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Please join us in finding out more of the
characteristics of a child with Hydranencephaly by taking our new survey.
Everyone is welcome to fill it out even if you've already done the previous
surveys. This one is much shorter so should only take you a few minutes to do.
Thank you.
Hydranencephaly Message Board: It is
hoped this will be an easy way for people to ask questions and find information
on a wide variety of topics relating to caring for a child with Hydranencephaly.
Check it out at:
http://hydranencephaly1.proboards.com/
video footage of
children with Hydranencephaly
The Memorial Quilt is now our Rays of
Sunshine Quilt, which shows the beauty of the tapestry of our children.
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.
Christian
Carly
Will
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.
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 person we know of
with Hydranencephaly is in her late 20s. 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 information on the physiology of
Hydranencephaly
For a list of publications we've
created about Hydranencephaly
To read the stories of "Our Rays of Sunshine"
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