Selected Reform Responsa
DANGERS OF SURGERY CORRECTING CONGENITAL CRANIOFACIAL MALFORMATIONS
QUESTION: A twenty-six year old man was born with Apert’s syndrome, a disorder which is known as craniofacial dysostosis. This illness is found in a severe form in my patient, Albert. His strange appearance frightens children. He cannot chew food properly. His nasal airway is small, so he cannot breathe through his nose. He is disturbed and he suffers from many colds, etc. due to poor breathing. Surgery would correct some of these problems and improve his appearance. A social service agency favors surgery and would pay for it.
It is not entirely clear whether this individual wishes to have the surgery. His intelligence is limited as he is educably retarded. His mother is very much dependent on him for companionship and transportation, and has cared for him all his life. The risks of the operation are formidable and might lead to blindness, meningitis, seizure disorder and coma, or even death. The issues in this situation are the following: Albert, due to his limited intellect and his long standing physical deformity, may experience little impact from this extensive surgery and its attendant risks. In addition, the potential sacrifice and suffering the mother will experience are also disquieting. Finally, the expenses to achieve this result will be tens of thousands of dollars, and perhaps more if there are complications. Is it appropriate to proceed?(Dr. L. Hurwitz, Pittsburgh , Pa .)
ANSWER: A number of different questions have been raised by this case. The first is the extent to which one should risk someone’s life for an operation whose results, because they are principally psychological, will not be known in advance. The social agency, which will pay for the extensive surgical procedure, feels that it will be beneficial. However, the patient and his mother have their doubts, each for different reasons.