People with spinal muscular atrophy (SMA) have muscle weakness that can lead to difficulty chewing and swallowing. If it becomes hard to get enough nutrients safely by mouth, a feeding tube may be needed. Feeding tubes provide nutrition directly to the stomach through a tube.
Your doctor will determine the type of tube needed based on your specific factors. The type of formula used also varies for every person. We do not yet have enough research on the best way to use tube feeding in SMA. All decisions are made on a personal basis.1
When do people with SMA need a feeding tube?
People with severe types of SMA are often unable to get enough nutrients because of difficulty swallowing. Eating by mouth may be unsafe because of the risk of inhaling food or liquid into the lungs (aspiration). Feeding tubes can fulfill nutrition and fluid needs if oral feeding is not enough. They are commonly used in type 1 or 2 SMA.2
To decide whether a feeding tube is needed, doctors will perform a swallow study. This determines how well someone can swallow different types of food. Doctors will recommend a feeding tube if your child is:3
- Unable to swallow safely
- Unable to meet nutrient needs by mouth
- Not growing well or maintaining weight
- Unable to drink enough fluid
- Sick and temporarily unable to eat or drink
- Undergoing surgery
Every person uses feeding tubes differently. Some people use them continuously during the day. Others use them for shorter bursts. Some people need all nutrition through a feeding tube, while others only need it to supplement feeding by mouth. Some ways they can be used include:3
- Nighttime feeding, with oral feeding during the day
- Feeding after oral meals to top off calories
- Feeding as snacks between oral meals
- To give fluids, with or without medicines
- Only during illness or fatigue
What are the types of feeding tubes?
The type of feeding tube used depends on how long it is needed and other personal factors. Your doctor will help decide if the need is temporary or long-term. Other factors that affect what type of tube is used include:3
- How well the gastrointestinal (GI) tract is working
- What is the most comfortable option
- The risk of aspiration
There are 3 main types of feeding tubes.
Nasogastric (NG) tube
NG-tubes are small, flexible tubes inserted through the nose. They are easy to place and remove without surgery. Usually, NG-tubes are temporary solutions for swallowing and feeding problems. Over time, they can cause complications. This includes sinus infection, sore throat, and tube blockage.3
Gastrostomy (G) tube
G-tubes are small tubes that are surgically placed through the skin. G-tubes are a longer-term solution for swallowing and feeding problems. Possible complications include infection around the site, excess leakage, or a dislodged tube.3
Gastrostomy-Jejunostomy (G-J) tube
G-J tubes are small tubes surgically placed through the skin. They have 2 ports: 1 into the stomach and 1 into the small intestine. Feedings into the small intestine can help prevent aspiration of stomach material that comes back into the throat (acid reflux). These sometimes require special formula and extra appointments to replace the small intestine tube. Complications are similar to G-tubes.3
What are different types of feeding tube formulas?
After a tube is placed, doctors will teach caregivers how to give feedings. They will also help make a plan for when and what to feed. This includes prescriptions for formula and supplies. There are 3 types of formula that vary based on the type of protein. These include:3
- Whole protein
- Semi-elemental (peptides)
- Elemental (amino acids)
Proteins are made of smaller units called peptides, which are made up of even smaller pieces called amino acids. Different brands of formula contain these different levels of protein. Formulas are available for infants, children, and adults.
Elemental formulas are the most commonly used, but there is no consensus on which type is best. Formula type depends on personal factors, including:3
- Food allergies
- Bowel function
- Acid reflux
- Type and size of feeding tube
- Balance of nutrients
If you have questions about feeding tubes and formulas, talk to your care team.