When our small group of 8 families first started to correspond in 1998, there was almost no in-formation available either online or in print about Hydranencephaly. What information there was, was not hopeful. And, many of the families that found us told of their child not being given shunts to control hydrocephalus and not being given life extending treatments such as the use of a tracheosotmy or ventilator.
Much has changed: Our small group has grown to 2 groups with contact with over 400 families. Now it is rare to hear of a child being denied a shunt and many of the children have had quality lives with the use of a tracheostomy or ventila-tor. And, now when you search for Hydranen-cephaly online you will find a lot of different in-formation, most of what has come out of my contact with the families and the results of our informal research.
More and more children with Hydranencephaly are living longer quality lives now. The biggest factor in this is the loving quality care they re-ceive from their families or primary caregivers. And, although the general websites still state that children with Hydranencephaly die by the age of 1, our information shows that only 16% of the children die in their first year.
Our journey in learning about Hydranencephaly
Hydranencephaly Information Network
information is the key to hope
11634 203 st.
Maple Ridge BC
Hydranencephay Information Network
An important part of encouraging and supporting families is the publications and information coming from what is called The Hydranencephaly Information Network. Over the years several different pamphlets and informational papers have been created.