Caring for children with neurodegenerative disorders is challenging, to say the least. Perhaps nothing is more painful than watching a previously "normal" child deteriorate before your eyes as you stand helplessly by. In these syndromes, a child who had rolled over and perhaps was sitting loses the skills he had learned. Older children, previously able to attend school, become unable to participate and then become progressively more dependent. Some children have their brain function robbed suddenly, in an accident, a fire, or by drowning. These conditions share two problems: an increased likelihood to have and die from pneumonia, and the possibility of the child being so severely impaired that he is unable to feel even hunger, thirst, warmth, or love.
Care is exhausting - financially, emotionally, and physically. Respite care may be available in your area. The social worker probably is the best source of information, but do not be afraid to pull out the phone book or check the World Wide Web. Medicaid may have financial help. Asking friends and relatives to come stay for an afternoon or to allow you to get a full night's sleep is a good idea.
At some point, you will probably question whether recurrent hospitalization is helping or harming your child. It is important to find doctors, nurses, and social workers who can help you decide when you have done as much as you can and can help you through the dying. Allowing a child with severely impaired brain function to die naturally of pneumonia can be a loving gesture. It is the most likely cause of death, whether or not treatment is attempted. Symptoms can be controlled, using morphine if needed for breathing discomfort, with the addition of acetaminophen (TylenolTM) for fever and pain. Morphine does not hasten death, but it does help to ensure comfort. Finally, when a dying child has become so ill as to not feel hunger, there is no need to continue with tube or intravenous feedings. Stopping the feedings can enhance comfort by decreasing the amount of secretions your child is struggling with, decreasing the skin breakdown and hygiene needs, and preventing vomiting.
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|Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission.|