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This one is about: PRS and Feeding Tubes
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Answering the question:
Pierre Robin Sequence (PRS) - Tube, vs NG Tube, vs G-tube for feeding
(This was excerpted from a response posted to Cleft-talk where a parent asked how long a tube would be in for feeding a friend's child with PRS)
Your friend asks how long the tube will be in. I guess the first question I have to ask is what (kind of) tube is she using? Is her baby being gavage fed? Is it an NG tube or a G-tube?
I think in a way there is a different time table. If the child is gavaged (fed) they probably feel that in a very short time the baby will begin feeding via a nipple or breast shortly.
If the baby is NG (Nasogastro) tube fed, I would say they probably believe that the first 3-4 months is probably going to be (hopefully) all the alternative feeding that the baby will need...basically the neonatal period of time.
If the child is G-tube fed I believe that the expectation of tube usage is probably 6 months and longer - possibly up to a couple of years.
This is for a PRS baby -- babies with other problems who have a g-tube often have their g-tubes in for much longer times and in some cases life long.
The only thing that will hasten the removal of the use of the tube in all these cases is that the child receives their primary nourishment via the mouth and is gaining weight doing so. This may be encouraged by offering the child pacifiers to get use to sucking and introducing a bottle so that the child can get use to receiving milk via a nipple of sorts. She may need to try a variety of nipples and bottles. The Haberman seems to be the most used of PRS babies, however, Meghann didn't use one so I can't tell you anything about it.
G-tube versus NG tube:
1. g-tube surgically invasive -- ng tube not
2. g-tube less chance of aspiration into lungs
3. g-tube is not as obvious to the onlooker as a ng tube (unless you are feeding) as the ng tube is usually taped to the face of the infant/child and the g-tube is usually covered by clothes.
4. Ng tube is readily accessible to the infant who may pull it out. Although the infant can pull the g-tube out it is less likely.
5. Some types of g-tubes can only be placed in by special tools and a physician.
6. Both tubes can produce oral defensiveness.
7. Occasionally another procedure must be done along with or following the surgery for g-tube (there are also other reasons for this procedure). It is called a fundoplication and is done because the sphincter from the esophagus to the stomach is weak and the contents of the stomach may go back up through the sphincter (valve) and back into the esophagus causing them to throw back up (reflux). Basically in very simplistic terms they wrap the stomach around the esophagus making it much more difficult for the stomach contents to go back up.
Which would I have preferred...gosh that is a hard one. Meghann was ripping the ng-tube out at 3 days of age and I was scared to death that I would not be able to get the tube back down her or she would get it pulled up a little too much and the milk would get into her lungs etc etc. But I also felt that she would have it for a long time. And although 6 months is a long time I think the physicians thought she would have it much longer. I have found that a lot of PRS infants that have feeding problems at birth (some don't or it is very mild) often do better with the g-tube. I don't know why they do better on it versus the ng-tube but this has been my experience. I'm not saying that you should get it (the g-tube) because surgery for any reason is a risk, but you need to get what info is available about the prognosis is for the child in feeding via the mouth enough to ward against weight loss and failure to thrive. If they feel that in a couple of months she/he will be able to feed "normally" then I would not have the surgery, but if there is a real case of we really don't know WHEN or we are looking at long term usage. I would consider the surgery. This is just a personal opinion.
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