Ethics and Research with Children: A Case-Based Approach

By Eric Kodish | Go to book overview

14
Research and Innovation in Pediatrie Surgery: The Problem of Hypoplastic Left-Heart Syndrome

Erin Flanagan-Klygis and Joel E. Frader


CASE DESCRIPTION

Mary and John B. are expecting their first child. Mary's pregnancy is at 22 weeks of gestation. The couple has just learned that the fetus Mary carries has a congenital heart defect known as hypoplastic left-heart syndrome (HLHS). Mary's obstetrician suspected a problem on a routine ultrasound examination and then arranged for a more detailed, level 2 ultrasound and prenatal echocardiogram. The couple immediately consults with the cardiologist and cardiothoracic (CT) surgeon at the nearby children's medical center. The cardiologist informs them about the options available when their infant is born. He recommends that, after the delivery, they provide comfort care and allow the baby to die, given the grave prognosis even with surgery. The CT surgeon strongly recommends staged surgical repair, which according to her would result in a good prognosis. According to this surgeon, allowing their infant to die without attempting surgical correction would be “unethical.” Confused, the couple consults with other cardiologists and surgeons across the country, only to find no consensus on the management of HLHS. At some centers, team members believe a staged sequence of operations offers the best chance for survival. Doctors at other centers believe that heart transplantation works best and recommend placing the fetus on a transplant list while still in utero. In some centers, physicians favor a combination of initial surgical palliation followed by transplantation. Yet other groups counsel that they can make no clear recommendation, indicating that not doing surgery and providing comfort care constitutes an acceptable, perhaps preferable option.

When John asked one surgeon at an academic medical center how children do long-term after surgical palliation versus transplantation, the surgeon replied: “We don't really know if one is truly better than the other. We have no long-

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