"The man who has had an experience, is
at the mercy of the man who has only a theory."
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This page was last updated: August 20, 2011
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When our fourth child was born, the doctors gave us a grim, bleak, dismal prognosis.She had spina bifida, and there was an infection in the cyst on her lower back, that is referred to as a "cele". Infections there can involve the entire spinal column, and are frequently the cause of death. They gave her a week or two at most to live, due to her condition, with all of its complicating factors. Based on her CAT scan pictures, she was literally born without a brain . I saw the pictures, and there was only a thin layer of brain "tissue" inside her skull at birth, nothing else. It reminded me of looking at a black void. Based on the CAT scan findings, my husband and I elected not to have her undergo antibiotic therapy or surgery, but just to feed her, care for her, and love her. Her doctors told us that they thought she was blind, knew she was hydrocephalic, paralyzed from the waist down, had a neurogenic bladder, club feet, fused knees, and dislocated hips. She required oxygen during the transfer to the University Hospital. They also predicted that she would "exist" in a vegetative state, never able to know us or to respond to us. We took her home to die surrounded by her loving family. Six weeks later (at my postpartum checkup) the OB doctor who delivered her asked to see her when he found out she was still alive. Not only had she outlived the predicted two weeks, she was definitely responsive and growing. Her eyes were bright, she was able to SEE, and there was no sign of infection in the "cele"! Our angel girl responded to all of us, including her three older siblings. Within hours of bringing her home, we knew that she was able to distinguish between day and night. She strongly disliked not having a nightlight on and would fuss until we complied. She would stare fixedly at a picture of the Last Supper we had hanging on the wall behind the rocking chair where I frequently used to breast feed her, as though she was gaining strength from Jesus just by looking at Him. These were the early days of her life - a fight to live as normally as possible, a fight that would continue for the next 20 years. Our daughter defied all of the odds, and annihilated the "vegetative" prognosis. She touched many, many lives - and left ours with a void that won't be filled until we see her again - whole, healthy, and happy.
V. L. 3-2009