Our Decision for, and Results of, Nissen Fundoplication

While in the NICU there are many decisions that you easily defer to the doctors’ recommendation.  There are others, however, that takes a little more consideration.  One of those more thoughtful decisions, for us, was whether or not to take the Neonatologists’ recommendation that Owen get a Nissen Fundoplication (I’ll call it Nissen, since that’s what was used by Owen’s medical team, however, others call it a Fundo).

As with any medical procedure or diagnosis that I write about in this blog, please keep in mind that I’m a mom with no medical training.  My sample size is one.  I’m not recommending, nor am I qualified to recommend, that anyone do or do not get a Nissen.   However, I wanted to share our story solely from the perspective of WHY we chose a Nissen for Owen and to discuss the RESULTS after one year.  My hope is that other parents who need to consider a Nissen may glean some questions to ask their doctors.  I’m also interested in hearing others’ experience with Nissen decision-making and results.

What is a Nissen Fundoplication:  A Nissen is a surgical procedure that wraps the top portion of the stomach around the esophagus to strengthen the valve between the stomach and the esophagus.  The purpose of the procedure is to reduce/eliminate stomach acid from backing up into the esophagus (Reduce GERD/Reflux Symptoms).

Why was it recommended that Owen get a Nissen?  As Owen worked his way to full feeds, his oxygen needs and respiratory status were worsening.  He was showing extreme discomfort and arching frequently.  Typically prescribed drugs were not helping.  Also, he had a couple very scary episodes where he stopped breathing and had severe heart rate drops while he was being fed.  After the second time, I said no more feeding him until we have a solution.  The doctors suspected that Owen was aspirating on his reflux and made the recommendation for a Nissen.

How was the surgery?  First, let me say there are two types of Nissen Surgery – Open or Laparoscopic.  Owen required the open procedure due to this being his fourth major abdominal surgery in four months.  He also, received his g-tube during the same operation.  With all that in mind, the surgery was hard on Owen.  He was on the ventilator for 7-8 days post op.  Due to the many operations he’d already had in his short life, he had built a tolerance to pain medications and was on very high levels of narcotics to keep him comfortable.  Also, Owen had a history of requiring a lot of blood product during surgeries, and this was true for his Nissen.  Receiving blood adds fluid to the body.  So, the vent was partly due to sedation levels required and partly due to fluid in the body and mostly due to Owen’s lungs being in rough shape to begin with.  We were told that many, healthier, kids do not need the vent post op.

What are the outcomes for Owen?  For Owen, the procedure seemed to be the magic bullet that allowed him to eat, be pain-free and his lungs to improve.  Just two weeks before the procedure, we were told that the timeline for Owen going home could easily be Thanksgiving or Christmas.  After having the procedure, Owen went home in less than three weeks, which was almost 2 full weeks before Halloween.  One year later, he has not since had issues with reflux.

What are the side effects for Owen?

  • Owen cannot burp.  If he has excess air in the stomach, we need to vent him through his g-tube or he can have severe gas pain.
  • When Owen needs to throw up, he can’t.  He only retches.  The retching appears to be painful.  To help minimize retching, we run his feeds very slow.  He gets his feeds over 45 minutes to an hour.  If he’s sick, we slow it down even more
  • I’ve also seen him on a couple of occasions (gross warning!) convulsing like he’s going to throw up, but it comes out the other end.  From his reaction, I believe this type of throwing up is much more painful than what most of us experience.
  • Since the surgery, if Owen starts crying really hard, he will often start coughing/gagging.  I don’t know if this issue is a typical response.  The theory is that because his esophagus is narrower, the overflow of saliva from crying gets backed up and he coughs to protect his airway.  When he cries really hard, I often have to lay him on his stomach across my lap and pat his back to help send the saliva out his mouth.
Will he always have those same side effects?  I don’t know.  The surgeon told us that in, young pediatric or neonatal cases, he typically sees the side effects lesson as the child grows because the wrap will loosen through the growing process.  In some cases, the wrap will come completely undone.  If that happens and the reflux is still as severe, a second operation may be necessary.
If we went back in time, would we make the same decision?  Yes.  In Owen’s case, it seemed this was our best chance of giving him his best quality of life.  Healthy lungs and overall physical comfort still seems more important than the side effects.  The side effects do not affect our everyday care of Owen.  He does not need to be vented most days.  I’ve only seen him “throw up” when he was in the hospital and getting deep suctioning.  The response to his feeding and crying quickly became second nature to us. I wish we hadn’t had to make the decision, but, in our case, it still seems like the best decision.

If you’ve had to make a decision on a Nissen, what did you decide and are you happy with your decision?  Why?

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

9 thoughts on “Our Decision for, and Results of, Nissen Fundoplication

  1. I came across your blog through the Life After NICU support facebook page. Your post today just so happens to be something we also experienced. My daughter Mya was born at 28 weeks 1 day due to my health complications. She also experienced the acid reflux issue. We also choose to do the Nissen and G-tube surgery. It was the only way she would be able to get over it. She had the NG and NJ tubes for her feedings up till the surgery. She doesnt bottle and refuses to because she remembers when we have tried to bottle her and she would have her breathing spells due to her acid reflux. After her surgery she has been such a happier baby and that is enough to make us know that we made the right choice for her and she hasnt had any breathing spells. She also has the coughing/gagging or our drs call it retching. She will cry so hard that she will start to cough ang gag but our way to help her is to vent her. Our Drs have told us any crying causes more air in the stomach so the only way for her to get the air out is through venting her. She just turned 5 months yesterday but is only 2 months gestiational age. I look forward to going through your past posts about your NICU adventure!

    • Thanks for sharing your story, Jenna. It’s always interesting to hear of others who have had similar experiences. I was given the impression that Nissens are not that common in our NICU, so I haven’t met a lot of families who also chose this path. I definitely agree that, with prolonged crying, we always vent Owen. However, he tends to calm better by getting gently bounced on my lap while he’s on his stomach, so I try that first. Definitely been a lot of trial and error since there doesn’t seem to be a manual for each kid 🙂

      • There have been plenty of trials and errors on our end too! We always have tried our hardest to keep a positive attitude with it all. We know we are doing the best we can and we do it for her! You may also read up on Mya’s story and our experience with her Nissen and Gtube on her caringbridge site…myasneller.
        I read your little man is in the hospital. Saying a prayer for him that he will fight through this and be back home in his own crib!

        • Mya is beautiful! And a Gopher fan! Her due date was 1 year and 1 week after Owen. So many things to like about her. Thank you for sharing. I was interested to see that she hadn’t been on O2 going into surgery, but still needed the vent for a while afterwards. It really is a tough surgery isn’t it, but I’m so happy that our kids have a chance for a better life because of it.

  2. I feel like you are a kindred spirit! Thank you for writing about your experiences. Frank, my 27 weeker, had the Nissen when his G tube was placed. It was the toughest decision we made in the NICU and by far one of the best. My little guy is able to grow and not have to deal with reflux. It was like he was a different child one day post op, than when he went in for the surgery. Keep writing… It makes RSV lockdown somewhat bearable! 🙂

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  5. Just came across your blog. I had twin micro preemies at 25 weeks in 1985!!! Our smallest one, Kara, only lived 9 days. Our other daughter, Krista, is now 30 years old. She had a nissen and still is not able to throw up. I was searching the internet because she is now pregnant with her first child and is having a pretty good bout of morning sickness…dry heaving, the poor thing. Other than the not being able to throw up thing, she has had no trouble with the procedure. Hope everything is well with your little preemie.

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