These guidelines were written to help families coordinate the health care that may be needed by a child with congenital heart disease. The booklet begins with general information about congenital heart disease. It then discusses the goals of health care, the health care team, the importance of periodic health care, and record keeping procedures. The child's health care needs, development, and educational needs are then examined by age, from birth to age 21. Family support and services are described, including advocacy, human services, schools, family support groups and networks, and recreation. The booklet concludes with a glossary, a list of organizational (primarily in Minnesota) and printed resources for children with congenital heart disease, and a list of more general resources for children with special health care needs. (JDD)