The American Academy of Pediatrics (AAP) is the organization for the education of pediatricians. The AAP provides guidance for the care of groups of children, including children with Down syndrome. This paper represents the most recent installment of guidelines for pediatricians caring for children with Down syndrome. It includes the possibility of the pediatrician being asked to provide counseling during the prenatal period or immediately after birth. Recommendations for care of a child with Down syndrome follow, including newborns, and children up to one month of age, one month to one year, one to five years, and five to 13 years, and adolescents and young adults 13 to 21 years or older.
The National Society of Genetic Counselors (NSGC) is the professional organization for genetic counselors. The NSGC provides guidance for genetic counselors for prenatal and postnatal counseling for parents of a fetus or newborn with Down syndrome. This paper describes Down syndrome and provides resources. It also describes the information that should be included in counseling, such as raising the child, placing the child up for adoption, or pregnancy termination.
This paper is based on an online survey of members of the National Down Syndrome Congress, the National Down Syndrome Society, and the National Society of Genetic Counselors. The survey was completed by 993 parents of children with Down syndrome and 389 genetic counselors. More than half the parents (56.8%) felt they were not sufficiently informed about Down syndrome at diagnosis and 50.5% were somewhat or extremely dissatisfied with the experience of receiving their child’s diagnosis. While genetic counselors valued clinical information, parents appreciated information regarding the abilities and potential of people with Down syndrome.
According to these genetic counselors, the National Society of Genetic Counselors has stronger relationships with abortion service providers than advocacy organizations. The authors state that genetic counselors need relationships with members of the disability community to provide a more balanced view of living with disabling conditions and supporting reproductive choices. They offer suggestions regarding increased involvement of genetic counselors, genetic counseling trainees, and professional organizations with the disability community. They also suggest research to understand the needs of individuals when they receive a diagnosis and how the family adapts.