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Review
. 2008 Jan;24(1):13-28; discussion 29-56.
doi: 10.1007/s00381-007-0478-3. Epub 2007 Oct 10.

Deliberate termination of life of newborns with spina bifida, a critical reappraisal

T H Rob de Jong  1
Affiliations
Review

Deliberate termination of life of newborns with spina bifida, a critical reappraisal

T H Rob de Jong. Childs Nerv Syst. 2008 Jan.

Abstract

Objects: Deliberate termination of life of newborns (involuntary euthanasia) with meningomyelocele (MMC) is practiced openly only in The Netherlands. 'Unbearable and hopeless suffering' is the single most cited criterion for this termination, together with the notion that 'there are no other proper medical means to alleviate this suffering'. In this paper, both (and other) statements are questioned, also by putting them in a broader perspective.

Methods: First, a historical overview of the treatment of newborns with MMC is presented, concentrating on the question of selection for treatment. Second, a thorough analysis is made of the criteria used for life termination. Third, a case of a newborn with a very severe MMC is presented as a 'reference case'.

Conclusion: 'Unbearable and hopeless suffering' cannot be applied to newborns with MMC. They are not 'terminally ill' and do have 'prospects of a future'. In these end-of-life decisions, 'quality of life judgments' should not be applied. When such a newborn is not treated, modern palliative care always will suffice in eliminating possible discomfort. There is no reason whatsoever for active life-termination of these newborns.

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Figures

Fig. 1
Fig. 1
Photograph of the newborn, showing the extensive MMC, extending from +/− the 4th thoracic vertebra till the midlumbar region
Fig. 2
Fig. 2
Photograph at the end of the surgical procedure. The MMC was closed by making use of extensive rotational flaps together with free skin grafting
Fig. 3
Fig. 3
a Comfort scores during the first month of life (min = 5: no discomfort; max = 35: extreme discomfort). Green bars: only paracetamol (intermittently) being used. Green/black bars: low-dose morphine together with paracetamol being used. b The same as a, but now with the VAS (min = 0: no pain; max = 10: most severe pain) Note: The combination of a Comfort score of at least 17 and a VAS of at least 4 indicates that the well-being of the newborn is in jeopardy. In such a situation, the attending nurse is expected to determine the cause of the discomfort and to take adequate measures (changing a full nappy, feeding a hungry child, emptying a full bladder, giving adequate painkillers if appropriate, etc.) to secure the child’s well-being
Fig. 4
Fig. 4
The same child at 7 months old; fixating and following with the eyes, vocalizing, normal movements of the arms, moving both legs vigorously (perhaps nonvoluntary), still being partially fed by a nasogastric tube
Fig. 5
Fig. 5
a and b Preliminary results of the Rotterdam Prospective Study on Discomfort in Newborns with MMC (n = 13)
See this image and copyright information in PMC

References

    1. {'text': '', 'ref_index': 1, 'ids': [{'type': 'PubMed', 'value': '6744985', 'is_inner': True, 'url': 'https://pubmed.ncbi.nlm.nih.gov/6744985/'}]}
    2. Amacher AL, Wellington J (1984) Infantile hydrocephalus: long-term results of surgical therapy. Child Brain 11:217–229 - PubMed
    1. Anonymous (1979) Non-treatment of defective newborn babies. Lancet 1123–1124 - PubMed
    1. {'text': '', 'ref_index': 1, 'ids': [{'type': 'DOI', 'value': '10.1017/S0012162203001518', 'is_inner': False, 'url': 'https://doi.org/10.1017/s0012162203001518'}, {'type': 'PubMed', 'value': '14667073', 'is_inner': True, 'url': 'https://pubmed.ncbi.nlm.nih.gov/14667073/'}]}
    2. Barf HA (2003) Cognitive status of young adults with spina bifida. Dev Med Child Neurol 45:813–820 - PubMed
    1. {'text': '', 'ref_index': 1, 'ids': [{'type': 'DOI', 'value': '10.1097/00004356-200403000-00006', 'is_inner': False, 'url': 'https://doi.org/10.1097/00004356-200403000-00006'}, {'type': 'PubMed', 'value': '15097169', 'is_inner': True, 'url': 'https://pubmed.ncbi.nlm.nih.gov/15097169/'}]}
    2. Barf HA, Verhoef M, Post MWM, Jennekens-Schinkel A, Gooskens RHJM, Mullaart RA, Prevo AJH (2004) Educational career and predictors of type of education in young adults with spina bifida. Int J Rehabil Res 27:45–52 - PubMed
    1. {'text': '', 'ref_index': 1, 'ids': [{'type': 'DOI', 'value': '10.1007/s00381-004-1128-7', 'is_inner': False, 'url': 'https://doi.org/10.1007/s00381-004-1128-7'}, {'type': 'PubMed', 'value': '15952030', 'is_inner': True, 'url': 'https://pubmed.ncbi.nlm.nih.gov/15952030/'}]}
    2. Beeker TW, Scheers MM, Faber JAJ, Tulleken CAF (2006) Prediction of independence and intelligence at birth in meningomyelocele. Child’s Nerv Syst 22(1):33–37 - PubMed