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Resources in caring for a Child with Hydranencephaly

Physical Care of a Child with Hydranencephaly

Prenatal Diagnosis

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Book: Caring for Your Child With Hydranencephaly

Hydranencephaly data base

 

 

Rays of Sunshine Site Map

Hydranencephaly

Definition of Hydranencephaly
Hydranencephaly Information Front Page
Diagram of the Brain stem
Diagram of the brain in Hydranencephaly
About Hydranencephaly
Cause of Hydranencephaly
Neurological Glossary
 

Hydranencephaly Information Network documents

Hydranencephaly Fact Sheet
Myths about Hydranencephaly
Research Results (comparison of 5 surveys)
A General Overview of children with Hydranencephaly (based on 2006 survey results
Overview of Hydranencephaly Diagrams
Cognitive Development and Awareness in a child with Hydranencephaly
2010 Research results
Dr Shewmon's PaperConsciousness in Congenitally Decorticate children:
Dr Bjorn Merker's paper: Consciousness Without a Cerebral Cortex
Life Expectancy in Hydranencephaly: Guest Editorial by Dr. Bjorn Merker
Survivorship in Hydranencephaly
 

Our Rays of Sunshine

Aaron

Angel Ari
Angel Ben
Angel Blake
Angel Breanna

Angel Caleb
Angel Chase
Angel Chase

Angel Chelsea
Angel Cobyn
Angel Daniel
Angel Elizabeth
Angel Emily
Angel Heather
Angel Isaiah
Angel James
Angel Jason S.
Angel Jayden
Angel Johanna
Angel Kayda & Angel Kayda
Angel Lara
Brandon
Brennan

Carly
Ethan
Kyra
Logan N

 

For New Families

A word of Encouragement
What doctors say and what they may mean

Words of Wisdom
Dear Doctor letter
 

Prenatal Diagnosis of Hydranencephaly

Options you may be given
Experiences of families with prenatal diagnosis
What will life be like for a child with Hydranencephaly
Resources in Caring for a child with Hydranencephaly

Vision
  Cortical Visual Impairment
  Optic Nerve Hypoplasia

Sensory Stimulation Links and Resources
  Sensory Stimulation Activities
  Choosing a Toy
 

Feeding a child with Hydranencephaly
 
Feeding and Positioning
Tube feeding

Tube feeding experiences
Oral feeding experiences
Reflux
Feeding tips and tricks
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