The decision to place a gastrostomy feeding tube is often difficult for families. Parents may feel guilty that they are unable to meet their child’s nutritional needs. It is important for families to realize that the reason their child needs a feeding tube is related to the child’s disability, and is not a reflection of the family’s efforts. Children with developmental disabilities, such as cerebral palsy, are at risk for different feeding problems. Our overall goal is to help families make the best decision for their child.
What is a gastrostomy tube?
A gastrostomy tube is a soft, flexible tube which can be used to give fluids, formulas, and medicine to children who have difficulty taking these products by mouth. The tube is placed by a surgeon through the stomach wall into the stomach. Fluids, formulas, and medicines can be given directly into the stomach through the tube.
Why would my child need a gastrostomy tube?
- Poor growth (despite dietary supplements). A child who grows poorly may become chronically undernourished. This places a child at risk for many problems, including: increased risk of infections, poor wound healing after surgery, poor healing of skin sores and overall decreased energy with less potential for development.
- Significant time and effort involved with feedings. This can be very frustrating for families. The increased time required for feedings may decrease the time you and your child have for more pleasurable activities.
- Aspiration. Aspiration occurs when contents from the mouth or stomach go into the breathing tube or lungs during oral feedings, resulting in recurrent respiratory problems (infections, wheezing, etc.). Aspiration may cause discomfort which will decrease your child’s interest in feeding even more.
Will my child be able to eat by mouth if a feeding tube is placed?
Children who do not aspirate are often able to continue eating by mouth after the feeding tube is placed. Oral intake may be more pleasant when there is no stress or pressure associated with having to feed enough for all the child’s needs. Your doctor will let you know if your child can still eat by mouth or receive oral stimulation. (An oral stimulation handout is available). Your doctor will tell you what formula should be given through the tube.
Is a feeding tube permanent?
Some children will regain the ability to meet their nutritional needs by mouth. In this situation, a gastrostomy tube can be removed and the site will then heal over.
What tests may need to be done before the feeding tube is placed?
- Blood work: To assess the protein stores in the body and to monitor for the complications of under-nutrition, such as anemia or low calcium (bone density).
- Videofluoroscopy (swallow study): To evaluate for aspiration that may occur during the swallowing process.
- UGI (upper gastrointestinal study/barium swallow): To evaluate the anatomy of the esophagus (tube from mouth to stomach) and stomach, and to look for gastroesophageal reflux. (Reflux occurs when stomach contents go upward into the esophagus.)
- Gastric emptying study: To determine if the stomach empties so slowly that GI feeds may lead to more reflux.
If there is aspiration but the UGI does not show reflux, a more specific and sensitive test may need to be done to further evaluate for the possibility of reflux. If aspiration and reflux are present, the doctor may recommend a surgical procedure called a Nissen fundoplication.
This is done at the time of gastrostomy tube placement, to tighten the junction between the stomach and esophagus and prevent reflux.
How long will my child be in the hospital?
After tube placement, your child will be in the hospital for approximately 4-6 days to develop the best tube feeding schedule for you and your child, and to be sure your child is tolerating the feedings prior to discharge. You will be given instructions about using and caring for the tube before your child leaves the hospital. You will also be given the phone number of a clinic nurse to call if you have questions or problems after you go home.
It may be helpful for you to talk with a family who has a child with a gastrostomy feeding tube and hear about their experience. Please let us know if you would like to do this. In addition, we are available for any questions you may have. Please let us know how we may assist you in this decision.
This information is for educational purposes only. It is not intended to replace the advice of your health care providers. If you have any questions, talk with your doctor or others on your health care team.