Chapter 9 : Severely Impaired Newborns, Futility and Infanticide
|Section 2. Social Context|
Summary by James Rowe, QCC, 2005
287,000 babies are born annually at least six weeks premature, approximately 45,000 of weigh in at less than 1,600 grams, although owing to medical and technological breakthroughs in recent years, 85 percent are able to live long enough to leave the hospital (but many must make a return trip), with twenty percent even going on to have no lasting major mental or physical disability. Others, however, fair far worse, with half of infants weighing 500-750 grams soon dying, and 25-44 percent of babies under 750 grams being irreversibly neurologically damaged, with this figure rising to 40 and 50 percent in the range of 500-600 grams. Approximately 5-10 percent of these premature children with exceedingly low-birth weigh will have cerebral palsy, with a roughly equal amount having IQs below 70. Children born before the 21st weeks have a near 0 survival rate, although considerations of sex and racial group do come into play, with females being one week more developed than males, and blacks one week more developed than whites at the same time in the pregnancy on average, and therefore giving a survival advantage to the premature female black child. The cause of this low survival rate and high rate of physical and mental disabilities is simple: These children have not spent the proper time in the womb and thus are, for all intents and purposes, “fetal infants”. They are liable to suffer from disorders of eating, digesting food, and absorbing nutrients, with lungs generally small and brittle and which fill with bodily secretions, robbing them of the ability to properly breathe. Most are placed in mechanical ventilators for such an activity. Cerebral hemorrhages (brain bleeds) are another serious concern, causing the child to come down with seizure disorders, blindness, low vision, deafness, mental retardation, and many more subtle disabilities that may develop later.
New technology has been a Godsend for helping these children live longer lives, with the survival rates having risen dramatically in the last twenty some years, with hope for children born under 700 grams where prior to the invention of the neonatal intensive care units (NICUs) the survival rate was essentially 0. Being able to perform dozens of tests from only a few drops, instead of a whole vial, of blood has also facilitated quicker and effective care, with recently developed pulmonary surfactants allowing the children to be taken off respirators sooner. Another promising development is the usage of corticosteroids to treat pregnant women who are likely to give birth prematurely (within the twenty-four to thirty-four weeks of pregnancy) can stimulate fetal development and, specifically, hasten the development of the lungs, thereby allowing a one third quicker departure from the NICU. However, due to “crack babies” and children born to women who have received no prenatal care, NICUs are heavily taxed.
Socially, it has been found that premature children do suffer, with a 2000 study showing that though 57.5 percent of normal-bright-weight siblings graduated from high school, only 15.2 of low-birth-weight siblings did the same, a statistic that speaks of a major problem for such twins to ascend the social ladder and assure themselves a place in society that allows them to enjoy material success in life. Another study in 2000 revealed that 1500 babies followed throughout their lives and born two to three months prematurely from 1977-1982 and weighing one pound two ounces to two pounds four ounces at birth, at age 8 half were receiving special education, a figure which is only 10 percent of the population otherwise. 25 percent to 6 percent had repeated a grade in school, and with only half of the lowest birth-weight children scored in the normal range on intelligence and achievement tests, and 42 of the 150 were found to have neurological or sensory disorders, including cerebral palsy, blindness, and deafness, and those who lacked such still scored significantly lower on tests. It is almost one hundred percent evident that when born premature, one is essentially disabled, to one extent or another, throughout life. At the very least, however, another study conducted in 1996 of 150 adolescents found that, though 27 percent of the group had disabilities, they themselves affirmed their quality of life on a level equal to that of the general population, with only one viewing death as superior to his current state.
Financial issues are also major concerns. A premature baby can run a bill of 3,000 dollars a day, with very-low-birth-weight children having to remain in the NICU for weeks or months, the most extreme cases costing 500,000 dollars to care for, which, although exceedingly expensive, does not guarantee, nor even gives them a good chance, of getting any real benefit out of the care. Considering many of these children are born to mothers who are uninsured and/or unemployed , Medicaid, and thus the taxpayer, pays the lion share of the treatment costs, a situation confounded by many being drug abusers. Michael Rie, a neonatologist at the University of Kentucky, argues that the spending of such money is fruitless, “The hundred highest users of Medicaid dollars in each state are preemies who end up for months on ventilators and end up with cerebral bleeds and extremely lousy outcomes.” To put the costs into perspective, it costs 20 percent more to care for an infant less than 750 grams than a heart transplant surgery and three times more than a serious burn victim. The exceedingly young, in fact, eclipse the seriously old in medical costs, even though the elderly tend to be singled out for disproportionate level of care they need. In light of the pressing financial concern, Oregon has reformed it state Medicaid spending to place treatment for very-low-birth weight infants at the lowest spectrum of priority, or 708th on a list of 709 items. Needless to say, a great deal of controversy has erupted over Oregon’s decisions, with many neonatologists considering it a moral duty to treat all infants no matter how disabled, no matter how little chance of survival they might have. Others hold in opposition to this view a notion that some cases are fruitless, with one NICU physician proclaiming his hospital’s policy as being, “We generally keep them warm and let them expire by themselves. These are not viable babies, and it’s crazy to do anything more.” Due to this divergence of medical opinion, what holds true in one hospital may not hold true in another, and thus one could say the roll of the dice determines the fate of the premature.
Parental rights are also a serious issue of debate as regards this. Due to the aforementioned hospital decisions, many parents are completely left out of the issue, whether they are for or against the baby’s continued survival. The fundamental notion of parental rights, rooted in their responsibilities to their children and the nature of the family, has lead to the courts ruling in favour of parental hegemony in the manner, allowing the parents to make the decision as to which course to take, and thereby eliminating blanket decisions of infant worth. These decisions essentially overturned the so called “Baby Doe Laws” passed in 1985, that instituted federal regulations that were interpreted to mean that all newborns, regardless of any considerations, were mandated to receive lifesaving treatment and support. Some parents, however, do not want to be involved in the decision making process of such a weighty decision, allowing the doctors to take over for them in this regards, although they themselves are fallible just like all human beings, and not being able to presciently determine the future, are often incapable of accurately predicting when aggressive treatment is appropriate. One thing, however, which is often omitted from these discussions, is that some NICU doctors do exploit the opportunity of premature births to attempt to test the limits of known technology, which could lead to innovation that may one day eliminate the present grim realities of prenatal care. To avoid any of these controversies, many have tried to institute non-vested interest hospital ethics committees, who may well be in a position to make more objective decisions in such a critical situation.
As nearly always, the ethical and other considerations of this issue have not since, nor may well ever be, settled.
Anencephaly and a Mother’s Request: Baby K.
In 1993, in Fairfax Hospital in Falls Church, Virginia, a female baby by the name of Baby K was born with the catastrophic brain impairment known as anencephaly. Both of her cerebral hemispheres were utterly lacking, dooming her to a life without even the lowest level of thought, and only with the brain stem remaining intact to regulate such functions as breathing, and even then, only for a while. Standard treatment, due to the sheer magnitude of the disability, is essentially to let the child die, providing them with no treatment aside from making them comfortable and nourishing them, knowing that the organ systems usually fail and death, usually by respiratory failure, generally comes anywhere from a few hours to a few weeks. In the case of Baby K, however, the child survived far, far longer than normal, owing, evidently, to the mother’s Christian faith, which shaped her life to the extent that a court document stated that she was, “acting out of a firm Christian faith that all life should be protected.” Due to the hopelessness of the situation, however, the hospital went to the federal district court after the sixteen month child was brought in twice for respiratory treatment (her days were usually spent in an extended care-facility) and sought a ruling as to whether it would not violate federal or state law if the hospital refused to provide Baby K with additional treatment, with physicians from said hospital affirming the futility treating Baby K further. A hospital ethics committee agreed with the doctors, but the court ruled that the hospital had to preserve the child’s life.
The case would be appealed by the hospital and supported by Baby K’s father (who was not married to the mother), with the court ruling in a 2-1 decision that the 1986 Federal Emergency Medical Treatment and Active Labor Act required the hospital to provide treatment for Baby K. Although the court recognized that providing respirator treatment to a child with this ailment was fruitless, the law as passed by the US Congress did not make provisions for situations in which the “required treatment would exceed the prevailing standard of medical care.” This decision surprised most observers, due to the law being passed to keep private hospitals from “dumping” patients to public facilities when they had emergency problems but no money and health insurance to pay for the cost of their hospitalization. There was no problem with payment in Baby K’s care, however, the mother being a fully insured member of the Kaiser Permanent health maintenance organization. The attorney of the mother, Ellen Flannery, commented that she thought the court simply applied properly and in a direct manner, “There’s no dispute that the appropriate treatment for acute respiratory distress is ventilation. The care is not physiologically futile. It will achieve the result required by the mother, and that is to stabilize the baby.” An oppositional view rooted in concerns over the limitation of ethics committees, doctors, and hospitals being able to have a say in decisions regarding infants, was offered by Arthur Kohrman, head of the American Academy of Pediatrics ethics committee, “this is a profoundly important case, because it strips away the ability of physicians to act as moral agents and turns them into instruments of technology. [Anencephalic] babies are born dying, and the issue is not prolonging their death but supporting it in a humane and dignified way.” Robert Veatch, head of the Kennedy Institute for Bioethics, testified on behalf of the mother the view that, “These are religious and philosophical judgements on which physicians have no more expertise than parents.
The full extent of the ramification of this case is not yet known, but certainly decisions regarding not providing more than base care for children unexpected to survive may be overturned for whatever reason the parent may have for such a thing. Until congress changes the law, this is likely to remain the case, although whether congress shall ever do so – or whether it is proper – is debatable.
Baby Doe was born with Down syndrome and esophageal atresia in Bloomington Indiana, in 1982. Both parents and physicians chose to not perform the surgery which would have opened the esophagus and let the baby be fed, a decision which would lead to the child’s death by starvation and dehydration six days after his birth, and which was upheld by the courts. IN may of 1982, a month afterwards, the secretary of Health and Human Services notified hospitals that any who desired to receive federal funding could not lawfully “withhold from a handicapped infant nutritional sustenance or medical or surgical treatment required to correct a life threatening condition if (1) the withholding is based on the fact that the infant is handicapped and (2) the handicap does not render the treatment or nutritional sustenance contraindicated.” Ten months after this, then President Ronald Regan instructed that a more detailed regulation was to be issued, which included that hospitals were now required to display a poster in pediatric wards and NICUs that discrimination against disabled babies violated federal law and which would list a toll-free, twenty-four hour, “hotline” number for any suspected violations to be reported. “Immediate remedial action” was authorized to be taken by HHS to protect the children and hospitals were mandated to permit HHS investigators access to the relevant records of the patients and access into the hospital. Needless to say, such a thing stirred controversy.
The American Academy of Pediatrics, acting alongside other associations, brought the HHS to court to stop the these new protocols, with Judge Gerhard Gessel of the US District Court, ruling in April of 1983, that the HSS had failed to properly follow procedure by not taking into account the effects of a hotline number and that the regulations were issued without providing consultation and notification of those affected by them, and thus they were invalid. The latter of these problems revolving around a law made to prevent arbitrary bureaucratic decisions, with the former due to the disruptiveness of an anonymous tipster calling in a “baby Doe squad” which would subsequently horde physician and nurse time, make the charts and records unavailable, and in essence, impact the quality of health care for the infant. Judge Gessel also held that the regulations were apparently made to “require physicians treating newborns to take into account wholly medical risk-benefit considerations and to prevent parents from having any influence upon decisions as to whether further medical treatment is desirable.” He would also note that he felt that federal regulations regarding such issues ought to “reflect caution and sensitivity” and that “wide public comment prior to rule-making is essential.” HHS would respond to this by drafting a regulation on July 5th, 1983 that attempted to resolve the objection that invalidated its first, but due to the fact that they were essentially the same, the proposal was widely contested and thus on the 12th of January, 1984, yet another set of regulations were published. The debate didn’t end there in the least.
Another baby Doe case began on the 11th of October, 1983, when baby Jane Doe was born in Port Jefferson, New York, suffering from meningomyelocele, anencephaly, and hydrocephaly. The parents were informed that her life expectancy was 2 weeks to 2 years without surgery, but with it she may reach her 20th birthday, although doomed to a life of retardation, epilepsy, paralysis, and a high likelihood of urinary and bladder infections. After consulting with a Catholic priest, neurologists, nurses, and social workers, they decided that surgery would not benefit the child and chose to treat her with antibiotics to avoid infection of the spinal nerves that were exposed. They were quoted as saying, “We love her very much, and that’s why we made the decision we did.” Lawrence Washburn Jr, a lawyer who routinely made a habit out of initiating lawsuits on behalf of the unborn and impaired, learned of this case and petitioned the Supreme Court of New York (which is oddly equivalent to the Court of Appeals in other states) which ruled that that the child was in need of surgery, although Washburn, being not related to the infant, was not chosen as the lawyer to defend baby Jane Doe, but was instead replaced by one William Weber. This decision was appealed and reversed, with the court deciding that the parents ought to decide what is best for the infant, a decision the New York Court of Appeals (the equivalent of the Supreme Court in other states) would go onto uphold. Although grounds of parental privacy and responsibility were raised by the court, the main grounds were rooted in the procedural technicality that, under New York Law, the state only interfered when cases were presented in family court.
On the 15th of May, 1985, HHS’ final “Baby Doe regulations” were made effectual and implemented as part of an amendment to the Child Abuse Prevention and Treatment act that would be made law October 1985. Nineteen groups were involved in the creation of this regulation which expanded “medical neglect” to cover cases of “withholding of medically indicated treatment from a disabled infant with a life-threatening conditioning.” In three cases, regarding treatment – but not food and water – was not “medical neglect, namely:
The usage of the term “reasonable medical judgement” was defined as “a medical judgement that would be made by a reasonably prudent physician knowledgeable about the case and the treatment possibilities with respect to the medical conditions involved.” Child-protection services of the states were designated as those empowered to determine “medical neglect” and federal funds would only be given to such agencies which conceded to developing a set of procedures to carry out this function.
Both baby Does would stir even further controversy when the federal government would go onto demand the medical records of both children, on the grounds that there was discrimination afoot. In June 1985, the Supreme Court of the United States agreed to decide whether federal anti-discrimination laws would be applicable to imperiled newborns in similar situations. In a decision reached on the 9th of June, 1986, the Supreme Court, in a 5-to-3 ruling with one abstention, struck down the Baby Doe regulations. Justice John Paul Stevens wrote in majority opinion, that no federal laws require hospitals to treat impaired infants without the consent of the parents, nor does the government hold the right “to give unsolicited advice either to parents, to hospitals, or to state officials who are faced with difficult treatment decisions concerning handicapped children.” Moreover, the state controlled child-protection agencies “may not be conscripted against their will as the food soldiers in a Federal crusade.” In essence, the government could not interfere, nor were babies being discriminated against who had disabilities of this sort. Many involved in neonatal care found relief in the Supreme Court decision, arguing before the Court during the argument that, “Baby Doe squads arriving within hours after birth” had, through second guessing the horrific decisions that had to be made by parents and doctors about the matter of refusing to treat a child, had inflicted “a devastating impact against the parents.”
Like in other cases before this, the Supreme Court court’s willingness to put the fate of the child in the hands of the parents and doctors was again affirmed. The process of determining whether one infant or another ought to be treated is sometimes handled by review committees, but the power of the committees is debated, and still is the issue unresolved. Surely this shall not be the last of any of these issues.
Case : “Baby Doe” by Kaitlyn Nowicki (SCCC 2012)
A baby born in Indiana in 1982 was born with Down syndrome as well as a defect in the esophagus. The defect prevented the child from eating. The parents refused treatment. The Court system allowed the parents to deny it due to the “parent’s right to make the decision. Baby Doe die of starvation six days later during court case to get child adopted
URL’s on Case:
What is Baby Doe Natural Destiny? http://www.raggededgemagazine.com/0700/0700ft1.htm
“A life not worth Living?” http://www.rtl.org/prolife_issues/BabyDoeCase.html
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© Copyright Philip A. Pecorino 2002. All Rights reserved.
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