Blog Post

Doctors criticized for euthanizing babies born with spina bifida

by Susan Brinkmann, OCDS Staff Writer (Jan. 31, 2008) A Dutch pediatrician along with peers from several countries published an article in this months issue of the international medical journal, Childs Nervous System, criticizing the practice of euthanizing babies born with spina bifida (an incompletely formed spinal chord) in the Netherlands and around the world. In his article "Deliberate Termination of Life of Newborns with Spina Bifida, a Critical Reappraisal", Dutch pediatric neurosurgen T. H. Rob de Jong argues against the use of “quality of life judgements” in the case of infants born with the condition. There is no evidence that newborns with the condition are suffering either unbearably or in a way that cannot be relieved by standard care, he says. “‘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 . . .” Dr. de Jong bases his conclusions on medical evidence rather than the ethical arguments that are normally at the center of discussions about euthanasia. His article cites several cases where doctors made the wrong decision and euthanized babies whose prognoses could not be known with certainty. One such case occurred in the early 1980's in Stony Brook, New York and involved an infant known as “Baby Jane Doe” who was born with spina bifida which was complicated with hydrocephalus (excess fluid on the brain). Her parents were told that she would spent the rest of her life “lying in bed, bottle fed” and would experience “no joy, sadness or any such emotion except response to pain and would develop no cognitive skills,” Dr. de Jong recounts. As a result, the parents opted not to treat her. “However, the physicians turned out to be wrong,” Dr. de Jong wrote. “Although the child developed meningitis, sepsis, and hydrocephalus (which were only treated to some extent), she survived all these complications, was taken home, became ambulating and communicating on an acceptable level of intelligence, all this despite the partial treatment.” While 95 percent of babies diagnosed prenatally with spina bifida in the West are aborted, the Netherlands is the only country that legally permits babies born with the condition to be euthanized. The controversial policy, known as the Groningen Protocol, was established by the Dutch Pediatric Association to serve as a guideline for the termination of babies born with disabilities and children up to 12 years of age. These guidelines state that the diagnosis must be certain and that the diagnosis and prognosis of hopeless and unbearable suffering be confirmed by at least one independent doctor. Before being euthanized, the informed consent of both parents must be acquired and the procedure must be performed under acceptable medical standards. Besides the use of lethal injection, these acceptable medical standards include the decision not to treat the infant, which Dr. de Jong says may violate the “non-discrimination principle” because the infants are not terminally ill. “ . . . (T)hey are ‘terminally ill’ because of this non-treatment decision,” he argues. “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 (spina bifida).” But to do this will take true compassion, which means to suffer with, says Wesley J. Smith, antieuthanasia advocate, award winning author, lawyer and Senior Fellow at the Discovery Institute. On his popular blog, “Second Hand Smoke,” Smith applauded Dr. de Jong’s article for exposing the “bigotry” of these practices. “Too often, in our utilitarian times, it is deemed better to just do away with the problem by doing a way with the patient--a false compassion. . . . “But at last: A learned and ethical answer to the benighted drive in the Netherlands to permit infanticide against babies with spina bifida. Hooray!” © All Rights Reserved, Living His Life Abundantly/Women of Grace.