Gastrostomy Tubes (“G-Tubes”)
As people with Duchenne grow older, many begin to lose weight. This is principally because as swallowing becomes more difficult, you are unable to take in enough calories by mouth. If you notice that you are losing weight or swallowing makes it hard to eat enough calories, it may be time to consider using a permanent feeding tube known as a gastrostomy or g-tube.
A feeding tube will allow you to still eat for pleasure, but will give you another means by which to maintain your calories and nutrition. It is important to maintain good nutrition in people with Duchenne. Poor nutrition causes the heart to not work well, more likely to have life threatening infections, and more difficult to maintain necessary energy to breath well.
What is a gastrostomy tube?
A gastrostomy tube is a feeding tube that is placed directly through the abdomen wall into the stomach. There are several different types of gastrostomy tubes that can be placed, and your surgeon or gastroenterologist will help determine which is the best type for you.
The decision to place a gastrostomy tube
Early discussions about the placement of a gastrostomy tube (or g-tube) with your care team makes it easier. Placing a g-tube is a necessary and positive intervention for people with Duchenne who have difficulty consuming enough calories and nutrition.
The major advantage of a g-tube is they reduce the risk of aspiration leading to lung infection in those with weak swallowing muscles. They also allow for maximized quality and quantity of nutrition you receive. Receiving nutrition from a g-tube can optimize your weight, as well as ensure you are getting adequate amounts of protein, fat, and other nutrients. You will also be able to improve your hydration.
It is normal to feel a nervous about getting a g-tube, but many families feel relieved once they have one. This way, there is less added stress about making sure you have adequate nutrition. Additionally, you will feel better and have more energy now that you are receiving correct nutrition.
Types of gastrostomy tubes
Long tubes or Percutaneous Endoscopic Gastrostomy (PEG) tubes
These are one-piece tubes that are held in place by an internal balloon or an external bumper. The tube on the outside is flexible. The long tube may be necessary to place at first, but after it heals a more low profile “button” tube can be placed.
Low profile button tubes
These tubes do not have a long tube permanently attached to the outside of the abdominal wall. These require an extension piece that is attached when you are feeding or giving a medication, and then can be disconnected when you are not using the tube. These “button” tubes lie fairly flat against the stomach wall and can be easily disguised under clothing.
The placement of a gastrostomy tube is a relatively common procedure that usually takes less than an hour to place. There are several methods to place a g-tube, but all are fairly simple and your surgeon will explain all details of the procedure. Many times, ultrasound or tiny cameras are used to place these tubes endoscopically, which makes recovery quicker.
You/your child may feel a little pain near the incision site, but this can be managed with medications given by your doctor. You/your child will most likely remain in the hospital for 1-2 days to recover from the procedure and also learn about the care of the new g-tube.
Care at home
You will quickly learn all of the skills necessary for caring for the new g-tube. It is important to learn about how to take care of the skin around the tube to keep it clean and prevent any infection. You will also learn how to handle potential problems, such as the tube accidently falling out or becoming clogged.
You will also be taught how to feed through the tube, usually with a feeding pump. Your nutritionist will help plan a specific diet and feeding schedule.
There are several abdominal binders or protective belts on the market for use with g-tubes. You can wear these around your waist to secure your tube as well as prevent them from getting caught on clothing. Ask your doctor for recommendations for the best abdominal binders for you.