October 19, 2009

What parents of fetuses with congenital defects want from docs

Before and after delivery, the mothers of unborn babies prenatally diagnosed with severe birth defects want doctors to walk a fine line between giving them realistic information—no matter how grim the prognosis—and giving them hope for the best possible outcome.

Results of a small study by neonatologists at Johns Hopkins Children’s Center also show that mothers want to be prepared for all possible scenarios.

The study, described in October’s Pediatrics, is believed to be the first to examine the parent-neonatologist relationship during this highly emotional, and traumatic, period following the diagnosis of such congenital anomalies as tetralogy of Fallot, a severe heart malformation that’s sometimes known as “blue baby” syndrome, or bladder exstrophy, a condition in which the bladder forms abnormally outside the abdomen.

Because neonatologists are the first physicians to take care of these critically ill newborns, they work most closely with parents after what is often a shattering diagnosis with uncertain outcomes.

“With better screening in recent years and improved diagnostic tools, the number of congenital anomalies detected before birth has increased, and so has the burden on physicians to communicate the implications of such devastating news to expectant parents and to tell them what can be and, perhaps more importantly, what cannot be done,” said Pamela Donohue, senior investigator on the study and director of clinical research for the Division of Neonatology.

The Johns Hopkins study of 22 mothers, interviewed before and after delivery, found that what mothers valued most during prenatal consultation was preparation for all possible outcomes and a tour of the Neonatal Intensive Care Unit, an environment that is intensely technological and alien to most parents.

In addition, the mothers said that they wanted a knowledgeable, sensitive and caring physician who is realistic yet optimistic. As one parent put it, “I think you can create realistic expectations, put all the possibilities out on the line and still be able to comfort someone in saying, ‘You know we’re here, and we’re going to manage this case with the expectation of the best possible outcome.’”

Francesca Miquel-Verges, one of the study’s authors and a neonatology fellow at Johns Hopkins at the time it was conducted, said that after delivery, neonatologists should review all the case notes before meeting with the parents, schedule time to sit down with the family, use easy-to-understand language, show sympathy and explain realistically what can be done.

“A lot of these may seem like no-brainers, but in the hustle and bustle of a busy NICU, following through with such care is easier said than done,” said Miquel-Verges, now at the University of Arkansas for Medical Sciences.

Mothers reported that having a sympathetic and compassionate physician was just as important as, or more important than, having one with all the facts. Indeed, textbook knowledge was of little value if the physician came across as cold or lacked empathy, the investigators found.

Another critical element was consistent and coordinated communication about the diagnosis among all health care providers, including neonatologists, obstetricians and specialists such as surgeons and geneticists. Receiving inconsistent or conflicting information damaged parental trust and added to already high anxiety, researchers said.

Co-investigators in the study are S. Lee Woods, Susan W. Aucott, Renee D. Boss and Leslie J. Sulpar.

Related Web sites

Communicating with parents of sick children: