Coping With Cephalic DisordersThis section is a place to share stories about Coping With Cephalic Disorders. Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation. You may also Help others by sharing your story. To quickly access health information from your website's browser, download Hydranencephaly - NOT a death sentence! 
I am mother to a beautiful, now 8 year old, daughter who was born with Hydranencephaly. Chrissy was diagnosed with hydran at birth. We adopted her at 7 days of age. We were told she might only live days or weeks. She has proven every doctor wrong on many counts. She has a VP Shunt, does suffer with seizures (controlled by Ketogenic Diet and medications), and has Cortical Visual Impairment. She is in a wheelchair and is non-verbal. But she is very healthy and a happy little girl. She has had no hospitalizations at all in the last three years. She has only been hospitalized once for illness, all other hospital visits were planned procedures. If anyone would like information on caring for a child like Chrissy, please feel free to email me!! I also have a support group on Yahoo (Hydranencephaly-HHH).
January 2009
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