and compromised nutrition can be a complicating factor.

Children with digestive system abnormalities, cystic fibrosis, pulmonary disease, genetic disorders, neurologic disorders, seizures, muscular disorders, cyclic vomiting, allergies, conditions requiring supine or head down positioning, and kids with unusual posture (scoliosis, body casts etc) are all at risk for reflux and often difficult to treat.

? If the child has other medical issues, have you fully investigated the impact on all of the available options?

When is Surgery Contraindicated?

Children with delayed emptying or motility disorders are not good candidates for fundoplications. Fundoplication alone is not done on children with swallowing disorders because the food will not move into the stomach.

What Tests Should be Performed Prior to Surgery?

Sometimes several tests are needed to make this critical decision.

Barium swallow or upper g.i. - contrast x-ray done to rule out anatomical problems like large scars or a rotated stomach. If done on videotape with an experienced radiologist or speech therapist, it can diagnose ineffective swallowing which is a contraindication for anti-reflux surgery. A longer duration test can show delayed emptying.

Endoscopy / Esophagoscopy / with biopsy - fiber optic camera allows visualization of the esophagus. Some damage is visible with an endoscope but biopsies (tissue samples) can reveal microscopic damage. Incapacitating pain without severe damage may still warrant surgery.

pH monitoring - esophageal acid measurement continues to be the "gold standard" for diagnosing reflux. The major drawback is that a "positive" test reflects the number of events but even an isolated reflux event can cause life-threatening problems. Events immediately after meals or acid mixed with bile (alkaline) does not register but can cause significant damage. Conversely, high acid levels don't always cause damage. Portable machines are preferable because no hospitalization is required and they show more about reflux in real life conditions.

Scintigraphy / Milk Scan / Gastric Emptying study - uses a radio isotope to track how long food remains in the stomach and whether it enters the airway. Suspected or confirmed motility disorders are reasons to decide against surgery. A very traumatic test. Diagnosis of delayed emptying means other options or simultaneous stretching of the pylorus at the bottom of the stomach (pyloroplasty) need to be discussed.

Manometry - measures the pressure of the sphincter areas and the effectiveness and coordination of peristaltic action that moves food the correct direction. Still mostly a research tool.

Allergy testing - neither traditional or nor non-traditional testing are recommended very often by the experts but it is strongly suggested by many of our parents. [See the letter below.]

How Effective is Surgery?

This is a difficult question for anybody to answer. It is measured differently by different researchers. Whether or not refluxing is totally stopped can't be known for sure because only those patients with significant symptoms after surgery are retested. Many patients do not answer follow-up questionnaires. Whether or not the original symptoms subside seems to depend somewhat on how severe they were, which symptoms they were, and whether there were coexisting medical problems. Many studies compare the outcomes of specific surgical techniques but this also influenced by the surgeon's skill and experience with the particular technique. An individual surgeon's success rate also depends on the ratio of low risk and high risk patients he or she takes.

The percentages vary drastically depending upon the specific studies you read and how healthy the group was:
A " successful result " or complete cessation of symptoms gets percentages from the mid 50's to upper 80's with most studies reporting numbers in the higher part of this range.
A" good result " or a substantial improvement in symptoms is reported at about 10-20% of the time.
A " poor result" is variously defined as "minimal or no improvement in symptoms," "worsening of symptoms," "occurrence of new symptoms," or "disruption of the wrap." This gets from 0-15% overall but special populations have high much rates of poor results.
The re-do rate is 0-15% for disruption of the wrap.

Keep in mind that a child with multiple illnesses that contracts pneumonia twice in the follow period may negatively affect the statistics yet that child may have had more cases of pneumonia or died without surgery.

None of these address parents' most burning questions because very few studies compare surgery to medical management. The effectiveness of medications is not as good as we would wish, and some new studies of long-term results are depressing. The likelihood of a good outcome for your child is something to discuss with your child's doctors.

What are the Complications of Anti-Reflux Surgery?

Every case varies, but aside from the usual surgical risks of anesthesia, infection and accidental damage to the tissues, some complications may include:

Small bowel obstruction - scar tissue adhesions form in the abdominal cavity as a result of many surgeries. For some reason adhesions are more common after any anti-reflux procedure and if they block the passage of food through the intestines it can require emergency surgery. The "typical" symptom of an obstruction, vomiting, may not happen after a fundoplication so patients and families need to know what else to watch for. Any signs of an obstruction need to be investigated immediately. Adhesions glue parts of the body together that are supposed to be separated and can be responsible for pain that is perceived in the left shoulder and other odd sensations.

Disruption of fundoplication - the stitches come undone and the stomach returns to previous position. Most reports in the literature involve falls and other accidents. Some parents report that a good case of the stomach flu or food poisoning will cause retching violent enough to pop the wrap.

Hiatus Hernia - the junction of the esophagus and stomach slides through the diaphragm into the chest cavity. Lately, more care is being taken to anchor everything securely and minimize the size of the opening in the diaphragm separating the abdominal cavity from the chest.

Stricture - scarring and narrowing of esophagus. Most often this is a recurrence of a scar present before surgery. Even stopping acid exposure totally doesn't always prevent a recurrence.

Obstruction at fundoplication - esophageal motility is present but the food can't pass into the stomach

Delayed gastric emptying - the stomach may be slower than before at sending food to the intestines or a delay that was not a big issue before can be come a real problem. Pyloroplasty promotes faster emptying.

Dumping syndrome - rapid emptying of the stomach causes symptoms including severe nausea, abdominal cramping, retching, pale skin, and sweating. Diet changes may help. Routine pyloroplasty is not favored because dumping may occur.

Failure to eat solid meals - liquids and foods are introduced slowly after the surgery. Certain foods may not be tolerated. A naso-gastric tube may be placed to enable a slow drip of formula into the stomach or IV nutrition may be used. Both fear of choking and current pain may be problems .

Gas bloat - inability to belch means gas must travel the length of the intestines.

Retching - "dry heaves." One parent described as "watching an invisible bully punch your kid in the stomach - repeatedly."

Dysphagia - esophageal motility is diminished and swallowing is affected. Great care is taken when working near the nerves that control swallowing. Low motility and a new wrap means food gets stuck in the esophagus. This had been more commonly reported with laparoscopic procedures and techniques are being modified accordingly.

Tube feeding dependence - if children are fed by tube after surgery, it can be difficult to convince them to resume eating. (See letter from Mary Gillman below.)

Ask The Doctors - interviews with two doctors

Kathryn Anderson M.D., Chief of Pediatric Surgery, Children's Hospital Los Angeles, CA (CHLA)

Q - As a pediatric surgeon, what indications or criteria must a child meet before discussing a fundoplication surgery for GERD?

Before considering gastric fundoplication, a child must have clinical evidence of GER which may include one or more of the following: vomiting, malnutrition, failure to thrive, developmental delay, esophagitis, esophageal stricture, pulmonary complications such as aspiration pneumonia, asthma, restrictive airway disease, chronic cough and apnea.

Reflux is associated with a variety of neurological diseases. Children who have cerebral palsy, Downs syndrome/chromosomal anomalies, hydrocephalus or severe head injury should be suspect for GER although they may not exhibit the common clinical signs or symptoms. These children may ruminate or have a history of vomiting with bizarre neck and torso spasm referred to as Sandifer's syndrome.

When GER is suspect, one or more of the following studies may be ordered to confirm diagnosis: Esophagram with gastrointestinal follow-through ("Upper-GI"). This is most common of radiologic studies to evaluate for reflux. It will also identify other anatomic problems which may cause vomiting. The study has its limitations as it only identifies GER occurring at the time of the study.

Gastroesophageal scintiscan. This is a highly sensitive radiologic study which will identify GER as well as measure gastric emptying time.

24-Hour pH monitoring. This study may be ordered in difficult diagnostic situations. A pH probe is placed in the distal esophagus via the nose where it
remains for 24 hours measuring the number and severity of acid/alkali reflux.

Esophagoscopy. If a child is still suspect for GER despite negative results, an esophagoscopy with biopsy can identify the presence of esophagitis secondary to reflux as well as complications such as esophageal stricture.

It is important that the above tests be done by a qualified individual with pediatric experience for accurate evaluation.

Treatment is dependent on the age of the child and the severity of symptoms. Infants often have reflux which resolves by 6-8 months of age. Unless GER is severe, medical therapy should be attempted prior to surgical corrections. This may include smaller feeds given more frequently, thickened feeds and keeping infants in a prone upright position to minimize reflux and promote gastric emptying. Infants and children may be started on medications which increase the pressure of the distal esophageal sphincter and promote emptying of the stomach if dietary measures fail.

If, despite medical management, the child still has evidence of reflux, then surgical correction of the problem is appropriate.

Q- Could you briefly describe what fundoplication surgery is, the average hospital stay, and the average recovery time?

Fundoplication, simply described, is a surgery which mobilizes the gastroesophageal junction below the diaphragm to increase the length of the intra-abdominal esophagus. The upper portion of the stomach (fundus) is wrapped around the esophagus to create a valve-like mechanism which prevents the reflux of stomach contents back into the esophagus. The stomach may be wrapped completely or partially around the esophagus in varying degrees. The different degrees and orientation of the wraps are referred to by separate names.

The average hospital stay following a fundoplication is 4-5 days, and is dependent on the child's ability to return to full feeds either by mouth or gastronomy tube if one has been placed. The child should be essentially recovered in approximately 2 weeks.

Q - What are the most common complications post-operatively?

Complications which may occur vary in severity. They may include:

  • Inability to begin or advance feeds orally or by gastronomy tube due to a delay in intestinal function following surgery. This may present as abdominal distension.
  • Inability to begin oral feeds due to post- operative swelling at the surgical site. Food will pool in the esophagus and not pass into the stomach causing the child to gag and vomit. This situation usually resolves within a few weeks.
  • Inability to tolerate full feeds as the gastric capacity is temporarily reduced after surgery.
  • Retching.
  • Slip of the wrap above the diaphragm.
  • Disruption of the wrap.

Q - What are the names of the various types of fundoplications you and your surgical staff perform at CHLA?

Nissen and Toupet fundoplication.

Q -Do you prefer of perform a specific type of fundoplication? Why?

The gold standard for any type of fundoplication is the Nissen wrap. This is because there has been the greatest experience in this procedure. It is a relatively simple procedure, its complications are known, and there has been a long medical follow up. Any other type of procedure must be measured against the Nissen wrap. I perform a modification of the Nissen called Toupet fundoplication when I can but I do not have a long term experience with this and again, the gold standard is Nissen.

Q - Who should decide which type of fundoplication if performed?

The surgeon is the one to decide which type of fundoplication is performed which is based on his/her expertise, experience and preference.

Q - Many parents ask, "Will this be the only surgery my child will need, and will the problem be fixed after surgery?" Could you please comment on this?

As with all surgical procedures, there are no guarantees of outcome. The child may be completely relieved of signs and symptoms, which is our goal, or have any of the complications listed above at any given time. The children may do very well for an extended period of time and then present with a "slip" or disruption of the wrap. The potential complications of surgery must be weighed against complications which will occur if a fundoplication is not done.

Q - Laparoscopic Fundoplications seem to be a hot topic, what are your comments?

Laparoscopic fundoplication is increasingly being performed in both children and adults. Again it is a new procedure and the long term results are completely unknown. It must be measured against the known standard of the open Nissen fundoplication.

Q - In your opinion, what should a parent/family look for or require of their pediatric surgeon?

Pediatric surgeons should be experienced in surgery for the gastroesophageal reflux and should have an interest in this condition. Since this is such a common operation, most periodic surgeons have considerable experience with it during their training and beyond. Pediatric Surgery is a defined specialty which requires two years of training beyond completed training in general surgery. There is a certificate of special competence in Pediatric Surgery which is an examination by the American Board of Surgery and eligibility for this follows completion of the American Board of Surgery Certificate in General Surgery. These are the formal requirements for a pediatric surgeon and you should make sure that you surgeon has these qualifications.

Q - Do you feel it is important for the parents to ask their surgeon for his/her success and failure percentages in whatever type of fundoplication surgery they consistently perform?

This is a difficult question to answer because there are a lot of rare procedures in Pediatric Surgery (GER surgery is not one of them). In these cases the training and the qualification to take care of children and the technical ability of the surgeon is far more important than the actual number of a particular type of procedure that has been performed. You can only measure success and failure percentages when the surgeon has done hundreds and hundreds of these cases. Most good surgeons have essentially the same success and failure rate so an individual question about surgeons success and failure rate is not really very relevant.

Q - How do parents go about getting an reliable referral for a pediatric surgeon?

Pediatricians usually know who the good pediatric surgeons are and in general , you should follow the advice of you pediatrician. However you need a certain comfort level with the person who is going to operate on your child and for any reason at all you are not comfortable with that individual, then you should seek another consultation. You are required to put a great deal of trust into someone who is operating on you child and it is difficult to do so if you do not trust them instinctively, if you don't like them, or if they do not spend the time explaining the procedure to you in language which you understand or if they do not answer you questions. This is over and above the answer to the qualifications above.

Dr. Benny Kerzner, Chief of Gastroenterology and Nutrition, Children's Hospital National Medical Center, Washington, DC (CHNMC)

Q - As a pediatric gastroenterologist, what indications or criteria must a child meet before you would suggest a fundoplication for a child with GERD?

The indication for surgical management of gastroesophageal reflux disease (GERD) is a failure of medical treatment. The treatment failure might be obvious but frequently it is a judgement call. One balances many factors:
  • the likelihood of spontaneous resolution of the symptoms (as occurs in children under two);
  • the potential for long term surgical failure (as is more common in neurologically damaged children);
  • the extent to which reflux is compromising health (protection of lungs is a paramount consideration); and
  • to what extent lifestyle will be disturbed by needing to avoid surgery (e.g. the need for continuous formula feeding).

Q - What can parents do to assure that surgery is appropriate?

The parents' role in this decision is critical - not only in assuring that the child receives all of his or her medical therapy but also in helping the medical team gain the true perspective of the gravity of their child's symptoms.

Q - In your opinion, are there any tests or procedures that should be required before proceeding with a fundoplication surgery?

Before a fundoplication, a barium contrast study to evaluate anatomy is needed. Additional tests ordered depend on the circumstances of the patient and are not mandatory. To appraise the anatomy and pathological changes in the esophagus, the best test is an endoscopic examination. To evaluate gastric emptying, a scintiscan (milk scan) is done. When reflux is not the obvious explanation for symptoms or we wish to evaluate the success of medical treatment, pH metering of the esophagus is used. In principle, however, we aim to do the least amount possible to confidently arrive at a conclusion regarding the need for the anti-reflux procedure. This may be a Nissen fundoplication with or without further surgery to drain the stomach or place a gastrostomy tube.

Q - Do you feel that it would be valuable for the family to get a second GI or Surgical opinion before proceeding with the fundoplication surgery?

Electing to do surgery is always a challenging decision, but the need for a second opinion is by no means universal. I suggest a second opinion when the choices are difficult and when the parents and/or doctors are not confident in the decision reached. On many occasions, failed medical treatment is obvious to all and a second opinion does not seem necessary.

Q - Could you suggest a few basic questions that would be important for parents to ask their gastroenterologist regarding fundoplication surgery?

Parents must ask questions which help them clearly understand that medical options are exhausted. For example, has the optimum dose of the medications been used? Are there alternatives? They should know the success and complication rate of the surgery. They should not only inquire about the depth of experience of the surgical team, including the anesthesiologist, but also about the nursing support available for device (tube) management when applicable.

Q - Laparoscopic fundoplication seems to be a hot topic. What are your comments?

I favor laparoscopic fundoplication, and I believe it is here to stay because the short term post-operative course is so markedly improved. However, laparoscopic techniques differ and portions of the traditional Nissen fundoplication may or may not be done, i.e. mobilizing the stomach and fixing the diaphragm. Patients need to understand these differences and discuss them with their surgeons.

Q - How do parents go about getting a reliable referral to a pediatric gastroenterologist?

The management of GER is fundamental to pediatric GI, and all board certified pediatric GI doctors will have received extensive training in this area. Parents should work with a pediatric GI specialist who relates well to their primary care physician and with whom they can have a frank, two-way conversation. I believe parents should primarily be guided by their primary medical doctors.

Q - What post-operative complications from a fundoplication do you see most commonly in your practice?

The most common post-op complication is gagging, but food rejection and swallowing difficulties are also seen. If these symptoms persist or if they begin weeks or months after surgery, particularly if accompanied by vomiting, disruption of the surgery has probably taken place. Occasionally, diarrhea due to very rapid emptying of the stomach, known as "dumping syndrome," is seen.

Members Write About Surgery

We invited our members to share their experiences with surgery. Human nature being what it is, almost all submissions were about problems with surgery. Members who had good experiences were not motivated to write. Our group also has a disproportionate number of members who have had a really tough time with GER. (Since we don't advertise, these are the parents who are motivated enough to find us.)

These parents and patients didn't write just so they could whine or alarm you. They wrote because they want others to be able to learn from their experiences. Keep this in mind as you read their stories. Try to concentrate less on the details of what went wrong and focus more on the appalling difficulty of deciding what is the least harmful option for your child, at this moment. It is totally irrelevant whether any of us would have made the same decision. Only a patient and their family can decide what is best for them.

Nine Months Later.. Still Waiting for Answers....
Adam was a 26 Week preemie and spent four months in the Neonatal Intensive Care Unit (NICU). He had a lot of different issues including a brain hemorrhage, apnea, bradycardia, infections and the works. When they started feeding him they thought they saw some signs of reflux but fairly minor and by the time he left the NICU they had taken him off all his medicines. He came home and was home for less than a week when they decided to put him back on his Zantac and Cisapride. They tended not to work for him.

Adam had been home for a little over a month and he developed hydrocephalus. They put a shunt in and at the same time the throwing up got worse and he stopped gaining. He came home after the shunt surgery and was home for about three or four days and was throwing up so badly that he became dehydrated. They admitted him to Fairfax Hospital and was there for a week. He went home with an ng-tube (naso-gastric) to supplement his feedings during the day and to allow night time feeding. He stayed out of the hospital for about a week and ended up back in because, again, he was dehydrated. This time they put in a nd-tube (naso-duodenal?) which goes through the nose into the intestines. That was a lot of fun because he would pull it out regularly - like several times a week and we would have to go back to Fairfax and they would have to put it back in with the x-rays and the whole business.

Finally, in October, Adam completely stopped taking a bottle and we were feeding him with the ng-tube again (the nd-tube didn't seem to make and difference and we could put the ng-tube back in ourselves.) We went around and around about whether or not to do the Nissen. We finally saw Dr. Lake up at Hopkins who convinced us that even though we were getting nutrition into Adam, he was still in pain, he wasn't eating, and he would not learn to eat until he stopped having pain. Right after Christmas we had the Nissen done and a g-tube (gastrostomy port in the abdominal wall) placed.

Adam started off great when he came home after the fundo. They felt he would probably never take a bottle, but we were at least getting some solids into him. He was up to taking almost six ounces of solid food and then he started with dry heaves and retching like he was trying to throw up and couldn't . This was pretty consist at all of his feedings. He took five or six ounces of formula in his tube every four hours during the day plus night time continuous feeds.
Again, we went around and around. Everybody kept telling us that the retching was something we were going to have to live with. We finally went to Children's and saw Dr. Kerzner. He said, "No the retching is not something you just need to live with." They drastically reduced the amount of fluids Adam was getting during the day and he stopped retching. I just want to tell other parents not to listen when they are told that retching and dry heaves is something you will just have to live with. I think that there are ways to get around it.

I strongly recommend getting in touch with a nutritionist now if you are talking about fundoplication or a g-tube in the future. We are working with a nutritionist at Children's in DC.

Unfortunately, Adam has continued to go downhill. He is losing weight. He is not eating any solids at all. He might take a sip of water here and there. He tends to retch in the morning when he wakes up after being on a continuous feed. We are considering taking him up to Hopkins to the feeding and swallowing clinic. I'll let you know.

Adam is sixteen months old now, and I think that we are dealing with a couple of issues. He wants to feed himself, but he has been abnormally fed for so long that he has no idea how to chew and swallow. He might take a bite of cracker, but then chokes and gags and turns all kinds of wonderful colors. Food just sits in his mouth. I'm sure that comes from the fact that he stopped sucking in October. Too eat and chew and swallow obviously you have to start with sucking, so it makes sense. We are also dealing with the issue that he doesn't understand that eating will get rid of hunger. I think we have go him to the point that he is hungry - he takes three ounces of high calorie formula around lunch time and nothing until dinner in the hopes that he will be hungry. I think it works but he doesn't have a clue what to do about it and I can't get enough solids in him for him to learn that it will get rid of the sensations.

That is where we are now. We feel like we really have a long way to go still because he is not really taking anything orally. We are looking for some help and some ideas. Dr. Lake says he only sees about a half dozen kids a year that will not eat at all and Dr. Duffy concurs. I'm hoping that there are some people in our group who have gone through an extreme situation like this. Most people just say, "Well, they'll eat before they go to college." But that doesn't help me a whole lot right now.

Adam cannot and does not throw up so the Nissen is working, but it has left other problems. Please have parents call me if they have been through this.

Name withheld on the web site.

The Question Mark Kid
Over the teeth and through the gums. Look out stomach, here it comes!! Hello, my name is Lauren and I am 9 3/4 years old. I'm going to write about my feelings on fundoplication surgery and my doctors.
I've had two fundoplication surgeries. When my parents and doctors explained to me why and how I had to have surgery, I was a little scared a frustrated. Then, like always my parents and I talked, and we realized that this was the best thing for my health.

Before the second surgery, when I went into the operating room and laid on the table, my mind was full of thoughts. "How was I going to feel after the surgery and what was going to happen to me? I saw Dr. Anderson smiling at me and all the other doctors and nurses were smiling, too. I began to feel more comfortable and relaxed. When I woke up after surgery, I was in very groggy and in a lot of pain. In a soft voice I told the nurse I was in pain and she comforted me with kind works and gave me some medicine.

Recovery wasn't as easy as I thought, and it was difficult to eat. It was almost four months before I could eat solid foods. I love to eat (but I'm not a pig!), and I missed eating a lot.

A year after my second surgery, I still have some problems related to [from?] the surgery, but my reflux and lungs are in better shape that before.

To conclude my short story, I would like to share my feelings about my doctors with you. My doctors have a very special place in my heart. They've always told me what's going to happen and what tests I need. I never left the hospital with all the questions answered, but they tried their very best to answer what they could. Once I told my Mom and Dad that my reflux and I were they question mark at the end of the sentence. I want to thank them for being such wonderful friends and especially, wonderful doctors. I respect and admire their confidence and warm hearts for me.

Lastly, if it weren't for my family's love and our faith in the Lord, I can't think of any way I could have gone through this. I've had a wonderful summer going to the beach and playing with my friends. When I feel sick, I take a rest, and then I'm ready for fun again!


Reflux Surgery- One Man's Story
When my doctor told me I should consider surgery to correct my reflux, I was almost relieved. I was only 38 years old, and didn't want to consider the possibility of taking medicines for the rest of my life. Although I never had surgery before, after twenty years in the military, I was certainly not averse to pain. My GI specialist said the procedure, called Nissen fundoplication, could be performed laparoscopically, minimizing recovery time. In short, I saw no down side to this option. The surgeon asked me why I thought surgery was a good idea for me. "What is this, a test?" I wondered. "Aren't you supposed to know why this is a good idea?" I told him that Reglan made me feel psychotic and that, in my opinion, it was the most dangerous drug in the world- perhaps the subject of another article- and that the other reflux controlling drugs had not been tested for their long term effects. This left me with surgery as my only option. He agreed that surgery seemed to be indicated in my case, told me that the laparoscopic procedure was relatively painless, and that I would probably be home the day after surgery. I agreed to go for it, and signed the papers.

As the surgeon promised, the surgery itself was relatively painless. The laparoscopic technique worked well, and although I was told I might need a morphine drip to control the post-operative pain, this proved not to be the case. What residual pain I had from this procedure was easily controlled by the Percocet and Demerol. In fact, I was overjoyed at how easy the procedure was.

This joy lasted for about a day, until the first time I was asked to swallow. It turned out that when I swallowed liquids, I experienced a sharp, penetrating pain below my sternum that lasted for a few seconds. It was intense, but bearable. But when I was asked to try to swallow food, things changed for the worse. My first food, Jell-O, caused pain of such intensity that the nurses and residents attending me grew concerned. I knew something was wrong when they brought in the crash cart and started administering Nitro. This was, for me, a harbinger of things to come. They thought I was having a heart attack, but as it turned out my diaphragm had gone into spasm, causing an intense hiccup fit. As far as pain goes, this was about the worst thing I could imagine. Although the spasm was clearly less serious than a heart attack, I couldn't imagine that it was any less painful in my current condition. I had now experienced how my newly formed gastro-esophageal sphincter muscle would react to the stress of having food sent through it. This reactive pain was far more serious and severe than that caused by the surgery itself. And worse of all, there was nothing anyone could do about it- unless I was willing to have them reverse the surgery.

It was decided that I would be better off if I didn't eat for a while. So I was kept in the hospital on an IV. After about a week with nothing by mouth, the hospital staff decided that I couldn't stay like this forever, that I would just have to gut it out, so they sent me home. But my dismissal was not long-lived. That same night, I had another incident where the spasms were so intense that my wife had to take me back to the ER. Again, I went through the same routine- crash cart, Nitro, and so on. Of course, I knew it wasn't a heart attack, but the pain was just as real. This time, I had a piece of food stuck in my esophagus (the first thing I ate after I went home). This resulted in an emergency endoscopy at midnight to remove the errant food, and several more days in the hospital.

I have always been a motivated, can-do guy, but now I was wondering if life like this was worth living. The spasms and hiccups repeated themselves for the next several months almost every time I ate- it was agonizing, grueling pain. I went into a deep depression- something I had never before experienced in my life.

Eventually, I learned that it was easier to cope with the condition if I simply cut back severely on my eating. I decided I would rather not eat than go through this pain. I consumed about 800 calories a day (about two cans of SlimFast.) I quickly lost 25 pounds, dropping from 165 to 140. I would have dropped even further, were it not for my relative inactivity and the steady stream of Percocet I relied on for months after the surgery to control the pain of eating. With time, the pain did subside. But all this lasted for more than six months. It's been over a year now, and although for the most part the pain is gone, I still suffer from dysphagia (difficulty swallowing).

The thing that really bothered me about this incident is nobody ever told me how painful it would be to eat as a result of the surgery. Pre-operatively, I was told all the usual stuff about possible reactions to the anesthetic, possible infections, accidental incisions causing bleeding- you know, the usual stuff they always tell you before surgery. But apart from an obscure reference to "a possible temporary condition where you might have difficulty swallowing," nothing was presented to me about this possibility.

Is everybody's experience with the Nissen procedure like mine? To tell you the truth, I have no idea- I haven't done much research on it. Perhaps I'm an exception. But then again, I don't care. If one in ten cases were like me, I wouldn't take the chance. Would I put a child of mine through this? No way, not unless his life depended on it. There are circumstances where GERD is this serious, but mine wasn't one of them. In any case, my story is something you should consider before you make a decision about what is right for your family.

Name withheld on the web site.

Fundoplication Saved Our Daughter's Life
Our daughter, Emily, was born with a mild case of reflux but a serious heart defect. Inefficient blood circulation meant that she needed lots of calories to pump blood faster and keep her body oxygenated. She had been on oral feedings that were supplemented with a nasa-gastric tube after a few weeks, but she was labeled "failure-to-thrive." The medical team wanted to place a g-tube so that she would get more nourishment and they wanted to do a fundoplication at the same time because it would aggravate the reflux that had not been a problem up to then.

We understood the need for a g-tube but we were not happy about the fundoplication. Doing such a permanent surgery that had a long recovery time and would leave her permanently unable to vomit or burp seemed like overkill for the situation. We worried about what would happen if she got the stomach flu. We had seen children in the hospital who got so used to being fed by g-tubes that they would lift their shirts as they announced that they were hungry. The thought of never having her eat normally made us cringe.

After procrastinating for a long time, we were still not ready to say yes. Finally, the department head sat us down for the "bad cop" routine. He had to be very blunt to convince us that our daughter would never get strong enough for the series of cardiac repairs that she needed if she was to live past her first birthday. We resented being made to face the fact that there was no choice. No parent should ever have to face a decision like this but we finally saw the gravity of the situation. Procrastination was no longer an option.

When Emily was three months old, she had a g-tube placed and a Nissen fundoplication. Another baby with some of the same problems got a g-tube the same day.

I can't say the recovery was swift or easy. For six weeks, poor Em screamed when we gave her even tiny amounts of formula. She gagged and retched and we cried with her. From the beginning we were very careful to give her tiny amounts of formula by mouth so that she would not forget how to eat. An occupational therapist showed us how to stimulate Emily's mouth and we found it helped to dip her pacifier in anything that tasted good - rootbeer was her favorite. As the stomach and incision site healed, she became able to handle the feedings and she no longer relied heavily on the night time drip for most of her calories.

Meanwhile, the other baby threw up most of what went into the g-tube. This subsided after a while but he still had his g-tube and significant reflux a few years later.

In only a few weeks Emily started gaining weight. She was downright plump when she started the heart repairs three months later. We weaned Emily from tube feedings at eight months but the doctors were so surprised at our success that they insisted on keeping the tube in until she was a year old.

The Nissen got her through successful heart repairs and is still holding even though it isn't necessary anymore. Combined they gave us a miracle: a happy, bright ten year old who can keep up with her friends in most activities - except belching contests.

Name withheld on the web site.

Summary from Caroline
In conclusion, it goes without saying that the decision to have surgery for your child is very difficult. However, when GER persists and presents life-threading complications, the benefits of fundoplication may outweigh the risks. there are times when the surgery is necessary and appropriate. It is not a guaranteed cure, nor should it be done just to avoid the hassles of lifestyle changes and medicines. Fundoplication is major surgery.

The information we have compiled seems very negative but one journal article reported quite positive results on a patient satisfaction survey. Of 38 patients (adults) who had traditional (open) fundoplication, 36 reported that they were "satisfied" during a phone survey and 34 "would have the surgery again under similar circumstances." For the 32 laparoscopic patients, 27 were "satisfied" and 29 would do it again. Peters, et al, "Clinical and Physiological Comparison of Laparoscopic and Open Nissen Fundoplication," Journal of the American College of Surgeons, vol 180, pp 385-93, April 1995.

I do have to add a personal view regarding this decision making process. One must have an outstanding rapport and relationship with your pediatrician, G.I., surgeon, and other specialists you may see. These physicians should be advocates for your child and communication and trust is invaluable to your child and family. Thank you Dr. Page, Dr. Self, Dr. Anderson, Dr. Agram, Child Counselor Susan Miller, and all the other wonderful caregivers involved with our family.

I think it is important to close with a positive thought about surgery itself. When all other avenues have been exhausted without a positive response, surgery can be a viable tool to provide a better quality of life and prevent life-threatening symptoms.

I hope we didn't scare you, especially new members. Most parents of children with GER never have to face this decision but is on the minds of many of our members.

Here's hoping you never need this information,
Caroline McGraw
Check with your
doctor first!