There is no evidence that newborns with MMC and hydrocephalus do either ‘suffer’ unbearably or hopelessly and certainly not without the prospect to relieve this suffering by standard care. ‘Suffering’ itself is a nonconclusive,and in newborns, inapplicable denominator that should not be used anymore in this debate. Although they will in their future life be confronted with handicaps,sometimes very severe, their future prospects and their actual experienced quality of life cannot be predicted with such certainty at birth that their lives can be regarded as hopeless or meaningless (‘quality of life judgments’ as such being unacceptable in this decision making). Possible discomfort in these newborns can easily be treated in a straightforward way by active treatment (closure of the defect and shunting the hydrocephalus) and, when necessary,by the use of a professional pain/symptom protocol.
In the Netherlands, doctors sometimes euthanize babies born with spina bifida. There (and here), doctors sometimes refuse to treat them so that they will die. But now, a new journal article calls expose these lethal actions and non actions as the bigotry (my term) that they are. Writing in Childs Nervous System (2008; 24:13-28), T. H. Rob de Jong A Dutch pediatric neurosurgeon writes:
The decision not to treat such a newborn, when based on expected handicaps, possibly violates the ‘non-discrimination’ principle (Dorscheidt, 2006).When not being treated, they are not terminally ill because of the MMC and/or hydrocephalus per se; they are ‘terminally ill’ because of this nontreatment decision. Not being terminally ill, it is not ‘humane’ or ‘merciful’ to terminate their life, this also being not in accordance with international legislation and international medical
recommendations...
Such a child can and should be cared for in a respectful and dignified way, providing all its actual needs (which apparently is not death itself). This being the case, there is no indication whatsoever for the deliberate termination of the life of children born with MMC.
But at last: A learned and ethical answer to the benighted drive in the Netherlands to permit infanticide against babies with spina bifida. Hooray.
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