title: Severe congenital anomalies of the kidney and urinary tract: epidemiology can inform ethical decision-making.
abstract: 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.
  
  
  
  Retrospective cohort study of severe cases of CAKUT over 14 years.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, MI, USA.
authors.forename: P
authors.initials: P
authors.lastname: Danziger
authors.affiliation: Department of Obstetrics and Gynecology, University of Michigan, Ann Arbor, MI, USA.|Division of Maternal-Fetal Medicine, University of Michigan, Ann Arbor, MI, USA.
authors.forename: D R
authors.initials: DR
authors.lastname: Berman
authors.affiliation: Department of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, MI, USA.|Division of Pediatric Nephrology, University of Michigan, Ann Arbor, MI, USA.
authors.forename: K
authors.initials: K
authors.lastname: Luckritz
authors.affiliation: Columbia University School of Continuing Education Bioethics Master's Program, New York, NY, USA.
authors.forename: K
authors.initials: K
authors.lastname: Arbour
authors.affiliation: Department of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, MI, USA.|Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI, USA.|Division of Neonatal-Perinatal Medicine, University of Michigan, Ann Arbor, MI, USA.
authors.forename: N
authors.identifier: 0000-0002-8110-7621
authors.initials: N
authors.lastname: Laventhal
mesh_terms: D000025:Abortion, Eugenic / Q000706:statistics & numerical data; D000328:Adult; D003657:Decision Making / Q000941:ethics*; D005260:Female; D005865:Gestational Age; D006801:Humans; D007223:Infant; D066088:Infant Death / Q000209:etiology; D007231:Infant, Newborn; D007668:Kidney / Q000002:abnormalities*; D050498:Live Birth / Q000453:epidemiology; D008297:Male; D010166:Palliative Care / Q000706:statistics & numerical data; D066087:Perinatal Death / Q000209:etiology; D011247:Pregnancy; D011788:Quality of Life / Q000523:psychology*; D012189:Retrospective Studies; D050497:Stillbirth / Q000453:epidemiology; D016216:Ultrasonography, Prenatal; D014551:Urinary Tract / Q000002:abnormalities*; D055815:Young Adult