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Terminology
The terminology to define or describe a birth-related brain injury can be confusing. The words are generally so technical, with so many syllables, that to ordinary people like your family and our families, just hearing the sounds, without yet understanding the meaning, can be frightening without anything more. Our hope is that we can reduce the confusion and fear, and impart understanding and knowledge.
You may well hear many different diagnoses and descriptions of your child’s injuries. A few of them are: cerebral palsy; hypoxic ischemic encephalopathy (HIE), neonatal seizures, neonatal depression; brain injury due to lack of oxygen or trauma, or periventricular leukomalacia (PVL). But more often than not you will simply be told, “Your child has some brain damage. We just don’t know what happened, when it happened or why it happened.”
The “expensive” words of medical terminology often act as a barrier to knowledge. The mere fact the doctor uses them without taking the time to translate the terms into plain English, and in a tone of voice or with an attitude that says if you were just listening closely enough you would understand, can make a parent feel inferior somehow for not understanding. And as we all know, all too often we don’t want to embarrass ourselves by admitting ignorance and asking for an explanation. So when the mechanic says the problem with the engine is that the doo-flotchy isn’t connecting properly with the flummock, we nod wisely and authorize the repair.
Never nod wisely when a doctor says something you don’t understand about your child’s condition. Ask what the doctor means, and keep on asking until you have a firm grip on the meaning. You cannot provide effective care for your child, much less the excellent care you want to provide, unless you know what is wrong, what happened, what needs to be done now, and what the future holds.
One goal of our support group and of this Web site is to help you through the difficult time you face now, and the difficult times you will inevitably face later. So be strong, ask questions and never be afraid to ask for help—from your health care team or from others like us who have been in your shoes.