Academic journal article Theological Studies

Discernment in the Neonatal Context

Academic journal article Theological Studies

Discernment in the Neonatal Context

Article excerpt

BABY J WAS DELIVERED at 36 weeks and 4 days gestational age with a birth weight of 2638 grams. Delivery was relatively uncomplicated, though at birth Baby J was cyanotic (bluish color of skin from deficient oxygenation of the blood) and had severe tachycardia (increased heart rate) and tachypnea (increased respiratory rate). Baby J was immediately intubated and ventilated with 100 percent oxygen through bag and endotracheal tube. Apgar scores were 4 at one minute and 5 at five minutes. All of this was expected, however, as ultrasonography at 17 weeks revealed that Baby J suffered from hypoplastic left heart syndrome (HLHS).

HLHS consists of a series of cardiac defects including underdeveloped left heart chambers with aortic and mitral valve stenosis (narrowing) and atresia (blockage) and a small ascending aorta.(1) The condition is not associated with abnormalities of other organ systems. HLHS accounts for only 1 to 2 percent of all congenital heart defects, yet it is the most common defect that results in death during the first year of life in the U.S.(2) Without surgery the condition is fatal. The two surgical options for HLHS are reconstructive surgery and transplantation. While these surgical interventions are still considered experimental, recent studies show that infants who undergo either reconstructive surgery or transplantation have a moderate chance at survival.(3) Nevertheless, significant risks are associated with both surgical interventions, and mortality for HLHS remains high.

The uncertainty surrounding the management of HLHS contributes to the difficulty parents experience when deciding the most appropriate course of medical care for newborn infants suffering from the condition.(4) In such situations, parents are compelled to ask themselves, "Should we allow our baby to die free of invasive medical interventions or should we consent to a burdensome surgery that may save our baby's life?" This was the question confronting the parents of Baby J.

The case of Baby J illustrates the complexity of treatment decisions for critically ill newborns. Not only are these decisions difficult from a medical-ethical standpoint given the uncertainty of neonatal medicine, but, more profoundly, from an emotional standpoint given the disappointment and sadness of parents.(5) For months parents wait excitedly and anxiously for the birth of the new person whom they will be entrusted to love and support. They spend time visiting physicians, preparing the nursery, selecting names, and going to birthing classes. Most of the time parental hopes and dreams are realized as a healthy baby is born. Unfortunately, the hopes and dreams of parents are sometimes shattered as their baby is seriously ill, beset with a medical condition or constellation of conditions that endanger their newborn's life. In such cases, parents must comprehend and assimilate medical data supplied by the health care team into their own value assessments, and attempt to decide what is in their baby's overall best interests.(6)

Confusion and doubt frequently encompass parental decisions for critically ill newborns. The uncertainty that parents experience is due in part to the lack of a systematic process of decision making that they can engage in when making life-and-death treatment decisions. Currently, treatment decisions are made in an ad hoc, whatever-the-parents-and-providers-think-best manner.(7) Ethicists and physicians have tried to provide some structure to neonatal decision making by developing ethical standards that delineate criteria from which decisions can be measured.(8) These standards have indeed been helpful, but they too fall short of outlining a clear process of decision making. While some of the uncertainty that characterizes neonatal decision making cannot be avoided, the development of a systematic process of decision making can go a long way toward helping parents in consultation with providers identify salient issues and make careful and compassionate decisions in the neonatal context. …

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