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Feeding a Child With Hydranencephaly

Due to the amount of information on the various aspects of feeding a child with Hydranencephaly, this section is divided into 3 parts:
1. Feeding, Positioning, Difficulties
2. Tube Feeding
3. Gastroesophageal Reflux and it's treatment

Part 1: Feeding, Positioning

Children with Hydranencephaly generally have difficulties swallowing, and sucking. Even if they can swallow and suck it's usually very hard for them, requiring lots of energy. They often also have trouble protecting their airways and have poor gag and cough reflexes. Some children do just fine eating orally. Others though have trouble right from the start. Others eat fine to start with but as they get older aren't gaining weight or are having frequent illnesses. All infections are dangerous for our kids but Aspiration pneumonia, which is caused by food, liquids, or saliva going into and irritating the lungs, is something that you want to avoid if at all possible. In addition to having trouble swallowing, many children with severe neurological problems have problems with something called gastroesophageal reflux. Reflux is something we all do from time to time. However often reflux is severe enough to cause vomiting and gagging. This of course increases the risk of aspiration. For these reasons Drs. & medical professionals often recommend tube feeding. This is where a liquid formula is given to your child via a tube that is inserted through the nose into the stomach (nasal gastric tube) or via a tube surgically inserted directly into the stomach (gastrostomy tube). In my opinion tube feeding has been one of the most important factors in extending and improving the quality of life for children with severe disabilities. In addition to recommending a gastrostomy the Dr may also suggest a surgery called a Nissen Fundoplication. This decreases the risk of reflux.

Before tube feeding is recommended your child will go through a number of tests and assessments. It's never (or should be never) done in a hurry. One thing to remember is that once the tube is removed the hole closes quickly. Therefore once a child has a tube it doesn't mean that he/she will always need a tube. In Krista's case tube feeding helped her to grow strong enough to have the energy to control her swallowing so that she could eat safely.

The following are links to articles about feeding a child with special needs. They are included in the book "Caring for Your Child With Hydranencephaly"

Mealtimes
http://www.novita.org.au/content.asp?p=65 (this link currently isn't working but the page is still there: go to www.novita.org.au, click on site map, then go to near the bottom of the page under disability and click on eating and drinking.

This is an introduction to feeding a child with a disability. Note: itís written for a center in Australia so some of it will not apply to your child, and some of the spelling and terms used are area specific.

I am including links to the following articles as I think they have excellent information regarding the whys and wherefores of general feeding difficulties as well as tube feeding.  They are from the New Visions web site, which has very comprehensive information on anything you might need to know about feeding and swallowing difficulties.  (http://www.new-vis.com ) The articles are by Suzanne Morris. The first article pertains to babies and young children who eat orally and how to tell when they are ready to move onto more solid food.  Many of our children with hydranencephaly do eat orally through much or all of their lives.

Handling And Positioning Pointers
http://www.new-vis.com/fym/papers/p-sens6.htm

Sensory Input And The Mouth:
Partners At Mealtime
http://www.new-vis.com/fym/papers/p-sens4.htm

Changing The Physical Environment
http://www.new-vis.com/fym/papers/p-sens3.htm 

The Body And Mouth: Partners At Mealtime
http://www.new-vis.com/fym/papers/p-sens2.htm

Support And Comfort For The Adult Feeder
http://www.new-vis.com/fym/papers/p-sens1.htm  

Communication At Mealtimes
http://www.new-vis.com/fym/papers/p-lrn3.htm

Expanding Mealtime Communication
http://www.new-vis.com/fym/papers/p-lrn4.htm

Guidelines For Success
Enhancing Infant Readiness For Supplemental Foods
http://www.new-vis.com/fym/papers/p-feed2.htm

Food Progressions For Biting And Chewing
http://www.new-vis.com/fym/papers/p-feed18.htm

Gastrointestinal Health And The Child With Feeding Problems
Part 1: The Issues

http://www.new-vis.com/fym/papers/p-feed16.htm

Gastrointestinal Health And The Child With Feeding Problems
Part 2: Therapy Alternatives

http://www.new-vis.com/fym/papers/p-feed17.htm

When A Child Aspirates
http://www.new-vis.com/fym/papers/p-feed9.htm

Other pages in this section
Tube Feeding
Tube Feeding Experiences
Feeding tips and tricks
Oral Feeding Experiences
Reflux
Feeding Glossary

 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca