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How do life-threatening medical conditions in children impact quality of life?
Date:4/12/2011

had to deal with critically ill children, many of whom survived only hours or days. She writes, "The following narratives are not meant to be an explanation of the scientific aspects of predicting and assessing quality of life. The Internet is full of statistics; there are hundreds of medical papers dealing with this. Drs. Payot and Barrington wrote an excellent rigorous review on the subject in this issue. Knowing this literature is very important for health care providers who take care of sick and/or disabled children. Reading the review is good exercise for our heads and brain. The following narratives are meant to exercise heart, gut, and emotions."

A series of personal essays illustrate the many ways that doctors, parents, siblings, and patients have dealt with the issues raised by disabilities of one sort or another. The authors of these tales write about wildly different challenges, in markedly different styles, and offer a variety of insights into their own subjective experiences, from the two-and-one-half hour life of Gabriel, born with a severe heart defect, to the reminiscences of a 60-year-old lawyer who was not supposed to have survived her own childhood.

The mother who struggles with guilt that she didn't do the right things during pregnancy and delivered a one-pound son at 23 weeks gestation, who then lived for eight years.

The brother who remembers his sister, born with Down's Syndrome, and writes of the pliable nature of his memories of her. Now a pediatrician, he uses this experience to counsel others with special needs children.

The doctor who learned something important from the young parents of a boy who would live only a short time: "All they wanted was for their child to love them, to have sex, and to be able to put the pepperoni on the pizza." When he died, "They told him that they loved him very much, that they were grateful they had been parents, his parents, even for only five weeks. And that those five
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Contact: Angelica Kerr
editors-cppah@elsevier.com
Elsevier Health Sciences
Source:Eurekalert

Page: 1 2 3

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