In the past, every child getting a G tube also received an anti-reflux surgery called a Nissen fundoplication,
in which the top of the stomach is wrapped around itself to prevent reflux. Recent research has shown this is
neither necessary or advisable. Each child should be evaluated individually, and a Nissen fundoplication
should only be performed when there are significant respiratory issues, severe damage from reflux, or other
significant reflux-related issues.
Pros of the Nissen fundoplication:
- No vomiting from reflux, which can lead to better weight gain
- Increased quality of life for you and your Tubie
- Often can be done laproscopically
Cons of the Nissen fundoplication
- When your Tubie needs to throw up, he may retch, which is uncomfortable
- The Nissen can slip, which can be dangerous and requires additional surgery
- The Nissen can loosen and may need to be redone through additional surgery
- Some Tubies vomit through them or continue to have reflux even after the procedure
- Some have bloating problems where they need a lot of venting of the G tube.
- Some Tubies get dumping syndrome as a result, especially if they also have a pyloroplasty
- Some surgeons will not perform these laproscopically
Some GIs and Surgeons are very pro-Nissen and will only do G tubes in conjunction with them. However, others are on the opposite camp and will only perform them under very specific circumstances. As a parent considering a Nissen Fundoplication, you should know that it isn't a requirement to get one when getting a G tube. That being said, reflux can often develop after the G tube surgery, which is why many surgeons suggest them proactively.
The decision to get a Nissen Fundoplication is a big one. It is another surgical procedure and one that may have complications down the line, such as dumping syndrome, hiatal hernia, and even nerve damage. Be sure to ask your Tubie’s doctor for details on potential complications and risk factors to help you make an informed decision.
First, it is important to note that children with delayed gastric emptying/gastroparesis should not get Nissens. It turns the stomach into a little pressure cooker. The GJ tube would be a better alternative to consider. Children with neurological issues also tend to do much worse with Nissens, so these children should only receive a Nissen when the benefit clearly outweighs the risks.
Tubies who are aspirating secondarily (meaning they are aspirating their reflux) seem to be the best candidates for the Nissen. These children have likely had aspiration pneumonia, or are having breathing difficulties because of aspiration, or are turning blue.
There are different types of Nissen Fundoplications, including a complete wrap and a partial wrap. You should consult with a medical professional to better understand which they are recommending for your child and why.
For more information, see the following articles from Complex Child:
Nissen Fundoplication Stories
Harmony's parents are glad they did had the Nissen done, but not without exhausting all other options.
Harmony’s story is a huge case of “hindsight is 20/20.” We didn’t know why any of this was happening at the time, but I’ll tell her story as I know it now, with the details filled in for you that I had to find out later.
Harmony was born with a severe brain injury due to hypoxia in utero. Almost all her diagnoses and troubles are secondary to that. She has extremely low tone and laryngomalacia, both which mean she has severe GERD. She also was tongue-tied and is thought to have a slight sub-mucosal soft cleft palate. She had no gag reflex at first, and couldn’t suck or swallow. She was intubated at 1 day because she would stop breathing if she was not positioned properly. During that time she was on TPN, then had an NG. Post-extubation, she had an ND because of the reflux concern, but she struggled so much with bile refluxing into her stomach and out her mouth that we pushed for the NG. She was on compounded Prevacid once a day at that point. With the NG, she was still struggling with breathing, which we managed by suctioning and repositioning. The entire time she was in the NICU, the breathing troubles were blamed on her brain injury. They suggested a trach, but we declined. Her bed was elevated, but she would still have food coming out her mouth. She would choke and scream and stop breathing. The uncontrolled acid (from the insufficient acid control meds) was causing her larynx to spasm and get stuck closed. No one in the NICU realized this at the time, and we didn’t have any idea of where to go for answers.
Harmony was not showing any signs of improvement in sucking or swallowing, and already had a horrible oral aversion from the tubes and suctioning. The only thing keeping us in the NICU was her inability to eat orally, so we agreed to a G button so we could go home. The consulting surgeon discussed the procedure with us, and brought up the idea of Nissen Fundoplication. We were very opposed to the idea of the fundo, even though we really didn’t know much about it. But the surgeon agreed since her upper GI did not show much reflux, and he felt that it was better to try to avoid it if we could. He agreed that fundos can have their own complications, especially doing one in a baby so young. He told us that babies who get fundos at less than a year old often have to have them redone. Our own surgeon said to keep her away from surgeons for a year. So Harmony had her G button placed when she was 3 weeks old. They did the surgery laproscopically, attached her stomach to her abdominal wall with 4 stitches, and placed a Mic-Key balloon button (we have since switched to a Mini). We were discharged from the NICU when she was 5 ½ weeks old.
When we got home, Harmony was still very fragile. She was on 24/7 oximetry, using that as an apnea monitor for when she would get “stuck” (stop breathing). She would pass out and turn blue, and we’d have to suction her and reposition her to help her breathe again. We had home nursing during the day so we could work, then we would sleep in shifts at night, 4 hours each. I was dealing with my post-partum hormonal mess, I stopped trying to pump and we switched to formula, and we were just a wreck. She would just scream and choke and only wanted to be up on someone’s shoulder. Then she started throwing up all the time. We scheduled an appointment with the ENT she saw in the NICU, desperate for answers. He was really in favor of a fundo, and was sure she was going to aspirate based on the one very poorly done swallow study she had done. He consulted with her surgeon, a surgery date was set, and we went and had another upper GI. We were still really opposed to the fundo, but didn’t know what else to do. In the midst of all of this, I started learning from other moms about reflux. I read posts by other moms describing exactly what Harmony was going through.
I went to her Pediatrician and demanded Prevacid solutabs in higher doses, and requested a referral to a pediatric GI. We learned we were over-feeding her, that the pediatrician’s standard feeding calculations did not apply to her. We cancelled the surgery, and wanted to give the new meds and new feeding plan a chance. I felt justified that we had fought the fundo this whole time, as I can’t imagine how uncomfortable she would have been had she not been able to throw up all the extra food we were dumping into her. After about a month, the screaming slowed down, and she was clearly not in pain all the time anymore.
At 5 months old, we were at a point of having good acid control, and feeding Harmony more reasonable amounts of food for her needs. And yet, she would still reflux a lot, sometimes vomit, and she would cry and choke. When I say reflux, I mean that food would just run out of her mouth. She was completely NPO, and you would put something in her button, and it would free-flow up and out her mouth. Her bed and changing table were elevated, we kept her upright during and after feeds. We changed from a bucket infant carrier to a convertible carseat because it was more upright. Her “bolus” feeds lasted an hour and a half every three hours, and still the food would still not stay in her stomach. But also during this time, she developed infantile spasms, and everything took a back burner to dealing with her seizures. We just “managed” the reflux. We carried cloth diapers everywhere to catch what would come out. We carried her portable suction machine everywhere. But mostly, we tried not to go anywhere. She would still scream in the carseat, and choke and cough and need suctioning all the time. She could not lay on the floor to play. We could not change her diaper away from home, because we could not lay her flat on a regular changing table.
At around 10 months, we started bringing up the idea of the fundo ourselves. We were at the end of our ropes with “managing,” and hated that Harmony was constantly uncomfortable. Constantly choking. Constantly tasting Neocate stomach acid (which is horrible, I know first hand). Our entire family was miserable and slaves to her reflux, but we wanted to hold out until she was 1 like the surgeon originally recommended.
A few weeks later, Harmony’s button site started to look red, and we were concerned she was getting granulation tissue. We made an appointment at the surgeon’s office to have him take a look. While there, we tossed around the idea of the fundo, and asked a bunch of questions. Does he do the fundo tight or loose? Does he do it laproscopically? Will he have to move her button? How long will she be in the hospital? What is recovery like? If you were in our shoes, what would you do? He asked us some questions too. Though Harmony has never had aspiration pneumonia, how was our family’s quality of life? How is her quality of life? What are the limitations this has placed on us, and how do we think a fundo might help improve all of that? He said he thought we had done a good job of trying to manage this in every other way (meds, lifestyle, etc.) and he agreed that we were at the point where it made sense to talk about a surgical option. It felt so good to have someone acknowledge that we appropriately tried hard to avoid a surgical procedure, but it felt like (in a positive way) that he gave us permission to think that it was the right move now. Because he was the one who opted not to in the first place, we were confident that if he suggested it was the right thing now, that it really was. Harmony had her fundo two weeks later, right at 11 months old.
Now you might think I’m about to say, “And we all lived happily ever after.” I’m not, and I’ll get to how she’s doing now, but I do not regret for one second how any of this played out. First, I’m glad we waited. I’m glad we didn’t second guess our choice to do the fundo, as we really did try everything else first. I’m glad we got her intake volume under control before, because I would be concerned that she would have given herself a hiatal hernia, or her fundo could have slipped from the constant vomiting. I’m glad we were able to wait until she was almost 1, to lessen the chances her fundo will have to be redone. The surgery went so smoothly, it was laproscopic and they didn’t have to move her button, so recovery was quick.
Post-surgery, the resident had a feeding plan in mind, which sounded really fast to us. We fought him so we could increase her feedings and the rate very slowly. By following our plan, Harmony had no retching, and she was discharged in two days. Within a few days, we had her eating over 30 minutes. It was miraculous. No food would come up. She could lay flat. She wasn’t screaming or choking. Then, about a week later, reality hit when she had yet another upper respiratory infection (this was a constant for her), and ended up on Augmentin, which upsets her stomach. On day 2, she retched, and it was scary. She turned purple, and made this scary high pitched noise. On day 3, she did that again, and a little food came out. On day 4, she threw up. Now we knew this could happen, since our surgeon opts to do fundos a little on the looser side, to lessen negative side effects. But the honeymoon was clearly over.
Now, months later, Harmony can totally throw up if she needs to (her gag reflex kicked in with a vengeance this last year), and maybe a bit easier than I’d hoped. But she can also totally lay flat on the floor and play. We no longer have an oximeter, and only take suction with us on long trips “just in case.” We really just use it twice a day as a preventative measure, and to suck out toothpaste after we brush her teeth. We can change her diaper in public facilities now. She can ride in the car without screaming, and we don’t have to plan appointments around when she eats. She will still reflux sometimes, and in her attempts to swallow it back down, she gulps air since her swallow is still terribly dysfunctional, and we have to vent her like crazy to keep her comfortable. Once the air is out, she’s fine (she hasn’t figured out how to burp without throwing up). She is still able to eat over 30 minutes, and can often lay on the floor to play while eating. Harmony’s quality of life has improved greatly, as has ours. For us, it was the right move, and it was worth it.
Connor's mom was told that the Nissen was a routine procedure associated with G tube placement and it turned out to be anything but.
My son Connor was born on Valentines Day, 2010 with multiple congenital heart defects. He was immediately taken to Children's Hospital where he was stabilized with catheterizations. Despite the fact his heart was holding its own, he failed to be extubated. He ended up needing a trach and being on bipap. Because of the heart and lung issues, the doctors decided he needed a G tube before he ever got the chance to try oral feeds.
Hours before he was due to be taken into surgery for the G tube, the doctors came to his room to get consent. They also told me they'd be doing a Nissen. When I asked what that was, they told me it was a routine procedure done whenever a child got a feeding tube. That it wasn't a big deal and it would just keep him from aspirating. I had no time to research it myself and so I signed the consent.
Unfortunately, in my son's case, it did turn out to be a big deal. Within a couple weeks of being allowed to try eating by mouth, Connor was taking all of his feeds orally. However, he would retch and try to throw up often and we vented the G tube a lot to allow him to release air. This is common with fundoplications because the mechanism that doesn't allow reflux also doesn't allow air to come up. While it was miserable to watch, Connor continued to eat well. We went over a month with consistent weight gain and not using the G tube for anything but burping. It would have been longer but one of our night nurses refused to wake him up to feed him in the night despite our requests...but that's another story.
Then, just 4 months after his G tube and Nissen, Connor started showing classic signs of reflux. He was refusing to eat, throwing up what he did eat or was put down the tube, he screamed and cried, and arched his back with every feed. After a month and a half of watching my son in pain, talking to every doctor I could think of, they finally decided to do an Upper GI and check his Nissen. They found it had slipped causing a hiatal hernia. Part of his stomach had torn through the hiatus (the opening between the stomach and esophagus) and was in his chest cavity. This was a complication of the Nissen.
Because of the damage to the hiatus, the only possible fix was a redo Nissen. On August 24, he had his second fundoplication. Immediately we saw an improvement in his eating, but it was short lived. Connor began sweating and his heart rate would go from about 100 bpm to over 200 bpm with every feeding. He went into a trance-like state and screamed in agony. I called doctor after doctor. They all told me they had no idea what was wrong with him. A little over a month went by and I decided to voluntarily admit him to the hospital. Eight days later, they discharged us with a diagnosis of dumping syndrome, a complication of the second fundoplication. This is a relatively common complication following stomach surgery. His food was passing from his stomach to his small intestines too quickly causing huge spikes in his blood sugar.
I'm happy to say that recently, the dumping syndrome seems to be resolving. However, my son no longer eats anything by mouth. He is terrified because of all the pain he endured. He now spends all night and a portion of the day attached to a feeding pump. We go to a feeding clinic every couple of weeks. He sees an OT, SLP, and nutritionist at least weekly to try and overcome his feeding problems.
I can't help but wonder what would have happened if they had just fed my son through an NG tube for a while. Had he made the same progress, this all could have been avoided. I believe that the jump to a G tube and Nissen was made too quickly and that the surgeons who place the tubes and do the fundos do not always know that this surgery really is a big deal. After all, I was told it was just a routine procedure.
I urge everyone considering a fundoplication to make sure you research all the options. Make sure there's a medical reason for the G tube and fundo and not just the possibility that your child won't eat. It should be a last resort but many doctors do not treat it that way.