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Meaningfulness and Meaninglessness in Neonatology

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Abstract

In the Lancet of October 1993, a case study was presented on the life of Baby K., a baby girl born with anencephaly.1 Before birth the baby was already diagnosed with this very serious congenital birth defect. In babies with anencephaly the vault of the skull is absent, and though the brainstem is present, the cerebral cortex is rudimentary or absent. In the case of Baby K. it meant that she had reflex actions like respiration and reflex actions to touch and sound, but she never would gain consciousness. There is no cure for this disorder. Without medical interventions these children die within days to weeks after birth, (though exceptions have been described). When Baby K. was born, she did not breathe. She was put on artificial ventilation, awaiting who knows? The mother insisted on continued intensive care and refused to give permission for a do-not-resuscitate order. The doctors wanted to limit their interventions to comfort care or to care-for-the-dying and viewed the intensive treatment as not appropriate. The case was dealt with in court and the judge decided that the intensive treatment had to be continued. The physicians were furious: “Next, we’ll have to give her [this child without cerebral cortex] an artificial kidney or perform a liver or heart transplant. ”

Keywords

Down Syndrome Bifid Spine Medical Circuit Artificial Ventilation Unborn Child 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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Notes

  1. 1.
    M. McCarthy, “Anencephalic baby’s right to life?”, The Lancet, vol. 342, October 9, (1993), p. 919.CrossRefGoogle Scholar
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    J.J. Rotteveel et al., “Actieve levensbeëindiging bij pasgeborenen met spina bifida?” (Life Termination of Newborns with Bifid Spine?), Nederlands Tijdschrift voor Geneeskunde, Vol. 140, no. 14 (1996), pp. 799–803.Google Scholar
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    J.J. Rotteveel reported that “in the dilemma of having respect for the human life and of the medical call to attempt to eradicate all factors leading to bio-medical accidents, there is, in our opinion, no place for active life termination. […]” This is an area of tension within which it certainly will be appropriate, in certain cases, to discuss where the priority should lie. It is our hope that discussions take place within the profession in which a code of conduct could be created. This is more valuable than these trial cases. Also see: A.L. Staal-Schreinemachers et al., “Toekornstperspectieven voor kinderen met spina bifida aperta” (Prospects for Children with Bifid Spine), Nederlands Tijdschrift voor Geneeskunde, Vol. 140, no. 24 (1996), pp. 1268–71.Google Scholar
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    Cited from reports in newspapers, in particular: Nederlands Dagblad, February 8, 1997.Google Scholar
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    “Mongoloid; this word was written on our hearts like a sentence; sometimes he seemed to me like a strange animal, having crawled out of a different nest.” From: G. Jansen-Smit, “Ons godsgeschenk” (God’s Gift to Us), in Een hand die in de mijne past (Poetry and Sayings about the World of People with Mental Retardation). Wezep: Bredewold Printers.Google Scholar
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    And, of course, other reactions of a psychosocial nature: the shock and shame felt by the parents when they find out their child is handicapped, the difficulty bonding with their child, and the reactions of their community (such as disappointed grandparents, or “how will I tell people at my work-place? ”).Google Scholar
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    “As the child gets older, the parents bond more with their child and find the thought of ending the life of their child more difficult” (p. 191). J. Stolk and A. van der Poel-van Vuuren, “Meningen van ouders over euthanasie bij hun ernstig gehandicapte kind” (Parents about Euthanasia of their Severely Handicapped Child), Nederlands Tijdschrift voor Zwakzinnigenzorg, no. 8 (1980), pp. 183–92.Google Scholar

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