Should My Child Have a Feeding Tube?

From NNPDF Newsletter articles and family interviews.
This page is not intended as medical advice.
Consult with your physician before undertaking any treatment or therapy.

The decision to tube feed is a very difficult one - the realization that there is a loss of skills, perhaps the guilt that you cannot manage some part of this, the prospect of surgical procedure and pain, and all the other emotionally charged issues with family, friends, and acquaintances including what it will do the getting people to help care for him at home and in school.

If there are early problems with swallowing, it seems a kindness to the child and caregivers to get a tube. If a decision is made to not have a feeding tube, weight loss and poorer health can be difficult for caregivers to manage.

Some advantages of having a tube are:
Disadvantages of a feeding tube are: When should a feeding tube be placed? Physicians recommend getting a tube early before there is a real nutritional compromise with weight loss and dehydration. If you wait until the respiratory system is compromised and you can no longer cough well, the risk of choking and aspiration pneumonia, etc, increases.


Can I still eat by mouth?

Usually, by the time you get a tube, eating by mouth has become a lengthy, unpleasant chore and you are happy to give it up. However, if you get one early, you may still enjoy eating by mouth for tastes and oral stimulation. The tube can be used to take in medicines, extra food, and calories.

In at least one case, the child refused to take eat by mouth because medications were mixed in with the meal. After a feeding tube was put in place to deliver medications and extra calories, the child returned to eating normally by mouth. Everyone was much happier as result!


What types of Gastrostomy tubes are available?

There are currently two manufactured skin-level gastrostomy devices on the market. They lie even with the opening in the abdominal wall. An extension tube is screwed into place for feedings:

The Button has a top which flips open, allowing a temporary feeding tube to be connected. The top then closes after the connector is removed after feeding. It lies close to the stomach and causes less difficulty than the standard surgical tubing when handling, moving, and dressing the child.

The MIC-KEY which features an internal balloon, making it possible to fit a child of any size. The device can be replaced at home. The MIC-KEY allows the feeding tubes to be locked in place during the feeding. It also allows for trapped gas and air in the stomach to be “vented.”


How is the tube placed?

The tube is pulled down through the esophagus and “stabbed” up through the stomach and abdominal wall rather than making an incision. A small “bumper” on the inside and outside act as a vice to hold the tissues together until a tract heals creating a tunnel allowing the tube to be replaced as needed. Since there is no incision, little bleeding, etc. clear liquids can usually be given within several hours and feeding begun after a 24-hour period.

At the time of the gastrostomy surgery, the surgeon may recommend another surgical procedure called a fundoplication. This consists of folding the upper part of the stomach up and around the lower end of the throat (esophagus) in a little pocket as a way to control possible refluxing (vomiting) of gastric acid and food. This is a rather long, complicated procedure requiring several days of acute care. Close attention to positioning, medications and feeding schedules can be used to manage the reflux and this extensive surgical intervention is reserved for only the most extreme cases.


Can the tube be seen when it is not in use?

Yes and no. With the shirt off, the tube is visible (and must be for feedings). However, when the child is normally dressed, the tube is not obvious - it looks like a smallish bump under the clothes.


How is the feeding done?

The kind of liquid food to be used, the amount, and the size and number of feedings will be worked out by the physician and the dietician. Feedings may be:

Kangaroo bag (gravity). The kangaroo bag method uses a plastic bag connected to a long extension tube. This is simply attached to the feeding fube and liquid poured into the bag flows into the stomach by gravity.

Bollus. Fastest and simplest, the bolus method uses a large syringe attached to a feeding tube. The liquid is pured into the syringe and allowed to flow in as fast as is tolerated.

Kangaroo bag (pump). An electric pump which administers the feedings at a set rate. The pump allows feedings to be more consistent and fed at a slower rate which may help to control refluxing. Portable pumps are also available which can be hung from the back of the wheelchair so feedings can be done while on the bus, walking through a mall, or in a car.etc. to allow for continuous feedings throughout the day.

Feedings should be done in an upright position with at least a 30% incline for 30-60 minutes after each feeding to prevent refluxing and aspiration pneumaonia (fluids moving up into the throat and down the airway causing an infection.


Is oral stimulation important?

It is very important that an oral stimulation program using various tastes in drops of liquid that refresh and moisten the mouth be started. You can use a toothbrush, a tootherre, a cloth moistened with a liquid. You will need to keep the mouth clean of build up on the roof, tongue, and the teeth. Continue visits to the dentist on a regular basis.


Do you have an experience that you would like to share? Send us your comments.

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