Feeding Tubes

Many families are initially hesitant about tube feeding – sometimes because it feels like an escalation in the child’s medical care away from perceived normality, and sometimes out of concern about the risks of a surgical procedure. 

The decision for or against a feeding tube is a personal matter for each family. It depends on many factors, and must often be reconsidered over time. 

If the child’s current feeding situation is not perceived as a burden, waiting can be an option. However, if feeding becomes stressful for the child and the entire family, choosing to switch to tube feeding can provide relief. Most families who decide in favor of a tube describe the improved feeding situation as a major relief for themselves and their children.

Types of Feeding Tubes

• nasogastric (NG) or nasojejunal (NJ) feeding tube
• surgically placed tubes:
  • PEG (percutaneous endoscopic gastrostomy)
  • gastric feeding tube (button/G-tube)
  • PEG/J or GJ-/J-tube (percutaneous endoscopic jejunostomy)

Glossary: Percutaneous = through the skin, Gaster = stomach, Jejunum = section of the small intestine, Endoscope = medical instrument used to examine body cavities

Feeding tubes can be used as the sole source of nutrition, but this is not always necessary. Even with a tube in place, oral feeding remains possible, though this is more limited with nasogastric/nasojejunal tubes.

Nasogastral (NG)/Nasojejunal (NJ) Feeding Tubes

These tubes are inserted through the nose into the esophagus and end inside the stomach (gaster) or a section of the small intestine (jejunum). Placement is simple and does not require surgery.

They may feel uncomfortable and can interfere with swallowing.

They are not intended for long-term use.

In everyday language, they are also referred to as “nasal tubes.”

PEG (Percutaneous Endoscopic Gastrostomy)

A PEG is an artificial access point through the abdominal wall directly into the stomach. This opening is called a stoma.

It is created surgically.

A plastic tube, called the PEG tube, is placed through this access. A short segment with a feeding attachment remains outside the body.

The PEG tube is secured with an external fixation plate and an internal fixation plate against the stomach wall.

A PEG tube can remain in place for months or years if no complications occur, making it suitable for long-term tube feeding.

A PEG does not interfere with swallowing, so oral feeding remains possible. It provides a reliable way to give nutrition and medication.

Disadvantages of a PEG

•  Surgical procedure required for placement and, potentially, for replacement in case of problems
• Risk of local wound infections, material issues, or ingrowth of the internal fixation plate

G-tube/ Button

Once the access created by a PEG has healed (after 4–6 weeks), the tube can be replaced by a gastrostomy tube or a button. Buttons are smaller and generally more comfortable. They are kept in place by an internal balloon instead of a fixation plate. The balloon can be deflated for insertion, allowing tube changes without a new surgical procedure.

PEG/ J or J-tube

In a PEG/J, also called JPEG (jejunal tube through PEG) or GJ-tube, a tube is inserted through the PEG into the jejunum, the middle part of the small intestine. This allows feeding into the stomach through one channel and directly into the small intestine through the other.

A PEJ or J-tube involves creating direct access to the jejunum through the abdominal wall, bypassing the stomach entirely.

When nutrition is delivered directly into the small intestine, the stomach’s reservoir and digestive functions are bypassed. Specialized nutrition must therefore be given continuously over 24 hours rather than as individual meals.

Tube Placement Methods

Endoscopic

The endoscope is inserted through the mouth and esophagus into the stomach. Light is used from inside the stomach to identify the correct point for access on the abdomen. Where the light shines through the tissue, the skin is punctured, the access is created, and the tube is placed.

Laparoscopic

If endoscopic PEG placement is not possible or not desired, the procedure can be done laparoscopically. A small incision is made in the abdominal wall to insert the laparoscope which is then used to place the stoma and tube.

Rendez-vous PEG

This refers to a laparoscopically assisted percutaneous endoscopic gastrostomy. It combines the endoscopic and laparoscopic approaches, allowing placement under direct visualization. For certain risk profiles, it can be a useful alternative for reducing the risk of complications while remaining minimally invasive.

Scientific Background

Natural History Study from 2014

21 of the 33 children had a PEG tube. Seven were mainly fed orally, six predominantly by tube, and eight exclusively by tube.

The impact of PEG nutrition on somatic parameters (length, weight, head circumference) could only be studied in four selected cases, in which BMI stabilized. It was not possible to determine from the data whether this also had a positive effect on head growth or development. Subjectively, 18 parents viewed the PEG as an important and necessary step that improved feeding, reduced stress in daily life, and had a positive effect on their child’s development.

Natural History Study from 2023

Nasogastric feeding tube: 27/53 children had at some point been fed by a nasogastric tube, usually temporarily during hospitalization or shortly after birth.

PEG/Button/G-tube: 29/53 children had received a PEG, typically around age two. Of these, 27 children had also been tube-fed at least partially via PEG.

PEJ: Only 2/53 children were fed via a PEJ tube.

Children who were exclusively tube-fed were still often given oral taste experiences.

PEG placement: Endoscopic placement resulted in more complications than laparoscopic placement, though the difference was not statistically significant and overall complication rates were not higher than those reported in literature. Other publications also suggest general advantages of laparoscopic placement, especially in children considered high-risk patients. Due to the small number of cases, no recommendation can be made. The choice of placement method depends on the child and the surgeon’s experience and is therefore an individual decision.

Growth with PEG: When compared to children without a PEG, there was no difference in survival, gastrointestinal symptoms, symptom burden and quality of life in children who were at least partially fed via a PEG tube long-term. However, it was found that weight and BMI development tended to be more favorable in children fed via a PEG tube (based on a small number of cases).

This entry was written to the best of our knowledge based on the reported experiences of parents of affected children. In addition, currently available data from the 2014 and 2023 Natural History Studies of PCH2 and from general medical literature has been included. It is not a substitute for consulting a medical professional. PCH2cure assumes no liability in this respect.