Your child’s primary physician will monitor weight gain as an indicator of adequate nutrition. A dietician can offer supplements given by mouth or tube to increase calories. A speech therapist will assess swallowing and suggest modifications to continue a diet by mouth. A radiologist can assess for aspiration—when what is swallowed goes into the lungs instead of down the esophagus. A gastroenterologist can help investigate and manage problems with feeding and digestion. Complex care and palliative care clinicians can help identify and weigh the factors surrounding use of feeding tubes.
Feeding Tubes
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Some children with SNI never have the ability to eat by mouth, and questions about a feeding tube arise early in life. Others will eat by mouth for years, and then develop problems with swallowing or not eating enough, which can lead to weight loss or lung infections. Though the age when these changes occur can vary, understanding what nutritional or gastrointestinal needs may arise, and knowing the clinicians who can support you, will give you confidence as you manage and make decisions about your child’s nutritional needs.
A feeding tube is used when a child can’t take in enough food or safely swallow because of an illness or chronic health condition. The tube allows nutrients to go into the body through a small flexible tube without having to be swallowed. In most cases, a feeding tube delivers food into the stomach, but in some cases the tube delivers nutrition into the small intestine in order to avoid problems with vomiting or reflux. Some children with SNI will be fed exclusively by feeding tube. Others fed by feeding tube are able to continue to take food by mouth for taste and pleasure. A speech therapist and radiologist will assess what foods can be safely swallowed. The choices to use a feeding tube and/or allow food by mouth may change over time.
There are many different types of feeding tubes.
G-tube (gastronomy tube)
GJ tube (gastrostomy-jejunostomy tube)
J-tube (jejunostomy tube)
NJ tube (nasojejunal tube)
NG tube (nasogastric tube)
The question of whether to allow a feeding tube is often one of the most emotional ones for a caregiver who considers feeding their child one of their most important responsibilities. The medical team can help you anticipate what you can expect with or without the tube, so that you can arrive at a decision that feels right for your child and family. It is helpful to take time to discuss what impact the tube might have on your family’s and child’s overall quality of life. Does it take a long time to feed your child–time that you could be spending together in other ways? Will a feeding tube help your child have more energy and be more comfortable? Will it make the delivery of critical medications easier, faster, more effective? Will a feeding tube will cause discomfort and agitation, prolonging the suffering of the child?
Sometimes clinicians use language that needs to be explored; for example, they suggest that your child “needs” a feeding tube placement. Remember that the need is determined by your goals, so make certain that your clinical team can clarify what the goals are that a feeding tube will accomplish.
