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Journal of Perinatal Medicine

Official Journal of the World Association of Perinatal Medicine

Editor-in-Chief: Dudenhausen, MD, FRCOG, Joachim W.

Ed. by Bancalari, Eduardo / Chappelle, Joseph / Chervenak, Frank A. / D'Addario , Vincenzo / Genc, Mehmet R. / Greenough, Anne / Grunebaum, Amos / Konje, Justin C. / Kurjak M.D., Asim / Romero, Roberto / Zalud, MD PhD, Ivica


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1619-3997
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Volume 45, Issue 5

Issues

Evidence-based, ethically justified counseling for fetal bilateral renal agenesis

Alana N. Thomas
  • Corresponding author
  • Baylor college of Medicine, Texas Children’s Hospital, Department of Pediatrics, Section of Neonatology, 6621 Fannin St, WT-6104, Houston, TX 77030, USA
  • Email
  • Other articles by this author:
  • De Gruyter OnlineGoogle Scholar
/ Laurence B. McCullough
  • Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA
  • Department of Obstetrics and Gynecology, Weill Medical College of Cornell University, New York, NY, USA
  • Other articles by this author:
  • De Gruyter OnlineGoogle Scholar
/ Frank A. Chervenak
  • Department of Obstetrics and Gynecology, Weill Medical College of Cornell University, New York, NY, USA
  • Other articles by this author:
  • De Gruyter OnlineGoogle Scholar
/ Frank X. Placencia
  • Department of Pediatrics, Section of Neonatology, Baylor College of Medicine, Texas Children's Hospital, Houston, TX, USA
  • Other articles by this author:
  • De Gruyter OnlineGoogle Scholar
Published Online: 2017-02-21 | DOI: https://doi.org/10.1515/jpm-2016-0367

Abstract

Background:

Not much data are available on the natural history of bilateral renal agenesis, as the medical community does not typically offer aggressive obstetric or neonatal care asbilateral renal agenesis has been accepted as a lethal condition.

Aim:

To provide an evidence-based, ethically justified approach to counseling pregnant women about the obstetric management of bilateral renal agenesis.

Study design:

A systematic literature search was performed using multiple databases. We deploy an ethical analysis of the results of the literature search on the basis of the professional responsibility model of obstetric ethics.

Results:

Eighteen articles met the inclusion criteria for review. With the exception of a single case study using serial amnioinfusion, there has been no other case of survival following dialysis and transplantation documented. Liveborn babies die during the neonatal period. Counseling pregnant women about management of pregnancies complicated by bilateral renal agenesis should be guided by beneficence-based judgment informed by evidence about outcomes.

Conclusions:

Based on the ethical analysis of the results from this review, without experimental obstetric intervention, neonatal mortality rates will continue to be 100%. Serial amnioinfusion therefore should not be offered as treatment, but only as approved innovation or research.

Keywords: Amnioinfusion; beneficence; bilateral renal agenesis; clinical decision making; counseling; ethics; fetal; neonatal; obstetric; perinatal

References

  • [1]

    Hindryckx A, De Catte L. Prenatal diagnosis of congenital renal and urinary tract malformations. Facts Views Vis Obgyn. 2011;3:165–74.Google Scholar

  • [2]

    Rodriguez MM. Congenital anomalies of the kidney and the urinary tract (CAKUT). Fetal Pediatr Pathol. 2014;33: 293–320.Web of ScienceGoogle Scholar

  • [3]

    Clayton DB, Brock JW 3rd. In utero intervention for urologic diseases. Nature Rev Urol. 2012;9:207–17.Google Scholar

  • [4]

    Wiesel A, Queisser-Luft A, Clementi M, Bianca S, Stoll C. Prenatal detection of congenital renal malformations by fetal ultrasonographic examination: an analysis of 709,030 births in 12 European countries. Eur J Med Genet. 2005;48:131–44.Google Scholar

  • [5]

    Langer JC. Prenatal diagnosis of congenital anomalies. What can and should be done? Can Fam Physician. 1993;39:595–602.Google Scholar

  • [6]

    Wilkinson D, de Crespigny L, Xafis V. Ethical language and decision-making for prenatally diagnosed lethal malformations. Semin Fetal Neonatal Med. 2014;19:306–11.Google Scholar

  • [7]

    Perez-Brayfield MR, Kirsch AJ, Smith EA. Monoamniotic twin discordant for bilateral renal agenesis with normal pulmonary function. Urology 2004;64:589.e1–e2.Google Scholar

  • [8]

    Bienstock JL, Birsner ML, Coleman F, Hueppchen NA. Successful in utero intervention for bilateral renal agenesis. Obstet Gynecol. 2014;124:413–5.Google Scholar

  • [9]

    Song KM. Survival of Rep. Herrera Beutler’s child a celebrated case study. Seattle, Washington: The Seattle Times; 2014.Google Scholar

  • [10]

    Johnson A, Luks FI. A cautionary note on new fetal interventions. Obstet Gynecol. 2014;124:411–2.Web of ScienceGoogle Scholar

  • [11]

    Slickers JE, Olshan AF, Siega-Riz AM, Honein MA, Aylsworth AS. Maternal body mass index and lifestyle exposures and the risk of bilateral renal agenesis or hypoplasia: the National Birth Defects Prevention Study. Am J Epidemiol. 2008;168:1259–67.Google Scholar

  • [12]

    Davis EM, Peck JD, Thompson D, Wild RA, Langlois P. Maternal diabetes and renal agenesis/dysgenesis. Birth Defects Res A Clin Molec Teratol. 2010;88:722–7.Google Scholar

  • [13]

    Kumar M, Sharma S, Bhagat M, Gupta U, Anand R, Puri A, et al. Postnatal outcome of congenital anomalies in low resource setting. Prenat Diagn. 2013;33:983–9.Web of ScienceGoogle Scholar

  • [14]

    Wang Y, Hu J, Druschel CM, Kirby RS. Twenty-five-year survival of children with birth defects in New York State: a population-based study. Birth Defects Res A Clin Molec Teratol. 2011;91:995–1003.Google Scholar

  • [15]

    Stojanovic J, Thwin T, Bythell M, Harigopal S. Prevalence and 1 year outcome of severe congenital renal anomalies. Arch Dis Child Fetal Neonatal. 2011;96:Fa18–9.CrossrefGoogle Scholar

  • [16]

    Robbins JM, Bird TM, Tilford JM, Cleves MA, et al. Hospital stays, hospital charges, and in-hospital deaths among infants with selected birth defects–United States, 2003. Centers for Disease Control and Prevention. MMWR Morb Mortal Wkly Rep. 2007;56:25–9.Google Scholar

  • [17]

    Mehler K, Beck BB, Kaul I, Rahimi G, Hoppe B, Kribs A. Respiratory and general outcome in neonates with renal oligohydramnios – a single-centre experience. Nephrol Dial Transplant. 2011;26:3514–22.Google Scholar

  • [18]

    Melo BF, Aguiar MB, Bouzada MC, Aguiar RL, Pereira AK, Paixao GM, et al. Early risk factors for neonatal mortality in CAKUT: analysis of 524 affected newborns. Pediatr Nephrol. 2012;27:965–72.CrossrefWeb of ScienceGoogle Scholar

  • [19]

    Grijseels EW, van-Hornstra PT, Govaerts LC, Cohen-Overbeek TE, de Krijger RR, Smit BJ, et al. Outcome of pregnancies complicated by oligohydramnios or anhydramnios of renal origin. Prenat Diagn. 2011;31:1039–45.Web of ScienceGoogle Scholar

  • [20]

    Spiro JE, Konrad M, Rieger-Fackeldey E, Masjosthusmann K, Amler S, Klockenbusch W, et al. Renal oligo- and anhydramnios: cause, course and outcome-a single-center study. Arch Gynecol Obstet. 2015;292:327–36.Web of ScienceGoogle Scholar

  • [21]

    Damen-Elias HA, De Jong TP, Stigter RH, Visser GH, Stoutenbeek PH. Congenital renal tract anomalies: outcome and follow-up of 402 cases detected antenatally between 1986 and 2001. Ultrasound Obstet Gynecol. 2005;25:134–43.Google Scholar

  • [22]

    Ulkumen BA, Pala HG, Baytur YB, Koyuncu FM. Outcomes and management strategies in pregnancies with early onset oligohydramnios. Clin Exp Obstet Gynecol. 2015;42:355–7.Google Scholar

  • [23]

    Nagase H, Ishikawa H, Nishikawa T, Kurosawa K, Itani Y, Yamanaka M. Prenatal management of the fetus with lethal malformation: from a study of oligohydramnios sequence. Fetal Pediat Pathol. 2011;30:145–9.CrossrefGoogle Scholar

  • [24]

    Garne E, Loane M, Dolk H, Barisic I, Addor MC, Arriola L, et al. Spectrum of congenital anomalies in pregnancies with pregestational diabetes. Birth Defects Res A Clin Mol Teratol. 2012;94:134–40.Google Scholar

  • [25]

    Kumar M, Thakur S, Puri A, Shukla S, Sharma S, Perumal V, et al. Fetal renal anomaly: factors that predict survival. J Pediatr Urol. 2014;10:1001–7.Web of ScienceCrossrefGoogle Scholar

  • [26]

    Cameron D, Lupton BA, Farquharson D, Hiruki T. Amnioinfusions in renal agenesis. Obstet Gynecol. 1994;83:872–6.Google Scholar

  • [27]

    Chervenak FA, McCullough LB, Brent RL. The professional responsibility model of obstetrical ethics: avoiding the perils of clashing rights. Am J Obstet Gynecol. 2011;205:315.e1–5.Web of ScienceGoogle Scholar

  • [28]

    Chervenak FA, McCullough LB, Brent RL. The professional responsibility model of physician leadership. Am J Obstet Gynecol. 2013;208:97–101.Web of ScienceGoogle Scholar

  • [29]

    Babbitt KE, Bailey KJ, Coverdale JH, Chervenak FA, McCullough LB. Professionally responsible intrapartum management of patients with major mental disorders. Am J Obstet Gynecol. 2014;210:27–31.Web of ScienceGoogle Scholar

  • [30]

    Chervenak FA, McCullough LB. The professional responsibility model of perinatal ethics. Berlin, Boston: Walter de Gruter GmbH; 2014.Google Scholar

  • [31]

    Kerecuk L, Schreuder MF, Woolf AS. Renal tract malformations: perspectives for nephrologists. Nat Clin Pract Nephrol. 2008;4:312–25.CrossrefGoogle Scholar

  • [32]

    Scott JE. Fetal, perinatal, and infant death with congenital renal anomaly. Archiv Dis Child. 2002;87:114–7.Google Scholar

  • [33]

    Chervenak FA, McCullough LB. A comprehensive ethical framework for fetal research and its application to fetal surgery for spina bifida. Am J Obstet Gynecol. 2002;187:10–4.Google Scholar

  • [34]

    Biffl WL, Spain DA, Reitsma AM, Minter RM, Upperman J, Wilson M, et al. Responsible development and application of surgical innovations: a position statement of the Society of University Surgeons. J Am Coll Surg. 2008;206:1204–9.Web of ScienceGoogle Scholar

About the article

Corresponding author: Alana N. Thomas, MD, Baylor college of Medicine, Texas Children’s Hospital, Department of Pediatrics, Section of Neonatology, 6621 Fannin St, WT-6104, Houston, TX 77030, USA, Tel.: + (832) 826-1380, Fax: + (832) 825-1386


Received: 2016-11-15

Accepted: 2016-12-28

Published Online: 2017-02-21

Published in Print: 2017-07-26


Author’s statement

Conflict of interest: Authors state no conflict of interest.

Material and methods: Informed consent: Informed consent has been obtained from all individuals included in this study.

Ethical approval: The research related to human subject use has complied with all the relevant national regulations, and institutional policies, and is in accordance with the tenets of the Helsinki Declaration, and has been approved by the authors’ institutional review board or equivalent committee.

Funding source: Neonatology Evangelina “Evie” Whitlock Award, Texas Children’s Hospital Neonatology “Bad Pants” Fund, and NIH grant K23HD076938; the sponsors had no involvement in study design or in the collection, analysis and interpretation of data.

Clinical trials registration: Not applicable.


Citation Information: Journal of Perinatal Medicine, Volume 45, Issue 5, Pages 585–594, ISSN (Online) 1619-3997, ISSN (Print) 0300-5577, DOI: https://doi.org/10.1515/jpm-2016-0367.

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