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.