A newborn child with birth defects can now be operated on to correct the defects and prolong the child’s life. Also, many infants who would have died a generation ago now survive. This ability to correct defects and prolong life expectancy has increased the responsibilities involved in human decision making. Deciding who should legally make these decisions has presented a problem, though. The rights of all American citizens (including infants) are protected by the United States Constitution, but they may conflict with the rights of a family to decide what is best for its own child. An excellent example is the case of “Baby Jane Doe”, whose rights were argued through court after court. “Baby Jane Doe” was born on 11 October 1983 in Port Jefferson, New York with several life-threatening birth defects. They included: spina bifida (an open spinal column), hydrocephalus (excessive fluid on the brain), micorcephaly (unusually small head), and malformation of the brain stem. The same day she was transferred to State University Hospital in Stony Brook, New York, where doctors told the parents the option of surgery to drain the skull and join the spine. With surgery, she could live for perhaps two decades, but she would probably remain bedridden, severely retarded, partially paralyzed, and would require constant medical care (possibly even more operations). Without the surgery and instead facilitate the use of other, more conservative medical care, she could live for two years. After considering what was best for the child, the parents decided against the operation. Their decision was supported by Catholic clergymen, social workers, and all of the physicians involved with treating the infant. Lawrence Washburn, an Albany, New York attorney from Dorset, Vermont, was informed of Baby Jane Doe through a 24-hour telephone hotline operated by right-to-life advocates. He was outraged when he learned that Baby Jane Doe’s parents decided against corrective surgery. He bypassed the local child protection agency and went straight to the judicial courts, where he sued to force surgery. The Supreme Court of New York State, presided over by Judge Melvyn Tanenbaum, who was elected by mostly right-to-life supporters, approved and ordered the surgery. He also appointed a guardian for Baby Jane Doe, attorney William Webber. However, the ordered surgery decision was overturned by a New York State appellate court. Webber, the court-appointed guardian, then took the case to the New York Court of Appeals. On 28 October, they unanimously upheld the Appellate Court’s decision not to order surgery. The American Life Lobby complained to the federal government, who decided to become involved. President Reagan’s chief counselor Edwin Meese and Surgeon General C. Everett Koop took action, and on 2 November Koop announced that the Justice Department would intercede in the case. The federal government sued State University Hospital to surrender all medical records of the infant. The government used Section 504 of the Rehabilitation Act of 1973 as its justification. The law prohibits hospitals and other recipients of federal funds from discriminating against the handicapped. The institutions can lose all of their federal funding if they do not comply. Since the university was a federal grantee, the government said it had a right to check the records for any discrimination. The university argued its privacy laws and that child welfare issues were covered by state law, making Section 504 not applicable. The government has its duty to protect the lives of its citizens, and no one seems to argue with that. But handling the rights of handicapped infants is not as straightforward. The government may reason that its involvement would ensure equality, as the rights of the disabled have too often been ignored. Since a person who is disabled can be labeled “not normal”, decisions regarding that persons welfare may be wrongly influenced. There are also cases where the parents are not motivated by the best interests of their child, and then government must intervene to assure that the rights of the infant are maintained. An example is the case of a baby born in 1982 with down’s syndrome died in an Indiana hospital after his parents refused corrective surgery. Those who claim that governmental involvement would themselves be discriminatory argue that governmental procedures would not be attuned to the individual case since treatments would be based on a general rule. Also, governmental procedures would be likely disruptive and slow. Finally, the long-term care for the child would be a burden to the parents and not the government, and the current Reagan administration has not been forthcoming with support. An argument against this last statement is that given the wealth and resources of American society and even of the average American family, everyone should be in favor of even very costly lifesaving treatments for a disabled infant, since there is such care for the average adult. Also, there are many who will argue that the cost of raising any child is high, but at the same time no one would want a third, fourth, or fifth child of a family denied lifesaving treatment because of the burden it would cause on a family’s finances. Along with the government, there are laws which distinguish various levels of medical treatments: performing extraordinary acts to prolong a lifespan, such as through surgery; performing more ordinary acts, such as artificial feeding; performing common acts, such as normal feeding; and committing acts to shorten or stop a lifespan. For consideration of the last, “pulling the plug” of a patient in a comatose condition is judged as homicidal by some, but what about not taking action on someone who could be more health with treatment. No one is required to prolong his or her life by all means available, especially if it would aggravate pain and illness. Every patient (or patient’s guardian) is allowed to a certain degree to refuse a given medical treatment when its risks outweigh probable benefits, when instead of improving the patient’s condition it causes more debilitation treatments, or when it poses some threat to the patient’s life. Baby Jane Doe’s parents argued that the choice of conservative medical care was the best choice for the infant. They refused the surgery because it had serious risks and offered few benefits to the infant’s health and life. The parents insisted that this choice met acceptable medical standards and there was no need for intervention. One must remember to consider how Baby Jane Dow herself would react. What are the rights of the handicapped and infant? If Baby Jane Doe could understand and rationally consider the options, would she choose a misery of twenty years or two? A competent adult looking at similar prospects would probably ask his doctors not to operate and prolong his misery. So where does the interest of the infant differ? The “right” of the handicapped infant to make life decisions rests on the right, essentially the duty, of the competent and responsible. In this case, Baby Jane Doe’s rights were decided by her parents, doctors, and the federal government. There is still the question of who actually has the greater right to make ethical decisions. One can conclude that if there is neglect of proper medical care for a child, the government has a duty to intervene on the child’s behalf, even against the parents wishes. And if the child is discriminated against on the basis of handicap, the government has a clear reason to correct the matter. But when there is no negligence or discrimination, it is the role of parents with their doctors to decide what medical treatment is appropriate.
[The final part of your analysis veers into opinion. However, you do consider a good range of issues involved in the case.]