This section considers a number of terms widely used in discussions of childhood and in discussions of death. Other concepts are defined and discussed in later chapters (e.g., child- and family-centered care in Chapter 6).


This report uses the terms child and children very generally to cover the age spectrum from birth through the teenage years. Without taking a position in the moral and legal debate over what constitutes personhood, the report also considers efforts to support families facing a prenatal diagnosis of a lethal congenital condition. Further, although it is not the focus of this report, the committee recognizes the grief of parents who suffer the death of an adult daughter or son.

As they move from birth into adulthood, children are constantly changing and developing physiologically, intellectually, and emotionally. Chronological age is often less important than an understanding of a child’s physical, cognitive, emotional, and spiritual development and the medical, social, and other support appropriate to different stages of development.

Definitions of the periods of childhood vary somewhat and reflect a mix of biological and social considerations (see, e.g., Needlman, 2000). In general, a neonate is a child from birth through 4 weeks of age (under 28 days). An infant is a child from 4 weeks of age through the end of the first year of life. (See Chapter 2 for more terminology related to infants and fetuses.) A toddler is often described as a 1 to 3-year old. Preschool children—ages 2 or 3 through 4 or 5 years—are often distinguished from school-age children. An adolescent is sometimes described as a child from 13 through 17 or 19 years of age, but children 10 through 14 may be described as pre- and early adolescents and those 15 through 19 as middle and late adolescents.1 At 18, a person may make his or her own decisions about matters such as health care and advance directives without parental consent. The need for clarity in the definition of age groupings is obvious for statistical comparisons and analyses involving, for example, leading causes of death among different demographic groups.


Some of those involved with adolescent health services identify the transition period to adulthood as extending into the third decade of life (SAM, 1995; Stepp, 2002). The spectrum of pediatric or adolescent care may also be stretched to cover the situation of children with conditions such as congenital heart disease or cystic fibrosis who survive into adulthood and continue to benefit from care and support provided by their pediatric care team.

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