A survivor One of the first calls to come in on the hotline came from Long Island, New York. Her parents refused to consent to surgery, on advice of doctors who told them that without surgery she would quickly die. They had named her Keri-Lynn. She is confined to a wheelchair. Medical experts say that if she had received prompt treatment, she probably would have done even better.
Doctors can surgically close the skin over the spine, and can drain the extra fluid from the brain.
We were doing what we felt was right for our daughter. But finally their hearts softened. The first time I got a reaction smile out of her, we decided to take her home. Thank God it worked out the way it did. But not before a long court battle against the HHS application of the law.