Gastrostomy tube (G-tube) for SMA | mySMAteam

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The gastrostomy tube (G-tube) is a flexible feeding tube surgically inserted through the abdominal wall and directly into the stomach. It bypasses the mouth and esophagus, delivering food, liquid, and medications directly into the stomach. A G-tube is one type of feeding support for people with spinal muscular atrophy (SMA) who cannot chew or swallow due to muscle weakness and are at risk of aspirating (inhaling) food into the lungs.

G-tubes are more permanent feeding solutions. The decision to place one may be difficult for families of children with SMA. Health care providers will often explore potential outcomes with families to improve decision-making conversations and support.

What does it involve?
A G-tube may be inserted surgically through an incision on the abdomen or endoscopically - from inside the body using a small, flexible tube with a light and camera).

The most common – and least invasive – method is called percutaneous endoscopic gastrostomy (PEG). A scope is threaded down the throat and esophagus, and into the stomach, to help a surgeon find the best location for the tube. An opening or channel is created inside the body, between the abdominal wall and stomach, where the tube will be inserted.

Once opened, the top of the tube can be pulled up and out of the stomach through this opening, and secured to the skin with tape. The bottom part, which is shaped like a bulb, remains inside the stomach and prevents the tube from coming out.

The tube (also called a “long” or PEG tube) remains in place for eight to 12 weeks post-surgery while the tract between stomach and abdomen heals. After that, the current tube can be replaced with a new long tube, or a more comfortable, low-profile device known as a gastrostomy feeding button.

Instead of a long tube permanently attached outside the stomach, the button lies flat against the skin. An “extension set” can be attached to the button for feedings and medication, and disconnected when not in use.

There are two types of buttons - balloon buttons and non-balloon buttons.

Balloon buttons are the most common device used in children, these buttons are anchored inside the stomach by a water-filled balloon. They can be changed at home by a trained parent or caregiver.

Non-balloon buttons are harder to pull out than balloon buttons and cannot be replaced at home. They’re placed in the doctor’s office or at the hospital, sometimes with sedation or a topical pain reliever.

Most endoscopic procedures take 30 to 45 minutes under local anesthesia. People can usually go home the day of the procedure or the next day.

Clear liquids are initially fed through the tube, followed by specialized liquid nutrition and fluids a few days later. A dietician can help plan a specific diet and schedule based on an individual’s personal nutrition needs. During follow-up visits, weight and tube placement/condition will be checked.

Before leaving the hospital, a healthcare professional will teach parents or a family member how to administer feedings, care for the tube, and check for problems. A visiting nurse may be able to provide in-home care until you’re comfortable managing tube care and feedings.

People with chewing problems may still be able to eat and drink by mouth in addition to using a G-tube. If the tube is placed due to difficult swallowing, restrictions on oral intake will remain.

Intended outcome
The main goals of G-tubes are to provide feeding, hydration, and medication directly into the stomach when an individual is unable to eat enough food by mouth. The G-tube helps deliver enough calories and nutrients to support growth.

Typically recommended for people who need nutritional support on a long-term or permanent basis, G-tubes may improve strength and energy, prevent weight loss, and boost the immune system.

A systematic review of qualitative studies found positive physical benefits of G-tube feeding for children with SMA. Benefits included weight gain, improved respiratory status, and a safe delivery system for fluids and medications.

Any surgery carries risks including blood clots, blood loss, infection, breathing problems, reactions to medication, and heart attack or stroke during the surgery. Common complications of G-tube procedures include pain, infection, bleeding or leakage of stomach contents around the tube site.

Reflux accompanied by chronic vomiting and motility issues can develop after G-tube surgery. When this happens, a gastro-jejunal tube (GJ-tube) may be recommended.

Those who develop severe, life-threatening reflux after G-tube surgery may be candidates for a G-tube with Nissen fundoplication.

Other risks of G-tube placement can include aspiration (inhalation of food and liquid into lungs), gastrointestinal complications including diarrhea, constipation and reflux, continual vomiting or diarrhea, trouble passing gas, and perforation (tear) in the bowel wall.

Because they can become clogged or break down over time, G-tubes must be replaced. A long G-tube usually lasts more than a year and can be replaced without surgery. Buttons must be replaced every four months. Movement and pulling on the tube site should be minimized to prevent trauma and leakage.

For more details, visit:
1. Understanding Percutaneous Endoscopic Gastrostomy (PEG) ー American Society for Gastrointestinal Endoscopy
2. Gastronomy Tubes – Feeding Tube Awareness Foundation
3. Family Experiences With Feeding Tubes in Neurologic Impairment: A Systematic Review ー Journal of the American Academy of Pediatrics
4. Gastronomy Tubes ー UCSF Department of Surgery
5. The Gastrostomy Button (G-Button) ー University of Iowa Stead Family Children’s Hospital
6. When Is It Time for A G-Tube? – NBIA Cure
7. Pediatric Gastrostomy (G-Tube) for Intestinal Transplant Patients ーChildren’s Hospital of Pittsburgh
8. Spinal Muscular Atrophy ーMuscular Dystrophy Association

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