Time of Diagnosis of Babies with Congenital Heart Disease Not a Crucial Factor in Parents' Decision-Making Ability

2/1/2003

From: Katie Lundberg of the Society of Critical Care Medicine, 847-827-7502 or 210-582-7039 (on site) SAN ANTONIO, Feb. 1 -- Parents whose babies are diagnosed with congenital heart disease before birth seem to cope better with the situation than parents who babies are diagnosed at birth, However, those parents whose babies are not diagnosed until after birth are just as capable of making crucial decisions regarding their child's care, according to a study presented today at the 32nd Critical Care Congress of the Society of Critical Care Medicine (SCCM). "We discovered that parents who found out about the diagnosis before birth perceived themselves as less stressed than those who found out after birth and that both groups of parents felt as though they made an authentic decision," said K. Sarah Hoehn, MD. Congenital heart disease occurs in two to three per 1,000 live births. One third of the children with congenital heart disease become critically ill and die or require surgical treatment before their first birthday. When a baby with congenital heart disease is born, parents are faced with a double shock: the severity of the child's illness and the need to make urgent decisions about surgery. Often, a baby will have to be transported to another hospital for the surgery to be performed and this separation can be overwhelming to the new mother. Advances in cardiac imaging mean that abnormalities in the fetal heart can be detected as early as 18 weeks into the pregnancy. While findings can be devastating to the parents when they indicate a condition incompatible with life, early detection of correctable abnormalities can give parents ample time to make the crucial decisions their baby will need them to make. "Our study had two phases," Dr. Hoehn said. "First, we held focus groups with parents who had newborns who had undergone repair of congenital heart defects in the previous year. In the second phase, we enrolled parents before their babies had surgery and they participated in interviews after the babies had surgery." Parents completed psychological testing before their babies underwent surgery. They then were interviewed. Twenty-nine parents, 16 mothers and 13 fathers, whose babies were diagnosed before birth, and 23 parents, 14 mothers and 9 fathers, whose babies were diagnosed at birth, were studied. Fathers whose babies were diagnosed prenatally scored significantly higher on instruments measuring optimism. In addition, fathers whose babies were diagnosed prenatally also had statistically significant less current (state) and baseline (trait) anxiety. Fathers whose babies were prenatally diagnosed were more optimistic and less anxious as measured by psychological instruments. The Society of Critical Care Medicine is the leading professional organization dedicated to ensuring excellence and consistency in the practice of critical care medicine. With over 10,000 members worldwide, the Society is the only professional organization devoted exclusively to the advancement of multidisciplinary, multiprofessional intensive care through excellence in patient care, professional education, public education, research and advocacy. Members of the Society include intensivists, critical care nurses, critical care pharmacists, clinical pharmacologists, respiratory care practitioners and other professionals with an interest in critical care, which may include physician assistants, social workers, dieticians, and members of the clergy.