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Please note: we are
currently in the process of updating this website. Please forgive us for
any links that do not work. Until the new files are ready to go online,
not all the links to publications in the side bar will work. Please
check out the body of this page for the updated publications.
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.
News Flash: The results of the
2010 Survey are now online! Learn more of what we know about children
with Hydranencephaly.
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.
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 |
