Spinal muscular atrophy (SMA) is characterized by progressive muscle weakness and atrophy. Depending on the type and severity of the condition, children with SMA experience feeding problems such as difficulties in swallowing or chewing due to limited range of jaw movement, trouble moving food around the mouth with the tongue, or decreased bite force and fatigue in the muscles involved in chewing. Poor head control can also cause problems and put patients at risk.

Feeding tubes are an option for children with SMA that suffer from poor nutrition or are at risk of developing aspiration pneumonia (a lung infection that develops due to food, liquid or vomit being aspirated into the lungs).

What is tube feeding?

Tube feeding is a method that allows a person to be fed through a tube leading directly into their stomach. At the 2015 Annual SMA conference, recommendations and practices were given on tube feeding for children with SMA, including information about feeding tubes as short- or longer-term options.

Types of tube feeding

Short-term feeding tubes

Short-term feeding tubes are easily placed and replaced if necessary. They are a little uncomfortable to use, and can create complications such as sinusitis, sore throats, tube blockage or dislodgment. Existing types of feeding tubes for short-term nutrition include nasogastric tubes and nasojejunal tubes.

  • Nasogastric tubes (NG tube): The tube goes through the nose and all the way to the stomach. Its correct positioning is confirmed by X-ray.
  • Nasojejunal tubes (NJ tube): This is a type of tube similar to the NG tube but it goes to the small intestine. It is used when there is a risk of aspiration or if reflux, nausea or vomiting are present.

Long-term feeding tubes

These types of tubes are for long-term use. They can cause complications such as infection around the tube, excess drainage, and dislodgment. Existing options include gastrostomy tubes and percutaneous gastrostomy tubes.

  • Gastrostomy tubes (G-tubes): The tube goes into the stomach through the abdominal wall. It is positioned in a hospital setting under local anesthesia. The larger tube diameter allows the patient to receive nutrient solutions and medications faster with less clogging. This option is considered for more than three to four weeks of use.
  • Percutaneous gastrostomy tubes (PEG tubes). This tube is also placed under anesthesia but from the inside out, using a special scope that is inserted into the stomach through the mouth.

How is food given?

Depending on the type of feeding tube that your child receives, the doctor or the nutritionist will write a prescription for the feedings (known as formulas). The most common tube feeding methods include bolus feeding, intermittent drip feeding, and continuous feeding.

  • Bolus feeding is typically given with a G-tube to children who can move food successfully through the digestive tract. Bolus feeding is administered through a syringe for five to 20 minutes several times per day, depending on the child’s nutritional needs. Complications include nausea, vomiting, diarrhea, abdominal distention, and aspiration.
  • Intermittent drip feeding is administered through gravity drip or using a feeding pump. It is given several times per day for 20 to 60 minutes. Nausea, vomiting, diarrhea, bloating, and aspiration are some of the complications that may arise.
  • Continuous feeding is a feeding method that makes your child less mobile but is considered if he or she has gastrointestinal problems, needs slower feeding due to intolerance of larger volumes of formulas, is at high risk of aspiration, or is fed by a tube that goes to the jejunum (middle segment of the small intestine). This method is done through a feeding pump over long periods of time ranging from 60 minutes to 24 hours. Complications include, nausea, vomiting, diarrhea, and abdominal distention.
