Neonatal ICU Issues: Case 2
B.R. is a term female infant from an unexpected pregnancy. She has Down syndrome (Trisomy 21) and also has a complex cardiac lesion that will require at least two major surgical procedures during early infancy for her to have a chance to survive beyond childhood. B.R.'s parents, ages 44 and 45, have three other children, all in college. They have considerable ambivalence as to what to do: continue to pursue potentially beneficial though burdensome and costly treatments, or forego such treatments in favor of a more conservative approach.
What are the issues involved?
That the child has Down syndrome should not be a factor in the decision-making process. Moreover, it is also not appropriate to allow financial issues to play a major role. The parents, who are the decision-makers, should be apprised of the medical facts (types of surgical interventions required, chances for success). They should also be given a good understanding of the amount of suffering the child will experience during aggressive intervention efforts. They should then come to a decision based on the child's best interests.