Some children with cerebral palsy have difficulty or are unable to feed themselves. Some have trouble ingesting important medications. In these cases, parents may consider utilizing a feeding tube to ensure their child receives adequate nutrition.
Clearly, the decision to use a feeding tube requires the participation of doctors and nutritionists. It may be that your child isn’t experiencing adequate caloric intake and is experiencing a lack of appropriate weight gain. Even if their weight is within the prescribed spectrum, they may be deficient in certain vitamin intake.
If you are considering a feeding tube, your child’s physician will be able to direct you to the most appropriate type. Tubes can be inserted through the nose, leading to the stomach, or directly into the stomach wall. This will be done with the child under anesthesia, so the procedure should be painless.
Some of the types and terms you may want to familiarize yourself with:
G-tube (Gastrostomy Tube) – refers to a tube inserted through the abdomen into the stomach. It is primarily used when long-term feeding is foreseen.
PEG tubes – PEG stands for “percutaneous endoscopic gastrostomy.” It is a type of G-tube inserted endoscopically into the stomach.
Bard Buttons – named for the company that manufactures them, a bard button is a G-tube with an external “button” that sits flush with the skin. An extension tube is connected to facilitate feeding.
Nasogastric (NG) Tubes – a tube that is inserted through one nostril, passing through the esophagus and into the stomach. This is usually only used for short term needs. It does not require a surgical procedure to insert.
Nasojejunal (NJ) and Nasoduodenal (ND) tubes – these tubes are very similar to NG Tubes, except that they are ultimately thread into the middle section of the small intestine (the jejunum) or the duodenum (the first part of the small intestine, just beyond the stomach). These are for children who, for whatever reason, cannot tolerate feeding into the stomach.
If it is determined that your child will benefit from the use of one of these feeding tubes, the next step in the process is to work with the doctor and/or nutritionist to determine what type of formula will most benefit them. There are both commercially made formulas as well as recipes for creating your own at home.
The general term for the process of installing a feeding tube is known as “gastrostomy.”
Stamm gastrostomy – the open surgical placement of a tube through an incision in the abdomen. The stomach is sutured to the peritoneum at the exact site.
Janeway gastrostomy – the creation of a permanent gastric fistula by means of a laparoscopic procedure. Laparoscopic refers to a procedure that is a less invasive alternative to open surgery.
Percutaneous Endoscopic Gastrostomy (PEG) – as mentioned above, this is considered a non-surgical method of inserting a feeding tube. The patient needs only mild sedation for this type of procedure.
Complications that sometimes arise from the use of a feeding tube include 1) accidental inhalation of the formula 2) choking 3) bacterial infections 4) organ rupture. These complications are somewhat rare and usually result from improper use or cleaning of the device, but they present enough of a risk to stimulate debate on whether children should be force fed in this manner. Despite the risks, many children with cerebral palsy have benefitted and thrived from an upgrade in their nutritional intake. As long as a serious commitment is made to properly monitor and maintain whatever device is used, you should have no problems.