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ABSTRACT
The birth of an infant with a disability is often perceived as the loss of a ''perfect'' baby and is typically an unanticipated event for the mother and family. Mothers may experience self-blame for the disability; therefore, sensitive communication is crucial. A private setting is recommended, with a minimum of health-care professionals in attendance when the diagnosis is revealed. The perinatal educator can guide the mother through the early emotional phases of processing and accepting the new information by offering support and incorporating timely information and interventions. The perinatal educator can also inform and prepare other expectant couples in the childbirth class and encourage them to support the mother and father in celebrating the forthcoming birth. The objective of nursing care for a mother whose infant is newly diagnosed with a disability is to facilitate a positive outcome for her and to promote optimal infant bonding. In all communication and information, replacing the term ''disabled infant'' with ''infant with a disability'' is emphasized in order to recognize the infant first and the disability second.
Journal of Perinatal Education, 17(3), 27-32, doi: 10.1624/105812408X324543
Keywords: infant with a disability, informing parents, prenatal diagnosis, postnatal diagnosis
Shortly after her daughter's birth, Sandra (not her real name) was surprised when the hospital's director of neonatology visited her room and requested permission to administer a blood test on her newborn. The neonatologist said he was ''99% sure'' the baby had a chromosomal abnormality. Sandra looked up in disbelief and suddenly noticed a roomful of medical personnel silently hovering at her bedside and intently watching her after the physician delivered his news.
''What does this mean? Does my baby have Down syndrome?'' Sandra cried. Inwardly panicking and realizing she needed to compose herself as she processed the new information, Sandra closed her eyes and told herself, ''Hold on! Just.. .give yourself a minute of hope.''
Sandra later reflected, ''I was in a medical center-a teaching hospital-and I always allowed residents and medical students before, but I couldn't help wondering, 'Did he have to bring in seven people that day to observe a mother's reaction when she is told there is something wrong with her baby?' He never asked my permission for this audience as my baby was taken away.''