Deliberate termination of life of newborns with spina bifida

Abstract

Rob de Jong, in his article, reviewed in a very reliable way all important aspects (medical, ethical, and legal) concerning the recently established problem of active termination of life in newborns with spina bifida. Unfortunately, at present, this extremely important issue has not only a theoretical importance but also practical. Recently, some Dutch physicians have performed several procedures of euthanasia in cases with myelomeningocele (MMC). All these procedures were done in the name of mercy and of the unbearable and hopeless suffering of the newborn. However, this clearly showed de Jong that there is no excuse for such proceedings. In my opinion, there are several reasons to find the termination of life impossible to accept, especially in newborns. First, all criteria included in the so-called ‘Groningen Protocol’ proved to be very subjective, vague, and because of that, completely unpractical. We also must be aware that we are trying to decide about the future of a newborn who is not able to decide for himself, and the estimation of his future life quality is nothing more than subjective prognosis, based on the impressions of “healthy” adults. What is more if we want to be consistent with our statements and terminate life on newborns with spina bifida, then we should...apply the same rules to other categories of handicap, and this is already...the slippery slope ending...nobody knows where. As I live and work in a Catholic country where the iatrogenic abortion is almost never performed, we usually treat about 20 newborns with spina bifida and MMC per year. According to my 10-year experience, I entirely agree with McLone, Charvenak, and Zachary that these children have not been suffering from unbearable pain, either acute or chronic. Although some of them are handicapped, sometimes quite seriously, many live relatively independently, work for a living, attend schools, and be neither less nor more happy than their physically healthy peers. Concerning a possibility of verbal abilities, I would like to stress that it is even characteristic that children with hydrocephalus and MMC develop impressively well in the sphere of verbal communication (so-called “cocktail-party personality”), so they usually have no problems with any kind of communication. In my professional career, I have seen newborns who have a severe hydrocephalus and appeared to have had no chance for a reasonable psychomotor development, and against any prognosis, they have developed surprisingly well. Thus, I think it is also absolutely unacceptable to decide about active life termination on the criteria of the prediction of future severely disturbed senso-motoric development and caused by that low quality of life. I strongly disagree with the cited statement of Prins that “there is no moral difference between killing and withholding useless medical treatment. There is an emotional difference.” My opinion is that actually the difference is very basic and very moral and that, as physicians, we have been trained to save the life not to kill. That is certainly neither obstetrician nor any other physician who is competent to make such kind of statements that touch the most fundamental elements of human existence. I am in total agreement with Saugast who stated that euthanasia of newborns has been “non-compatible with Western humanistic traditions” and should be rejected by medical societies. Childs Nerv Syst (2008) 24:47 DOI 10.1007/s00381-007-0487-2