Cerebral Palsy: a mother and daughter's agony

Libby Messiah of Fortson, Georgia was not yet 20 years old when her daughter was born with cerebral palsy. "I wasn't stupid, just very young and didn't know what was happening. At one point during my labor they told us she was in distress and had an erratic heart beat but they didn't do anything about it.

With community health you take what you can get - it's the doctor of the day. My doctor said I could be angry at God, but there could be a million reasons why Jamie is like this. So I believed him.

My daughter was born 20 years ago. I was fairly healthy, in great shape and no illnesses, nothing unusual. I went into labor and went to the hospital with my birth coach. The nurse said I was OK. They hooked me up with all the baby spy-ware and doped me up and I had an epidural. My coach was afraid to leave me, even for a minute, because I was so out of it and the epidural freaked me out - it took 40 minutes to do.

I arrived at the hospital at 9am and my daughter Jamie was born about 12 hours later. I had already been induced and the epidural had an odd effect on me: the block went up really high in my body and I couldn't even feel myself breathing, a very weird sensation. I was panting, trying to feel my breath.

When Jamie was born she had an Agpar test (a scale used on newborns to assess their breathing, heart rate, color, etc.) of two. That meant her heart was beating and that was about it; not the most positive thing in the world. I remember them telling me she had to go to the intensive care unit. I was so drugged up, I just said, 'OK, as long as she is fine.' I just saw my baby for a second, all scrunched up. Jamie was in there for 10 weeks. She had surgery and had a gastrostomy tube installed and she has been eating this way her whole life.

Jamie was about one month old and I kept asking the doctors to tell me why she was like this. A geneticist from Sweden told me that, for lack of any other term, it is called cerebral palsy, a "trash-can" diagnosis. When you can't find something specifically wrong, that's what it is called. Now kids are called developmentally delayed.

The doctor in Arizona told me I should consider permanent institution. I told him he could permanently kiss my ass.

She had tight muscles throughout her body, like she was curled up into a little ball. Her ams and legs were crossed. I didn't want to ever have another kid if my body wasn't functioning properly. I had friends with disabilities, so I wasn't ignorant, but I was a new mother. They told me the more severe the mental problems, the more severe the physical challenges. Jamie has an IQ of 26.

By the time she was one, she had spent half her life in the hospital. Luckily, my Mom helped me raise Jamie. I had to move back to Georgia. You can't have a kid this sick without support.

For a number of years we have lived like prisoners, with locks everywhere throughout the house, even on the fridge door. One day Jamie was with a sitter and she drank turpentine.

When she was in distress, when the doctors told me she had an erratic heart beat, why didn't they give me a C-section? After all these years I still think about that. People say to me "Why?" Was that nice doctor telling the 20-year-old kid something just to not question it? So I didn't question anything, which was probably good for me at the time. I've seen women just rage and fall apart.

I've thought about it over the years and was never inclined to sue but I have been paying for it my whole life. Jamie hasn't received social security assistance since she was 18. And I have been stuck here in Columbus, Georgia for more than 20 years. I've been offered jobs in other cities but I can't leave my mother. And Jamie's medical community and school is here.

I know what a normal life is, I remember."