Kayda with her purple dino in 1994 

Remembering our beginnings

In May 1993, I learned that I was finaly going to be a mom to a beautiful 4 year old named Kayda. When I met her I knew she was severely disabled. That was ok. I'd always wanted to care for a child with a disability. I just thought she had cp. Then when I started getting reports for her in preparation for registering her for Kindergarten in the fall, I started seeing on the diagnosis line: hydranencephaly. Well, I'd never heard of that. So at first I put hydrocephaly on her form, then anencephaly. I knew what those were, but also knew that children with anencephaly didn't live.

After Kayda came to live with me, I started going through a pile of papers that her foster mom had sent with her. In it was a one page photocopied part of a medical textbook. Underlined, was the condition Hydranencephaly. It said very little. Only that the child would be in a permanent vegetative state and would die by the age of 1. Well, Kayda was 4. Her hold on life was tenuous at best with 6 aspiration pneumonias in the last 8 months and a DNR order in place. I decided to ignore and try to forget that dismal explanation of hydranencephaly. I also made a grave mistake, I shared that description with her new schooll staff. That led them to question why they should allow Kayda to attend school thus taking away resources from kids who "mattered". That simple page is likely why I had to fight so hard to get them to include her.

I soon learned that, once she was healthy, Kayda didn't quite fit the description of being in a permanent vegetative state as I'd known it. Hmmmmmm!!! someone's wrong. Was it just me being out of touch with reality and seeing what I wanted to see? But, everyone we met soon saw Kayda reaching out with her hands to touch things, compare textures and chew on her pink dinosaur named Bruce. I guess we were all in denial.

In 1996 I first got internet access. The first thing I did was do a search on Hydranencephaly. I got almost nothing and what I did get was very dismal, including a paper on the morality of keeping a child with hydranencephaly alive to use them as organ donors. I left notes on any disorder matching board I could find. Slowly I started hearing from other families of children with Hydranencephaly.

By that time Kayda was a vibrant happy child who was very alert and aware of her surroundings. I thought that was unusual for a child who should be in a vegetative state. As I met other families I learned that their children too were just as alert and aware as Kayda. We were all under the impression that there were very few children with this condition alive in the world at one time. I thought there wasn't even a point in a website or mailing list but went ahead any ways. April 4 1998 our first website went online. Our mailing list was started with 8 families at the end of Sept. 1998.

Well,amazingly, we discovered that our kids weren't alone in their awareness and alertness and that there were far more children with this condition than we'd realized. Now, 2005, we have over 150 families on the mailing list, 60 stories of children on our website and have been in contact with at least 200 families in total. Amazing!!!!!

Yes, some of the children are less alert than others, and unfortunately they all die too young. But we all know now that children with hydranencephaly aren't necesarily in a vegetative state. AS I always said about Kayda "no one told her that".

Good idea

Good idea Kammy. This should be interesting.