Question:
Sarah and Mike's baby boy was born with a defect called spina bifida, which involves an opening in the spine. In his case, it is of the more severe kind in which the spinal cord also protrudes through the hole. The opening is moderately high in the spine, and thus they are told that his neurological control below that level will be affected. He will have no bowel and bladder control and will not be able to walk unassisted. The cerebral spinal fluid has already started to back up into the cavity surrounding his brain, and his head is swelling. Doctors advise that they could have a shunt put in place to drain this fluid and prevent pressure on the brain. They could also have the spinal opening repaired. If they do not do so, however, the baby will probably die from an infection. Sarah and Mike are afraid of raising such a child and worry that he would have an extremely difficult life. In a few cases, however, children with this anomaly who do not have the surgery do not die, and then they are worse off than if the operation were performed. What should Sarah and Mike do? Why?