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G-Tube Feedings

Nick with g-tube

Not every baby born with PWS will require the longer term feeding system of a g-tube. Many families use temporary nasal-gastric (ng) tubes and/or special feeding techniques for the first couple of weeks and transition to normal feedings fairly quickly. Other families (like ours) find that despite wonderful therapists and techniques, the baby is just not taking nearly enough to maintain their health and will require the longer term solution of a g-tube. In the above picture you can see what the initial g-tube looks like. After the site has healed (2-4 weeks) a Mic-Key button is inserted in place of the g-tube. This 'button' looks much like the plug on a beach ball and is much less intrusive and easier to use than the tube.

Why go through the invasive surgery instead of just using ng tubes for several months or longer?

First, the ng tube needs to be checked for correct placement before every feeding. If the tube slips out of the stomach area and up toward the lungs, aspiration can occur during the feeding. In contrast, once the g-tube is placed in the stomach 'feeding the lungs' is not a concern.

Second, the ng tube runs down the back of the throat. If placed long term, this can cause irritation and oral aversion where the baby does not want anything like a bottle placed in their mouth. While an OT can help to overcome oral aversions it can be a long process and can delay coming off of tube feedings even once the strength issue has resolved itself.

Whatever technique is decided upon to help your child feed him/herself during those early weeks or months remember that it will get easier.  Soon, the routine of the tubes becomes automatic and in the long run, they are only temporary. The benefits your child will get from having proper fat for brain development will be life long!

Oscar with ng-tube