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A Rare Sporadic Polymalformative Syndrome with Congenital Abdominal Wall Defects. Caregivers and Parents Working Together Make Shared Ethical Decisions

Received: 10 April 2017     Accepted: 8 May 2017     Published: 18 October 2017
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Abstract

Improvements in ultrasound technology and the appropriate timing of antenatal ultrasound has led to refined prenatal diagnosis and enhanced accuracy of diagnosis of fetal anomalies and makes it possible to treat or not at birth, because they have diverse etiology and prognosis. They has severe congenital common finding as thoracoabdominal defects, spinal cord abnormalities, positional limb deformities, abnormalities of umbilical cord and ectopia cordis. The technological revolution and radical new treatment modalities in patient care cause ethical dilemmas when therapeutic possibilities are very varied. Healthcare workers at all levels of care, after detection of fetal defects need to get involved to provide better family management to reduce pain and suffering. Avoid a futile treatment is ethical obligation since the time of Hippocrates.

Published in American Journal of Pediatrics (Volume 3, Issue 5)
DOI 10.11648/j.ajp.20170305.13
Page(s) 42-45
Creative Commons

This is an Open Access article, distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution and reproduction in any medium or format, provided the original work is properly cited.

Copyright

Copyright © The Author(s), 2017. Published by Science Publishing Group

Keywords

Body Stalk Anomaly, Thoracoabdominal Syndrome, Pentalogy of Cantrell, Amniotic Band Syndrome, Bioethics, Palliative Care

References
[1] Hunter, A. G. W., Seaver, L. H. and Stevenson, R. E. (2011), Limb–body wall defect. Is there a defensible hypothesis and can it explain all the associated anomalies?. Am. J. Med. Genet., 155: 2045–2059. doi:10.1002/ajmg.a.34161.
[2] Routhu M, Thakkallapelli S, Mohan P, Ahmed N. Role of Ultrasound in Body Stalk Anomaly and Amniotic Band Syndrome. International Journal of Reproductive Medicine. 2016; 2016: 3974139. doi:10.1155/2016/3974139.
[3] Quijano FE, Rey MM, Echeverry M, Axt-Fliedner R. Body Stalk Anomaly in a 9-week Pregnancy. Case Reports in Obstetrics and Gynecology. 1 -4. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/25105039.
[4] Lockwood CJ, Scioscia AL, Hobbins JC. Congenital absence of the umbilical cord resulting from maldevelopment of embryonic body folding. Am J Obstet Gynecol 1986; 155:1049.
[5] Carmi, R., Parvari, R., Weinstein, J. Mapping of an X-linked gene for ventral midline defects (the TAS gene). (Abstract) Am. J. Hum. Genet. 53 (suppl.): A984, 1993.
[6] Parvari, R., Weinstein, Y., Ehrlich, S., Steinitz, M., Carmi, R. Linkage localization of the thoraco-abdominal syndrome (TAS) gene to Xq25-26. Am. J. Med. Genet. 49: 431-434, 1994.
[7] Kaouthar H, Jihen A, Faten J, et al. Cardiac anomalies in Cantrell’s pentalogy: From ventricular diverticulum to complete thoracic ectopia cordis. Cardiologie tunisienne. 2013;9(1):94-97.
[8] Tsakayannis DE, Zurakowski D, Lillehei CW. Respiratory insufficiency at birth: a predictor of mortality for infants with omphalocele. J Pediatr Surg. 1996 Aug;31(8):1088-90.
[9] Sankaran K, Hedin E, Hodgson-Viden H. Neonatal end of life care in a tertiary care centre in Canada: a brief report. CJCP, 2016, 18(5): 379-385.
[10] Einaudi MA, Le Coz P, Malzac P, et al. Parental experience following perinatal death: exploring the issues to make progress. Eur J Obstet Gynecol Reprod Biol, 2010, 151(2): 143-148.
[11] Tom L. Beauchamp y James F. Childress, Principles of Biomedical Ethics Fourth Edition, Oxford University Press, 1994.
[12] Carol Gilligan, In a Different Voice: Psychological Theory and Women’s Development, Harvard University Press, Cambridge, 1982.
Cite This Article
  • APA Style

    Eduardo Alfredo Duro, Maria Eva Pereyra. (2017). A Rare Sporadic Polymalformative Syndrome with Congenital Abdominal Wall Defects. Caregivers and Parents Working Together Make Shared Ethical Decisions. American Journal of Pediatrics, 3(5), 42-45. https://doi.org/10.11648/j.ajp.20170305.13

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    ACS Style

    Eduardo Alfredo Duro; Maria Eva Pereyra. A Rare Sporadic Polymalformative Syndrome with Congenital Abdominal Wall Defects. Caregivers and Parents Working Together Make Shared Ethical Decisions. Am. J. Pediatr. 2017, 3(5), 42-45. doi: 10.11648/j.ajp.20170305.13

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    AMA Style

    Eduardo Alfredo Duro, Maria Eva Pereyra. A Rare Sporadic Polymalformative Syndrome with Congenital Abdominal Wall Defects. Caregivers and Parents Working Together Make Shared Ethical Decisions. Am J Pediatr. 2017;3(5):42-45. doi: 10.11648/j.ajp.20170305.13

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  • @article{10.11648/j.ajp.20170305.13,
      author = {Eduardo Alfredo Duro and Maria Eva Pereyra},
      title = {A Rare Sporadic Polymalformative Syndrome with Congenital Abdominal Wall Defects. Caregivers and Parents Working Together Make Shared Ethical Decisions},
      journal = {American Journal of Pediatrics},
      volume = {3},
      number = {5},
      pages = {42-45},
      doi = {10.11648/j.ajp.20170305.13},
      url = {https://doi.org/10.11648/j.ajp.20170305.13},
      eprint = {https://article.sciencepublishinggroup.com/pdf/10.11648.j.ajp.20170305.13},
      abstract = {Improvements in ultrasound technology and the appropriate timing of antenatal ultrasound has led to refined prenatal diagnosis and enhanced accuracy of diagnosis of fetal anomalies and makes it possible to treat or not at birth, because they have diverse etiology and prognosis. They has severe congenital common finding as thoracoabdominal defects, spinal cord abnormalities, positional limb deformities, abnormalities of umbilical cord and ectopia cordis. The technological revolution and radical new treatment modalities in patient care cause ethical dilemmas when therapeutic possibilities are very varied. Healthcare workers at all levels of care, after detection of fetal defects need to get involved to provide better family management to reduce pain and suffering. Avoid a futile treatment is ethical obligation since the time of Hippocrates.},
     year = {2017}
    }
    

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Author Information
  • Faculty of Health Sciences, University of Moron, Buenos Aires, Argentina

  • Magdalena V de Martínez General Hospital, Buenos Aires, Argentina

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