Ethical Aspects of Care of the Newborn with Serious Neurological Disease

Handbook of Intellectual and Developmental Disabilities

“…Even if there are no questions about presenting the prenatal diagnosis, there are many questions surrounding how the diagnosis should be presented and, particularly, what kinds of discussions to hold with the expectant mother and, possibly, father regarding the seriousness of the diagnosis, prognosis, and, if any, available treatments. Most of the issues are covered in the literature in a general way (Hauerwas, 1975;Hemphill & Freeman, 1977;Reich, 1987). It is generally recognized that recent advances in neonatal care have greatly increased the likelihood of survival of infants with serious medical conditions (Hauerwas, 1975), but this increased probability of survival comes at a large increase in cost at the neonatal intensive care unit and possible later medical costs throughout childhood and, perhaps, the life of the individual (Reynolds, 1978).…”

Changing ethical issues in the treatment of spina bifida: A personal odyssey

“…Each decision has consequences for the child and for the family and, in the newborn, is of necessity a proxy decision, susceptible to all the potential biases and prejudices of the parent(s), physicians, and of society [Hemphill and Freeman, 1977].…”

“…Seeing many untreated children survive infections only to return weeks later with the back epithelized and the hydrocephalus progressive, this author advocated vigorous and early treatment to avoid the secondary complications of meningitis, infection, and the slow lingering death due to hydrocephalus [Freeman, 1974a[Freeman, ,b, 1978Hemphill and Freeman, 1977;Leonard and Freeman, 1981;Freeman and McDonnell, 1984]. Since most of these children survived, we adopted a policy of attempting to optimize their future [Freeman, 1974a;Leonard and Freeman, 1981] through the use of coordinated clinics staffed by orthopedists, urologists, brace-makers, and counselors.…”

Ethical issues in perinatology—the rights of the fetus and newborn

“…Indeed, who decides that a Down's child or child with minor congenital abnormality means less or has less worth than another child (Jonsen, et al, 1978)? Can society set guidelines for the use of its medical and surgical techniques to care for the correction of genetic defects or deformities (Hemphill & Freeman, 1977;Lovber, 1974)? These are serious queries, far from hypothetical, and have great implications if we are to serve our moral commitment to the fetus and newborn.…”