The effect of prenatal intervention on postnatal decision-making for infants born with congenital diaphragmatic hernia

Abstract

Objective

To determine the effect, if any, of prenatal intervention in fetuses with congenital diaphragmatic hernia (CDH) on the likelihood of attempted trial of resuscitation (TOR) or withdrawal of life-sustaining measures (WLSM) in the postnatal neonatal intensive care environment.

Study Design

Four hypothetical patients with either left- or right-sided CDH were devised using prognostic survival data from the literature, depending on whether they received fetoscopic endoluminal tracheal occlusion (FETO) or expectant management in the prenatal setting. Healthcare providers from the CDH Study Group (CDHSG) listserv were surveyed to report their likelihood of offering a trial of resuscitation and obliging a parental request for WLSM for each patient. Response data were analyzed using a Wilcoxon rank sum test, and statistical significance was assumed at p < 0.01.

Results

39 complete responses (rate = 19%) were comprised primarily of physicians in pediatric surgery and neonatology, with other healthcare roles and specialties represented. A left-sided CDH patient with prenatal intervention was significantly favored for a TOR when compared to a patient without prenatal intervention (69% vs 11%; p < 0.001). Additionally, there was a lower rate of obliging a parental request for WLSM in the patient with prenatal intervention compared to a patient without (19% vs 64%; p < 0.001). In contrast, there was no observed effect of prenatal intervention in patients with right-sided hernias. In a scenario of simultaneous resource utilization, the patient with a left-sided CDH who underwent prenatal intervention was given priority for a TOR.

Conclusions

To our knowledge, this is the first description of the potential impact of prenatal intervention on postnatal decision-making, using the exemplar case of CDH. These findings have profound implications for maternal-fetal surgery providers and patients, raising concerns of equity and justice and providing preliminary empirical evidence for the fetus as a patient in the era of modern prenatal intervention.

Keywords

congenital diaphragmatic hernia clinical decision-making tracheal occlusion life-sustaining treatment

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