Early Management and Decision Making for the Treatment of Myelomeningocele

Abstract

A program for early selection and treatment of the infant with myelomeningocele was developed at the University of Oklahoma Health Sciences Center in 1977. Over a 5-year period, 69 babies were evaluated, 36 babies were recommended for early vigorous treatment. Of the 33 babies for whom only supportive care was recommended, five were initially treated at the parents' request, two underwent delayed vigorous treatment, one was subsequently treated by "crisis management," one moved and did not return for follow-up, and 24 received only supportive care. All 24 babies died between 1 to 189 days of age (mean 37 days). The involvement of several physicians and paramedical support personnel is considered essential for this approach of early selection and treatment. Continued support and regular follow-up is necessary for any baby who receives only supportive care. Parents retain legal custody. Although ethical concerns make any approach difficult, the method presented is considered to be the best alternative available at this time.

Health professionals, disability, and assisted suicide: An examination of relevant empirical evidence and reply to Batavia (2000).

“…The authors link such results to studies on treatment decisions, including a national survey in which two thirds of pediatric surgeons would not support life-sustaining surgery if their child had Down syndrome (Shaw, Randolph, & Manard, 1977). Perhaps the most often cited example by disability rights advocates of the link between physicians' quality of life prejudices and their subsequent treatment decisions is the report by Gross, Cox, Tatyrek, Pollay, and Barnes, (1983) describing in mathematical detail their quality-of-life formula for deciding which infants with spina bifida should receive lifesaving treatment and which should be allowed to die.…”