Parents May Make Informed Care Decisions About Newborn Heart Conditions Despite Timing of Diagnosis; Parents Say Decision Capabilities Are Strong Before or After Birth

02/3/2003

PHILADELPHIA, Feb. 3 /PRNewswire/ -- Although coping with their newborn baby's heart disease is always a stressful experience, parents say they are capable of making an informed decision about their baby's care regardless of whether the heart condition is diagnosed before or after the child's birth.

Researchers at The Children's Hospital of Philadelphia interviewed 44 parents of 31 children treated at the Hospital's Cardiac Center who had undergone newborn heart surgery. Of that number, 24 of the parents received a prenatal diagnosis of their child's heart condition, while 20 parents received the diagnosis after the child's birth.

Both groups of parents reported that they were able to make active informed decisions for their babies to undergo heart surgery. "Parents felt they could focus through their stress to actively make an informed decision," said lead author K. Sarah Hoehn, M.D., of the Department of Anesthesia and Critical Care Medicine at The Children's Hospital of Philadelphia. Dr. Hoehn presented the research on Feb. 1 at the Society of Critical Care Medicine annual conference in San Antonio.

The researchers found that fathers in the prenatal diagnosis group had less anxiety and higher optimism, than the fathers of children diagnosed postnatally, while there were no significant differences between both groups of mothers. However, the psychological tests used in the study measured disposition and personality, and did not directly measure the parents' reaction to their child's diagnosis.

Earlier research performed at the Cardiac Center at Children's Hospital suggested that infants benefited from prenatal diagnosis of heart disease, by being more likely to be born in an advanced care nursery and by experiencing fewer seizures than newborns diagnosed after birth. The current study, said Dr. Hoehn, was the first to study how parents' informed consent is related to the timing of the child's diagnosis.

Nearly one of every 100 children is born with a heart defect. Approximately one third of the conditions are life-threatening, requiring parents to make urgent decisions, such as whether to have heart surgery on their newborns. Because of improvements in technology, many of these heart abnormalities can now be detected by echocardiograms during the 18th to 22nd week of pregnancy.

Previous studies of parents of sick newborns have suggested that the stress of making urgent decisions about a sick newborn might diminish the parents' informed consent. "The parents in both groups reported they actively participated in collaborative decisions about their baby, although the prenatally diagnosed group may have had greater understanding of the child's condition," said Dr. Hoehn.

Dr. Hoehn's co-authors, all from The Children's Hospital of Philadelphia, were Gil Wernovsky, M.D., of the Division of Cardiology; Jack Rychik, M.D., Zhiyun Tian, M.D., and Denise Donaghue, M.S.N., of the Fetal Heart Program; J. William Gaynor, M.D. and Thomas L. Spray, M.D., of the Division of Cardiothoracic Surgery; Anne E. Kazak, Ph.D., of the Department of Psychology, Melissa A. Alderfer, Ph.D., of the Department of Pediatrics, and Robert M. Nelson, M.D., Ph.D., of the Department of Anesthesia and Critical Care Medicine.

The Cardiac Center at The Children's Hospital of Philadelphia is a comprehensive center for the care of infants, children and young adults with congenital and acquired heart disease. As a component of the Cardiac Center, the Fetal Heart Program at Children's Hospital specializes in the detection, evaluation and management of congenital heart disease prior to birth. The Fetal Heart Program is one of the largest such programs in the United States, conducting over 1,200 fetal echocardiography studies annually.

Founded in 1855 as the nation's first pediatric hospital, The Children's Hospital of Philadelphia is ranked today as the best pediatric hospital in the nation by a comprehensive Child magazine survey. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children's Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country, ranking second in National Institutes of Health funding. In addition, its unique family-centered care and public service programs have brought the 381-bed hospital recognition as a leading advocate for children and adolescents from before birth through age 19. For more information, visit http://www.chop.edu

Contact: John Ascenzi The Children's Hospital of Philadelphia Ascenzi@email.chop.edu 215-590-7332