Deliberate termination of life of newborns with spina bifida

Abstract

De Jong is to be complimented on his scholarly and lucid discussion of the many ethical dilemmas accompanying the management of children with spina bifida. He focuses particularly on evolving issues pertaining to the ethical and legal standards of practice in the Netherlands, but many aspects are relevant in all cultures and countries. The complex treatment decisions faced by all health professions dealing with parents and relatives of children with myelodysplasia are acute. However, they are never as acute as for paediatric neurosurgeons who usually, together with the obstetrician and delivering paediatrician, are the first to make these life-affecting decisions. De Jong argues compellingly that the correct ethical choice is to operate on all children whatever the level of the myelomeningocoele, degree of hydrocephalus and neurological dysfunction. He rightfully refutes the ability of any medical professional to judge the present and to prognosticate on the future quality of life. He convincingly rejects the concept of active euthanasia on the basis of the unreliability of estimating pain and suffering in neonates. In a first-world setting, where medical and surgical resources are available to all, I think to deny patients the right to life clearly violates their human rights . Especially since, as de Jong points out, virtually all our clinical methods of predicting outcome are unreliable. Emotional issues of religion and culture, both of professionals and parents, make objective decision-making impossible. Therefore, in countries where resources and access are available, the ethically defendable approach is to close the myelomeningocoele at birth and treat these patients actively in all regards. As has been argued elsewhere, it would be inconceivable not to treat a young teenager who sustained an acute spinal cord injury. Traumatic paraplegics have the same concomitant urological and neurological dysfunction asmyelomeningocoele children, but the same ethical debate surrounding the management of these patients does not arise. De Jong also points out that the medical professional’s attitude toward the quality of life of patients with myelomeningocele may have an undue influence on parents’ decision regarding the termination of pregnancy. Since prenatal imaging and ultrasound have improved, such decisions have become more frequent. The effect of overly pessimistic perceptions by obstetricians, paediatricians and paediatric neurosurgeons on such decisions should therefore be kept in mind. It clearly behoves all who deal with these children to be sufficiently informed about all aspects of myelodysplasia as the literature on the subject is huge. Parents whose child has been prenatally diagnosed with a myelomeningocoele should be objectively, not subjectively, informed. Where appropriate, they should be placed in contact with the many resource centres and support groups available. Only then can consent for termination of pregnancy be considered to be truly “informed”. Differing ethical dilemmas arise in countries where not enough resources are available to patients both in hospital and at home; where it is not possible to have urological follow-up or shunt assessments; where there is no access to wheelchairs or intermittent catheterisation ,which is often the case in rural settings. Children born into poor socioeconomic environments are commonly one of many siblings. Myelomeningocoele children often then ”usurp” all the meagre resources of the household so that the care of Childs Nerv Syst (2008) 24:55–56 DOI 10.1007/s00381-007-0489-0