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. 2016 Nov;36(11):954-959.
doi: 10.1038/jp.2016.107. Epub 2016 Jul 28.

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

P Danziger  1 , D R Berman  2   3 , K Luckritz  1   4 , K Arbour  5 , N Laventhal  1   6   7
Affiliations

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

P Danziger et al. J Perinatol. 2016 Nov.

Abstract

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.

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