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Book: Caring for Your Child With Hydranencephaly

Hydranencephaly data base

 

 

 

Welcome to Rays of Sunshine!

This website is the most comprehensive source of  information and support on the Internet available for those who care for someone with  Hydranencephaly.

Welcome to the International Hydranencephaly Website and Support Group. We are a team dedicated to helping families, friends and medical professionals deal with the joys and difficulties of raising a child with Hydranencephaly. We offer not only educational materials but the important human side of Hydranencephaly. Through this website and by joining our support group which is hosted by Yahoo, you can meet the families and children with this rare neurological condition.

June 2013 Please note: This website has undergone major changes and has been moved to a new server. It is still under construction. If you are looking for a page from the previous site and can't find it please email Barb I'll be adding to the site as much as I can over the next little while.

What is Hydranencephaly?

Hydranencephaly is a rare neurological condition in which most of the cerebral hemispheres are absent and replaced with fluid.

Unlike in Anencephaly where the damage to the brain happens at conception, in Hydranencephaly the baby’s brain develops normally until “something” happens to cut off the flow of blood to the baby’s brain. The affected part of the brain then starts to die and the tissue is reabsorbed by the body and replaced with cerebral spinal fluid (CSF). The “something” that cuts off the flow of blood to the baby’s brain can be quite brief.  Some of the most common causes are a stroke in the baby, prenatal drug exposure, and the death of a twin in utero. In many of the children the cause is unknown. The damage to the brain usually occurs in the 2nd or 3rd trimester of pregnancy and can occur up to a year after birth as well.

While the damage to the hemispheres is typically extensive, the child's brainstem is usually (but not always) intact. Since in our experience there does not seem to be any clear relationship between what remains of the hemispheres and the abilities of our children, it seems that they rely largely on their brainstems for relating to their surroundings, for expressing themselves and for their various emotional reactions. Given the highly sophisticated neural mechanisms housed in the brainstem, this is not as surprising as it might seem at first blush. Although it is often thought that someone has to have a cortex in order to be aware and interact with their environment children with Hydranencephaly prove otherwise.

A newborn with Hydranencephaly will look like any other newborn. Their heads may be somewhat enlarged due to Hydrocephalus (a build up of fluid pressure in the skull) but Microcephaly (small head) may also occur. In some cases Hydranencephaly may not be diagnosed for several weeks or months. It can also be diagnosed fairly accurately in utero.

As time goes on, a child with Hydranencephaly may exhibit irritability, feeding difficulties such as gastro esophageal reflux, difficulty with swallowing or sucking, seizures and increased muscle tone. The first year is often very difficult for a child with Hydranencephaly and many die during this time, while others survive and stabilize.  The oldest people we know of with Hydranencephaly are both in their  30s. Some children develop breathing difficulties and may need suctioning and in a few cases children have needed to have a tracheostomy and use a ventilator. Note, however that like other children, no two children with Hydranencephaly are exactly alike. They often differ in how their brain has been affected.  Each child develops individually, with different abilities and difficulties which often change over time.

All of the children we know of can hear and most do so very well, while many are visually impaired.  Most of the children with Hydranencephaly know their family members and are very aware of their surroundings. Many can use their hands to play with toys or activate switches. . Most of them are communicatively responsive, and a few of the children can use several words.  Children with Hydranencephaly often go to school, go for trips on planes, go swimming, to Disney World, etc. In other words they participate in life as does any other child.

For more about Hydranencephaly go to the Hydranencephaly Information Home page

Networking with other families:
In addition to the Yahoo support group we are now on Facebook. Check out the
Rays of Sunshine Information and Support group

Rays of Sunshine Information Page
Rays of Sunshine Angels Group ( a safe place for those who have lost their child with Hydranencephaly to grieve and support one another

Newly updated Publications for 2011:
Hydranencephaly Fact Sheet Brochure

Hydranencephaly Myths Brochure

 

 

 

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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