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Book: Caring for Your Child With Hydranencephaly

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Caring For Your Child With Hydranencephaly
Information For Families

This book contains both information and hope for families of children with Hydranencephaly. This is the 2nd edition of our book and is greatly expanded from the first. 

When parents are given the diagnosis of Hydranencephaly for their child they are often told that there is no hope for their child, that the child will never recognize them, and that they won't live long. Unfortunately many children do die at a young age, however many do not. In this book are the stores of over 50 children, some of whom have now gone Home to Heaven but most are still alive and are daily disproving the grim prognoses. As you read the stories you will meet families who are going through experiences that are very similar to yours

This book also contains practical information on caring for your child, with information from various websites along side the personal experiences of families. It is not mean to be a medical textbook, but to provide practical information all in one place. Think of it as a "portable website" 

Some chapter titles are:
What Causes Hydranencephaly
About Hydranencephaly
Sensory Stimulation for your child
Taking Care of You
How to "read" your child
Physical Development of a child with Hydranencephaly
Feeding Your Child

There is also information on the various conditions that often accompany Hydranencephaly such as:
Breathing Support

This 2nd edition of the book is almost 4 times as long as the first one was and contains a lot more information along side personal experiences of families in each of the areas discussed. Due to the length of the book it is being released on cd rather than in print. Parents can then print out just the information that applies to their child at any one time. 

Funds donated in memory of children with Hydranencephaly who have died are being used to give each family 2 copies of the book free of charge. One copy is for personal use and the 2nd is to be given to a professional involved in the care of your child. Further copies are available for a suggested donation of $20

To purchase a copy of the book, please contact Lynne


 Payment can be made through our Paypal account:

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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.

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