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Any G-tube and or Cleft palate Momma's?

JakesBride07JakesBride07
in Special Needs

Our little girl maybe be headed this route for reflux as well as having a Nissin (sp?) put in.

She also has a cleft palate and they are saying ita possible we could prolong surgery on the palate for a few more months with a G-tube.

But I wonder if what tests should be done first before we go to the g-tube. She is now full term and we haven't attempted bottles or bolus feeds since 32 ish weeks.

Any advice, concerns etc? A friend of mine has a lo with a g-tube still at age 13 due to food aversion, he refuses to take food by mouth at all, and this concerns me a little. Any advice to help prevent or over come food aversion with an infant?

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Re: Any G-tube and or Cleft palate Momma's?

  • JustinloveJustinlove member

    How is she eating now (continuous drip ng tube since you said she does not do bottles or bolus?).  If she has an open cleft and not eating orally, I would assume it is an aspiration issue?  We might need more details to help you know what possible tests you could ask about.

    DD has a gtube because she aspirates.  Quite honestly, food aversion is the least of our future concerns since it is dangerous for her to eat orally as long as she aspirates.  We do oral motor exercises and tastes right now.  She'd eat orally if we could let her. 

    A 13 yo who will not put anything in his mouth most likely has some other sensory/control issues going on--the gtube is not the cause of his issues.  The gtube is what is keeping him alive if he won't eat.

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  • rsd12rsd12 member
    I am sorry but I have no experience with G-Tubes.  My oldest was born with a Cleft lip & palate, but we did not have any serious feeding issues. He was able to take the pigeon bottle without any problems.  I could help answer questions about the palate issues or surgeries. 
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  • twoasone1twoasone1 member
    My son has a g-tube.  It was one of the best decisions we ever made.  Let me know if you have any specific questions about the tube.  Good luck!
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  • twoasone1twoasone1 member
    Oh, I also wanted to add that I would caution you to do a lot of research and make sure you find an awesome surgeon who has done a ton of the surgeries before you do the Nissen Fundolplication.  It is great for some kids, but it really makes a difference on the surgeon you have.  Good luck once again! 
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  • mskolmanmskolman member
    My son had a serious heart defect and had a GJ-tube put in for reflux issues. We avoided the Nissin by having the GJ-tube put in, which feeds right into the intestine instead of the stomach. He is 2 and still fed 100% from the tube. But, he had major airway issues and is still on oxygen, so feeding was put on the back burner for awhile. We have him in feeding therapy and he has been to 2 different feeding clinics. There is a lot of help out there to get these kiddos to eat. He will take tastes, but we are obviously trying to get him to take more than that. It will take awhile, but we know he will get it eventually. My best advice is to seek out resources in your area. They have specialized feeding clinics just for these types of kiddos. 
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  • mfisher123mfisher123
    My DD had both a cleft palate and a g-tube. Cleft palate was repaired in March, and we are working on feeding now (so she still has the tube). I'd love to answer any questions you may have, let me know!
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  • TriciaJoyTriciaJoy member

    My son had both a nissen and a G-tube.

    The Gtube was absolutely 100% necessary for us. If it came down to a choice between a nasal tube and a gastric tube, a gastric tube wins hands down.
    The NG did FAR more damage to my son's food tolerance than the G tube did.
    I don't know if you've ever had a tube down your throat, but it's not very pleasant. My son ended up extremely defensive of his entire face for while a while, and he only had an NG for 4 weeks outside of the NICU. (He was born at 26 weeks.)

    The nissen, however.. I don't even know how to say how I feel about it. We were honestly pressured into it w/o a lot of explanation. There are definitely issues with them in children- they make digestion a bit different, and can lead to trouble burping and vomiting when they NEED to. It also is a different kind of stretch to hold more food as they grow.

    My son had a congenital defect in his stomach and we were lead to believe that the nissen was the fix for that. That wasn't so.

    As it turned out, it didn't work anyway- my son continued to vomit upwards of 20x/day for over a year. So I can't speak to the effectiveness.
    In my opinion, the only reason I would ever agree to one again (knowing what I know now) is if aspiration were an issue or if there was so much puking of food even after an GJ tube that it was hazardous to his health.

     

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