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  • Making a Case for Narrative Competency in the Field of Fetal Cardiology
  • Sarah Chambers (bio) and Julie Glickstein (bio)

Our lives are stories, and the narration of our stories is the essence of human interaction. Narration involves relation with another person and requires both an active narrator and an active listener. Weaving events and emotions together to create a story, our narrating simultaneously weaves teller and listener together. Our story may start simply and then expand to become more complicated. Or it may begin complicated and then resolve, sometimes easily.

Pregnancy is one of health care’s most fundamental stories. Often it is a story that ends happily, with a healthy baby. That healthy baby will, in turn, be the beginning of a new story for its family. Usually, the narrative of pregnancy is relatively uncomplicated. But what happens when that story takes an unexpected twist or a tragic turn? What happens if the story threatens to have an unplanned ending, when expectations for a normal, healthy birth are unfulfilled? How does the story of unfulfilled expectations lead to new and different narratives?

Clinicians in many disciplines of health care have turned to narrative knowledge and practice to improve patient care. So far, the fields that have embraced narrative approaches are primary care nursing and medicine, psychiatry, family medicine, and many forms of clinical social work.1 We present our experience in a sub-sub-specialty of pediatrics—fetal echocardiography—as an example of the reach of narrative medicine practice. Not only do the longitudinal relationships with patients over time require attention to stories, but our practice, even if limited to the nine months of a complicated pregnancy, can be substantially improved by learning the skills and theories of narrative medicine.

The field of pediatric and fetal cardiology was unknown until the middle of the twentieth century when Dr. Abraham Rudolph and [End Page 376] his colleagues embarked upon research studies using fetal lambs to understand the cardiovascular development in the normal fetus and neonate. These studies expanded further to investigate the adaptations in blood flow in the mammalian fetus during gestation and through the transition to neonatal circulation, as well as adaptations to the presence of congenital heart disease.2 In a rapid translational move to yielding applications to human health and disease, these concepts provided the framework for applying noninvasive imaging techniques to establish the field of human fetal cardiology. Fetal echocardiography became a window to the developing heart and allowed us to view a world into which we had never previously been invited; it has become a visual narrative, showing us a previously unseen story of the developing fetus.

Screening for and making the diagnosis of complex congenital heart disease has become part of the mainstream in pediatric cardiology and in maternal and fetal medicine. The technical successes of surgery for complex heart disease in neonates, along with the development of cardiac interventions in the catheterization laboratory have assisted with this growth. Neonates with complex heart disease, who previously did not have a chance of survival, now have an expectation of life; their stories now have more than one possible ending. A prenatal diagnosis of complex congenital heart disease, with or without other anatomic or chromosomal defects, may facilitate the birth of an ultimately healthy child by influencing the peri- and post-natal and medical and surgical management. Such a diagnosis may also lead to medical therapies for the mother or fetus, intrauterine procedures, or an early termination of the pregnancy. The ultimate goal for the pediatric cardiologist is to maximize health and to facilitate medical care delivery to achieve the best possible outcome for the fetus, the mother, and the family.

Thirty years ago, the prognosis of infants and children with complex congenital heart disease was poor. Since that time, the field has evolved to a state in which the majority of babies born with congenital heart disease now survive. But is survival the only outcome to consider? Most babies with complex congenital heart disease will require at least one, if not multiple, corrective open heart surgeries and lifelong medical care. They may have other anatomic or genetic abnormalities that will influence the course of their...


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pp. 376-395
Launched on MUSE
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