How Small Is Too Small? – Issues Surrounding the Low-Birth-Weight Infant
Linda L. Bellig, RN, BSN
My first job as a new RN in 1969 was in the special care nursery at Babies Hospital in New York City. The environment was cutting-edge. We rigged adult ventilators for babies, grappled with the care of infants less than two kilograms and participated in the developing research for future technology.
In the 1970s the medical care of sick newborns showed significant development and use of technology and specialized services. The small special care nurseries, found primarily in teaching centers, initially adapted adult intensive care techniques and equipment to meet the needs of their small patients. Clinical research and technological development of neonatal equipment and treatment during the next decades led to a significant reduction in mortality for smaller and smaller newborns. However, some argue that the morbidity for the survivors offset those achievements.
Society has also shown concern about care of very-low-birth-weight infants because of their consumption of expensive and limited resources. Many infants in the neonatal intensive care unit (NICU) suffer prematurity, asphyxia and/or congenital anomalies related to unacceptable lifestyle choices of parents such as drug use, alcoholism and promiscuous sexual behavior. Do we as a society reward antisocial and sometimes illegal lifestyles by reimbursing the health care costs of such behavior? In the utilitarian environment of today’s society, health care rationing is seriously considered if not practiced. Can we afford to spend $150,000 for a low-birth-weight infant whose outcome may be exceptionally costly if that money could be used for prenatal care for the ten to fifteen women, thereby decreasing the incidence of premature delivery for that group? Also, in an era of health care rationing, who has the greater right to health care, a fetal neonate or an adult? These are questions which permeate the perinatal health care environment, influencing the decisions made regarding life and death for very-low-birth-weight infants.
Baby boy Hermes was born at 28-weeks gestation to a teenage single mother who had lived in a home for unwed mothers for the last two months of her pregnancy. The delivery was uncomplicated, though methods to stop labor failed. The baby had fused eyes and appeared very immature. However, he initiated respirations and needed only some extra oxygen blown on his face before he pinked up.
At this stage of fetal development, an infant has immature physiological systems. His lungs are unable to produce and secrete adequate surfactant to maintain respiration. The enzyme secretion and absorption of the gastrointestinal tract are inadequate to allow the nutrition needed for growth. His immature kidneys cannot deal with hyperosmolar solutions in the circulation. Though the heart is fully formed and functional, fetal shunts still operate, which affects oxygenation. Neurological control of physiological function is labile, and the infant cannot control circulatory surges or restriction to vital organs such as the kidney, the intestines or the brain. The infant has difficulty maintaining body temperature and can suffer metabolic and acid-base problems if not protected – from environmental temperature changes. The brain is structurally immature and vulnerable to hypoxic or hemorrhagic injury and requires significant nutrition to insure adequate growth and development.
The skin is delicate and thin and cannot tolerate trauma, providing an inadequate barrier against infection. The immature immunological system functions poorly. The infant may have some protection from antibodies transferred via placenta from the mother; however, since these are received during the last trimester, the patient is likely to have minimal antibody levels if any.
The first ethical question is whether delivery-room resuscitation should be considered for this infant. Resuscitation interventions can range from blowing oxygen at the face of a cyanotic infant to full code response, with tracheal intubation and administration of cardiotonic drugs. The degree of assistance required generally is based upon how well the infant is adapting to extrauterine life: initiating respiration, maintaining circulation and responding appropriately to neurological stimulation.
The initial decision to resuscitate is usually made quickly without a great deal of discussion. The teams of nurses and doctors who attend these deliveries are technically well trained but may not have spent significant time exploring the consequences of resuscitation of very-low-birth-weight infants. The decision to resuscitate is also made without all pertinent information that would assist in predicting likely outcomes for these infants.
For example, resuscitation may be initiated in an infant who will later be determined to have a lethal genetic and/or congenital defect not diagnosed prior to delivery. Birth weight and gestational age have been used as indicators for resuscitation. Infants weighing less than 500 grams or born at less than 24-weeks gestation are generally viewed as too small to be successfully resuscitated. Fusion of the eyes is also seen as an indicator of extreme immaturity and may influence a decision not to resuscitate.
When the discussion is taken out of the delivery room, views may differ on the rightness of resuscitation of this infant. The Oregon plan for determining state reimbursement for health care places low priority for resuscitation of infants less than 500 grams. This utilitarian view of resuscitation of very-low-birth-weight infants is based on the expectation that a different use of these financial resources will bring a greater good. These infants are likely to have expensive health problems that will drain medical resources and might require expensive developmental and educational services. They may experience more pain and suffering than good in life. Infant weight of less than 500 grams as a determinant for whether to resuscitate an infant fits within rule-utilitarianism in that experience has shown that greater utility is attained when the rule of weight is applied. Quality-of-life concerns apply to this dilemma because these infants may have severe handicaps.
Immanuel Kant, a philosopher and ethicist, says that duty is more important than the consequences or utility of our actions. One has a categorical imperative to do the right thing. If the right thing is that sick infants should be resuscitated in the delivery room, then the possible consequences are not considered. In this way you act on a maxim which can be viewed as a universal law, thereby avoiding inconsistency and conflict. According to the second aspect of Kant’s principle of categorical imperative, we should “act so as to treat humanity, either yourself or others, always as an end and never as only a means.”
By insuring that people are not to be treated as a means, the categorical imperative adheres to principles of justice that can be missed in utilitarianism. If, however, our duty to resuscitate is viewed as an imperfect duty, we can select those for whom we must perform this duty. The deontologist – one who does his duty – may choose not to resuscitate those infants who are below a certain weight or gestational age.
However, deontology does not tell us what God would have us do. From a Christian perspective, each infant is created in the image of God (Gen. 1:26, 5:1,9:6; 1 Cor 11:7: James 3:9).This image of God is revealed in the mental, moral and social aspects of human beings. Because of our mental likeness to God, we have the capacity for redemption; even the life of the unregenerate is valuable (Gen 9:6). The moral likeness is responsible for our drive to know God, even in the face of the opposite pull of the will. The social likeness is seen in our need for relationships, just as God wishes for a relationship with us.” We are constantly maturing and growing nearer to the image of God as seen in Christ. The fetus is at a much earlier stage of that development.
According to Thomas Aquinas, a 13th century theologian and philosopher, the soul and the body are united from the beginning of life. We are “psychophysical unities, embodied souls and ensouled bodies.” The author of the 139th psalm recognizes that he was under the searching eye of God even within his mother’s womb. The psalm points out that our souls know very well the marvelous works of how fearfully and wonderfully we are made. This would be impossible unless the soul is present at this early time.
The virginal conception of Jesus as well reveals the importance of the embryo, and therefore the fetus. God joined himself with Mary’s flesh at conception and became flesh at the most fundamental level, the genes. Jesus was recognized at an early embryonic level when Elizabeth called Mary “the mother of my Lord.”) Infants, even at an immature stage, are beings with bodies and souls, with lives that have value to God. Otherwise, his Son would not have experienced that part of being human.
However, the infant and/or fetus as a person with rights has been repudiated by some philosophers. According to them, an infant is less deserving of life than certain members of the animal kingdom that possess some properties not found in the human infant. Dianne N. Irving, however, argues that all that is needed for the development and function of the person is determined at fertilization, when the unique combination of maternal and paternal genes occurs. The genetic plan for production of proteins that influence development, activity and everything else is laid down.
Irving states that birth at forty weeks is not an event that heralds the milestone that you are now human, but that human growth and development, which began at fertilization, continue from intrauterine life through the first twenty to twenty-five years of life. If growth and development and therefore adult capacity must be perfected for one to be a person, then personhood would not occur until the skeleton finishes development and the epiphyseal plates seal in the bones. Irving’s scientific thesis supports the Christian’s respect and value for the life of the unborn.
Baby Hermes’s weight placed him marginally at a level of maturity where resuscitation is the general standard of care. Also, this infant initiated respirations, indicating some vigor – a good sign and a cue that he wanted to pursue life. He was provided with the minimal resuscitation warranted by his condition and placed on 40-percent oxygen for his trip to the nursery. He had blood drawn for a CBC, electrolytes and blood gases, and received a chest x_ray prior to being moved to the NICU.
How Long Are We Committed?
Baby Hermes was stable on admission to the nursery. However, his hematocrit was low at 32 percent, which could be an ominous indication of an intracranial hemorrhage, common to asphyxiated premature infants and possibly resulting in neurological sequelae.
It was also learned that Baby Hermes’s mother was a fifteen-year-old runaway, who was in jail before being transferred to the home for unwed mothers. The father of the infant was also in jail. The maternal grandmother, informed of the baby’s birth, reluctantly agreed to take the baby until her daughter was released. The mother would finish her nine months of incarceration after discharge from the hospital.
An infant who is this immature is likely to be kept in the hospital from two to four months, part of the time in an extremely expensive NICU. The expected course would include some respiratory assistance, possibly on a ventilator if the condition deteriorates. The infant will need IV nutrition for several weeks. Such infants generally suffer at least one infection, requiring blood tests and cultures, urine cultures, chest x-rays, lumbar punctures and at least ten days of antibiotics. Failure to identify infection quickly can result in significant mortality or morbidity. The patient will need an incubator and cardiopulmonary monitoring for months.
Setbacks can increase the length of the hospital stay. Chronic lung disease, developmental delays or gastrointestinal problems result from the diseases associated with prematurity and may require home care. However, follow-up statistics show that a number of these infants survive without major problems. Therefore, the future is not necessarily ominous. Nevertheless, H. Tristam Engelhardt proposes that there are cases in which nonexistence would be better than existence under such difficult circumstances. He calls this wrongful life and suggests that making choices as health care professionals or parents that result in a painful, difficult existence for a child could require the decision-maker to legally justify the decision. The question for some is the extent to which all the technological and social services should be offered to an infant who may experience disability that could make life extremely painful.
Deterioration in condition may mean that the patient will suffer painful treatments and procedures. Though provided with pain management while on the ventilator, infants may experience pain from intubation, needle sticks and lumbar punctures, which are common experiences for a premature infant in an NICU. Some infants will experience damage from treatment or procedures: lung injury from ventilation, tissue damage from intubation, retinal damage from oxygen administration and intestinal necrosis from feeding their immature guts – common chronic problems associated with prematurity and care in the NICU.
Who is responsible for these problems? They happen even with the most conservative treatment plans because these infants are so physiologically immature. How does the nursing and medical staff deal with the turmoil of knowing that one’s care brings damage and pain, when only good is planned? The principle of double effect is applicable here. Since saving the infant’s life is the goal of the treatment, and not damage and pain, the damage and pain can be accepted ethically.
Baby Hermes experienced a relatively benign course during his first weeks of life. He needed more respiratory assistance and was intubated, placed on the ventilator and given increased amounts of oxygen. The baby suffered a small tracheal tear with intubation and was monitored for further damage. He was on the ventilator four days and then was gradually weaned to a nasal cannula with 28-percent oxygen. He had a blood transfusion on his first day and had no further problems with anemia. Ultrasound studies at ten days indicated a small intracranial hemorrhage. He had been started on tube feedings, which were progressing without problem.
His mother visited periodically and seemed interested in caring for her baby after discharge from jail. Then at six weeks, the baby’s serum glucose and sodium suddenly became unstable. Within six hours, his condition deteriorated rapidly, demonstrating total systems failure. He died of pseudomonas sepsis. The case may leave one with the unsettling feeling that the infant should not have been resuscitated, thereby avoiding a painful death. Were health care resources wasted when the outcome was negative?
Jesus, however, instructed his disciples: “As you go, proclaim the good news, “The kingdom of heaven has come near.” Cure the sick, raise the dead, cleanse the lepers, cast out demons” (Matthew 10:7-8). Because we have been greatly blessed with salvation, we are to be generous in giving to those in need around us. If Jesus ministered only when success was guaranteed, he would not have included Judas in his group of disciples or have directed the young ruler to give away his riches and follow him (Lk 18:18-23).
Paul teaches Timothy that we should not waste the church’s resources; for example, the young widows should not be supported by the church. Paul felt they should marry again because idleness could lead them away from the faith (1 Timothy 5:11-14). But resources are not necessarily wasted when used in unsuccessful endeavors. Judas and the rich young ruler were given the option to exert their free will, though their choices were not holy ones. Most of the accounts of Jesus’ ministry to the poor, sick or disenfranchised (for example, the demon-possessed man in Mark 5; the leper in Mark 1:40-45; the Samaritan woman in John 4) resulted in fruit for the kingdom. God was glorified, and men and women were saved.
In using resources in the care of low-birth-weight infants, we are using them in a clinical situation where there is some possibility for a good outcome. The infant by virtue of being human deserves these attempts. However, in the case of Baby Hermes, when over-whelming infection struck, no further resources were used because they were not likely to be successful. Baby Hermes’s family is like many of the disenfranchised, poor, sinning people to whom Christ ministered. The teenage mother’s concern, shown by her participation in the prenatal care program at the home for unwed mothers and her interest in her baby in the unit, showed an openness for change in her life. There also was some hope for reconciliation with her mother through the care of the baby. However, their greatest hope would be through the regeneration found in Jesus Christ.
Christ showed special interest in children, stating that we should be above reproach in our care of them (Mt 19:13-15). He blessed the little children and said that it was “to such as these that the kingdom of heaven belongs” (Matthew 19:14). Jesus directed his disciples to be humble as children, that the child is most valued in the kingdom of heaven (Matthew 18:3,4). Christians should be advocates to protect the small and vulnerable in this world. We should use great care in interventions required for continuation of their lives. We need to speak out against rationing of care to low-birth-weight infants who have demonstrated the vigor to survive. However, when the end comes we must care for them tenderly, and offer our prayers and presence to the parents and child at the time of death.
Linda L. Bellig, RN, BSN, MA, an instructor, neonatal nurse practitioner and track coordinator in the neonatal nurse practitioner graduate program in the Medical University of South Carolina’s College of Nursing, has lectured widely and published numerous articles on neonatal topics. She is on the medical center ethics committee.
May 4, 2018
September 9, 2018