Severe congenital anomalies of the kidney and urinary tract: epidemiology can inform ethical decision-making

Objective:decision-making for pregnancies complicated by severe congenital anomalies of the kidneys and urinary tract (cakut) are ethically challenging, partly because the outcomes are not well studied.study design:retrospective cohort study of severe cases of cakut over 14 years.results:seventy-one of the 108 cases could be completely analyzed. forty-six percent (n=33) infants were live-born; one-third (n=11) survived to 12 months. twice as many non-surviving infants received a trial of therapy vs comfort care only. two-thirds of non-survivors who received a trial of therapy died within the first 9 h of life. live-born infants faced morbidities such as pneumothorax and neonatal dialysis.conclusions:over half of pregnancies complicated by severe cakut ended in termination or stillbirth, but one-third of live-born infants survived to 12 months and the majority of non-survivors died within hours. this may allay concerns about prolonged and futile intensive care for parents considering a trial of therapy.