Life and Death Choices in the Neonatal Intensive Care: How the Hardest Decisions are Made
By Anna DuMoulin
“Labor and Delivery Department, can I help you?” The gentle drawling Southern accent belongs to a young nurse just coming on to her rotation. Her gentle tones clash with the frantic voice of the man who has been on hold for what seems to have been a small life-time.
“Oh, help please! It’s my wife! She is supposed to have a C-section next week but I think she’s in labor now, there is water everywhere and she needs to have a C-section because of the baby!” Though the words spill out in an incoherent rush, they nevertheless make sense to this nurse. She may be young, but she has been working in the L&D long enough to have heard many similar phrases uttered in the same panicked tones. She speaks slowly and gently until the man is able to give her the basic patient information, enough for her to pull up the woman’s chart. She tells the man on the phone to please bring his wife in, but to drive carefully and without any rush. She reassures him, to his repeated query that they are prepared for whatever needs to be done, and are appraised of the surrounding circumstance regarding this upcoming birth. As her voice reassures him, repeating phrases by rote memory, she is scrolling through the patient file, her heart sinking a little. After hanging up the phone, she once again double checks the flags that have been attached to the file. She sighs, and takes a moment to mentally prepare herself for the coming night and the challenges it may bring. She sighs once again, and reaches for the phone, still warm from her hand. There are many calls that need to be made, and as the lights on the phone board start igniting and flashing as the information is spread between departments (Neurology, Obstetrics, Pediatrics, Neurosurgery, the OR, the NICU), she can’t get rid of the image in her mind of a flurry of fragile messenger doves released into the sky as a last swiftly flying bit of hope before the storm of the approaching army. And so, another birth story begins.
Many birth stories begin like this, with a phone call, a reassuring nurse, and hopes sent out into the sky on fragile wings. Many begin like this, but not all of them end the same. In some stories, the brand new little hearts cannot survive the storm of life, the fragile wings can’t catch the air, and the tiny doves are stilled before they even get a chance to fly. Others cast up into the sky get tangled in strings and ribbons, choking and pinned to the ground. They live, but at the same time do not live at all. Fate seems to have no preference, and if they will be able to fly someday seems to have less to do with them personally, and more to do with some unidentified cosmic influences. To reasoning adults far removed from the innocence of such doves, we can recognize this mysterious force as modern neonatal medicine.
The field of neonatal medicine is unlike other medical fields because of its age. In many ways, just like its tiny patients, it too is in its infancy stages. Neonatology is directly characterized by the biotechnological explosion that took place in the late 1960s. Before 1965, preterm babies who were born in the hospital were gently held in their parent’s arms and then, sometimes very quickly after birth, and even more gently, were mourned into a peaceful passing. Now, because of the advent of medical technology such as neonatal mechanical ventilation and the incubator, preterm babes are greeted in very different way upon their hasty arrival into this world. Babies are whisked immediately away from the quiet and safety of their mothers into a world filled with strange sounds, flashing lights, coldness, and pain. In the United States on average, there are 250,000 preterm babies born each year (Lantos, The Lazarus Case, 2007) . Each of these babies needs medical intervention to survive. Because these medical interventions are invasive, they can cause almost as many problems as they solve. But even within these challenging parameters, the NICU is also a place of miracles. Countless tiny citizens are also saved, and many have little to no lasting side-effects of their tumultuous entry and prolonged stay in the NICU. These success stories have made neonatology “the largest subspecialty in pediatrics and NICUs the cornerstone of every tertiary-care children’s hospital in the United States.” (Lantos, Neonatal Bioethics, the Moral Challenges of Medical Innovation, 2006) . However, for every success story, there is another story that doesn’t get told, because in many ways, the means have outpaced the reason. Babies of all sorts, not just preemies, are sustained and kept alive at any cost and by any means without regard to immediate or future harm. Many survivors of the NICU suffer from debilitating handicaps and long-term health problems – side-effects from drastic life-saving and sustaining treatments. It is not uncommon for parents of such severely effected children, years later, to wish that those decisions had not been made, and to constantly re-question the moral rightness of putting their children through immense suffering and harm. It is here that the ultimate moral questions which plague all intensive care units come in: the questions of quality of life, medical futility, and patient autonomy. These questions, though constantly debated between doctors, ethicists, courtrooms and in writings such as the text by Vaughn Lewis, “Bioethics Principles, Issues, and Cases,” nevertheless, do little to prepare patients and their families for the tough decisions that may arise in settings such as the NICU.
There is an alarming phenomenon that takes place in the modern western medical model: biotech discoveries and inventions have been taking place at such great speeds that the understanding, the moral ethics, the very heart of reason and discernment which goes back to the Hippocratic Oath and is what creates the framework for the need of such technology, is left floundering in the wake. This disconnection introduces some fundamental problems into the foundation on which all NICUs are built. This situation is aptly described in the book: Neonatal Bioethics. “Scientific and technological innovation was so rapid that important questions about the safety and efficacy of interventions could not be conceptualized until the scientific and technological innovations stimulated our imaginations enough to ask questions. The process of answering questions created new technologies, new understandings, and new questions, which could be answered only by further technological innovation.” (Lantos, Neonatal Bioethics, the Moral Challenges of Medical Innovation, 2006) . Meanwhile, babies continued to be born, each with their own individual situations which demanded immediate attention from doctors and parents, and so that need became a fan to the flame.
Neonatologists are asked, sometimes daily, to predict the future. Unlike the seer with the crystal ball at the town fair who feels no qualm in prophesying incorrectly, doctors are troubled and plagued, sometimes with nightmares or sometimes with court cases, over the clarity of their predictions. Although some thinkers and bioethicists like John Paris think that “The risk of mortality and morbidity becomes so significant and the degree of burden and the prospects of benefit so suffused in ambiguity and uncertainty that a decision as to whether to institute or continue medical treatment properly belongs solely to the parents” (Lantos, Neonatal Bioethics, the Moral Challenges of Medical Innovation, 2006) . This is an idealistic notion based on the assumption of the NICU environment as one where parents are empowered and educated without any degree of persuasion or paternalism to all the possible outcomes of their baby’s situation. Parents who are in shock, who are scared and confused, often do not fully understand the situation and therefore, it cannot be assumed that they are fully informed in the matter to be able to make any kind of major decision. That many parents believe, is the job of the doctor. In a study published in the Journal of Pediatric Nursing, parents of NICU babies were asked to relate any decision process they were part of and to summarize how the decisions were made. Across the board parents deferred to the medical professionals in all decisions that have a high degree of urgency or needed medical expertise. However, the decisions in which parents exhibited a preference of control had to do more with their knowledge of the risk levels, personal experience, and perceived parental duty and less to do with the medical knowledge available to them (Currie, 2016) . The doctor, therefore, is the healer, the person who has the answers, the one stable point in their spinning and confusing reality. The doctor can tell them, must tell them, the whole truth.
“Your baby is incompatible with life.” The neonatologist’s long fingers gently turn the cap on his pen, left, right, left again. He glances at the resident standing slightly behind him, her gaze lowered to the tan linoleum floor of the exam room, trying half-heartedly to disappear into the background. Why, the doctor thought, can’t these bad news visits be in a nicer room? Maybe with a window? The parents, sitting in the upright plastic chairs look as if they are frozen. The pregnant woman, just a girl really, finally meets his gaze, confusion and frustration teeming in her face. The father, also young, looks down at his hands, tightly clenched together in his lap.
“I’m so sorry,” The neonatologist repeats again, “I’m so very sorry to have to tell you that the results from the sonography show that your baby is missing part or most of his brain. This is a condition known as hydranencephaly, where fluid replaces brain tissue.
“But I thought that there is a shunt procedure that can drain the fluid and save the brain?” The girl blurts out, suspicion ringing in her voice. The doctor sighs inwardly, why is it always harder with the ones who google? There should be a no googling policy in the hospital. “That is true in cases of hydrocephalus, where the brain tissue is still present. Unfortunately, in the case of your baby, there doesn’t seem to be any brain tissue visible on the scans. This is consistent with hydranencephaly, and shunting is not considered a cure, though it is sometimes used as a palliative treatment.” He continued gently, “babies with this diagnose do not usually survive birth, and if they do with the help of extreme medical intervention, they can sometimes survive up to six months.” The parents seem to wilt at these words, the mother curling protectively over her 38-week belly, as if sheltering her baby from his words, as if his words were like physical blows.
“I don’t understand,” she whispers, “He feels so strong and healthy to me…” She trails off, lost in a world far apart from this sterile and cramped room.
“What do we do next?” The father finally speaks into the silence. “Well, for the future there are supports here for you, genetic counseling, a chaplain, a social worker, palliative and hospice care. But before all that, there are some choices that you will need to make regarding the birth, I and my colleagues will help you, and make any information that you need accessible. Because this information about your baby is just coming to light now, as opposed to in the beginning of pregnancy, there are limitations as to what can be done at this point until the baby is born. The birth will have to be via cesarean section, as your baby’s head has grown abnormally large due to the fluid build-up and a vaginal birth would be impossible. I recommend we schedule the C-section for a week or so from now, and meanwhile any supports that you need will be available to you. It would be best if you could make your preferences known to the obstetrics and NICU teams before hand, and I am happy to explain the different needs, questions, and procedures that may arise once your baby is born.”
The neonatologist watches the couple walk out of the room, the father holding up the mother, her arms still wrapped tightly around her belly, her steps faltering as if she was holding the weight of the world in her arms, and not just a little dying baby. The resident behind him shifted on her feet and let out an explosive breath, “That was nicely done I think, no drama thank God, hopefully they will be reasonable in their demands for interventions. Although it seems like any intervention is futile after that diagnosis, right? I hope they have good insurance! Crazy that she never had the kid tested before it was too late to abort.” She looked at him questioningly. He started, surprised at the matter of fact tone in her voice, the business-like words.
When did the hospital start churning out dispassionate and un-invested doctors? He wondered sadly. With each slick new biotech, and with the easy glitz of computers and diagnostic discoveries, the medical students became more removed and distant from their patient’s reality every year. Instead of how to dispense test results, why aren’t we teaching them how to dispense compassion as well? He felt old and outdated suddenly, maybe it was one of those signs that the older docs talk about, the beginning glimmers of an inevitability; of a day when retirement is no longer a distant possibility, but a longed-for reality. One thing was for sure however, he wouldn’t go anywhere until this couple’s baby was born and taken care of, one way or another. He wouldn’t leave them to the tender care of the residents at the NICU without his guidance and intervention. He keyed up his laptop just to double check the work rotation at the NICU and was reassured that he was the doctor in charge for another two weeks.
Three days shy of a full week after this tough meeting and only four days before the scheduled C-section, the couple returned to the hospital via the Emergency Department, and were met at the door by a wheelchair steered there from the L&D by the young nurse from South Carolina, who just coming on to her shift, was the only one available to pick up the ringing phone.
For Neonatologists like the one in this case, the NICU (Neonatal Intensive Care Unit) is their home turf. In most cases, the doctor will not get a chance to meet his future charges before like in the visit described above. There are usually only three types of babies that make the cut to become a resident of the NICU; the preemies, usually taken into the NICU with very little warning, the full-term babies with acute illnesses contracted almost immediately after birth such as meningitis or sepsis, and the babies born with congenital anomalies. During the 1970s, these last babies, the ones with birth defects, were the primary focus of the emerging ethical rhetoric about neonatal treatment decisions. The controversy and legal debate dealt primarily with the issue of medical futility, on whether providing life sustaining care or corrective surgical treatment for babies in which the treatments do not cure the underlying disorder or syndrome and leave the baby with significant impairments on the quality of life (Lantos, Neonatal Bioethics, the Moral Challenges of Medical Innovation, 2006) .
This heated debate came to a head with the Baby Doe controversy in the 1980s. This case was instrumental in forming the foundation of neonatal ethics of practice as we experience them today. To briefly summarize the details of this case: In April 1982, a baby was born with Downs syndrome. He had a tracheoesophageal fistula, which is a condition where there is an interruption of the esophagus making it impossible to digest food. This abnormality is routinely treated successfully with surgical repair. The parents of Baby Doe (thus nicknamed in court) declined the lifesaving procedure, claiming that because of the nature of the baby’s diagnosis his quality of life would be unacceptable and further treatments would not be in the baby’s or the families best interest. The hospital in which the baby was born filed an emergency petition to override the parent’s refusal of the surgery, but this process was stalled and eventually dismissed because of the baby’s death due to lack of nutrition (Lantos, Neonatal Bioethics, the Moral Challenges of Medical Innovation, 2006) . This may have been the end of the controversy too, if not for the political climate in our country at the time. Instead, the ripple effect of this tiny life fading away was huge and far flung.
Since the Reagan administration was eager to protect what they saw as the sanctity of life, the president himself demanded that federal law be used to prevent such cases from happening again. President Reagan went on to address this case in his famous article titled “Abortion and the Conscience of the Nation.” He wrote: “The real issue for the courts was not whether Baby Doe was a human being. The real issue was whether to protect the life of a human being who had Down’s Syndrome, who would probably be mentally handicapped, but who needed a routine surgical procedure to unblock his esophagus and allow him to eat. A doctor testified to the presiding judge that, even with his physical problem corrected, Baby Doe would have a “non-existent” possibility for “a minimally adequate quality of life”—in other words, that retardation was the equivalent of a crime deserving the death penalty. The judge let Baby Doe starve and die, and the Indiana Supreme Court sanctioned his decision.”
Once the federal government became involved the fat was well and truly into the fire, so to speak. Denying a baby treatment based on his supposed or future handicap became a violation of civil rights law. This created many unforeseen consequences that not only affected the practitioners involved but whole hospitals which depend on federal funding. Eventually, after much confusion and resentment from all sides the U.S. Supreme court invalidated most of the legislature from the Baby Doe case. But many will argue that the damage was already done, the seeds of doubt and suspicion towards doctors planted. “One implication of Doctor’s inaccurate prognostications was a recognition of the need to include parents in these decisions in a new and different way. In the 1970s, doctors assumed that they understood what was an acceptable and what was an unacceptable quality of life. Following thinkers like Silverman, Shaw, Duff and Campbell they also assumed that parents trusted them, shared their values and did not want aggressive life-sustaining treatments for their babies if the prognosis for neurological outcome was poor. It turns out they were wrong, both about their understanding and assumptions about what parents wanted. For many doctors, this was one of the biggest surprises in the Baby Doe debate” (Lantos, Neonatal Bioethics, the Moral Challenges of Medical Innovation, 2006) . As it turned out, doctor decisions and actions suddenly were under scrutiny, and not just by parents and patients, but by the hospital and the state as well. And so, with the advent of the Baby Doe case, the bioethical issue of “medical futility” was pushed into the spot-light, and became one of the primary factors in care decisions of neonates. This new trend even began to come out in adult intensive care units, when physicians and patients began to raise questions about treatments and therapies in terminal illness such as metastatic cancers. Before Baby Doe, a doctor would either order a treatment, or withhold a treatment as he saw fit, while still persevering the illusion of patient autonomy. This illusion came apart as the debates raged on all sides for the search of the true definition of medical futility. However, the argument wasn’t based on the basic moral principles of not offering treatments but rather it focused on the practical application of these principles in their day to day work. The real issue lay in not having clear guidelines and parameters to specific situations and cases. Just when doctors were figuring out care based on “prognosis” a unique case would come along that would throw everyone into a tailspin of confusion.
Nancy Rhoden, a well-known thinker and law professor summarized this problem: “The difficulty, of course, is in making accurate predictions. Extremely premature infants are very susceptible to intraventricular hemorrhages – bleeding in the brain. Many British doctors said that a few years ago they would have withdrawn treatment from a baby having a Grade IV hemorrhage – the most severe level – because it is highly correlated with death or profound brain damage. But recent data have shown that some infants may be only mildly impaired by even a Grade IV bleed if it is relatively localized within the brain” (Lantos, Neonatal Bioethics, the Moral Challenges of Medical Innovation, 2006) . The problems thus arise form a lack of data or knowledge available to the doctor who is dealing with the case, and so everything hinges on his own experience or gut instinct as to the appropriate action. There just weren’t enough procedural guidelines, not because there wasn’t a need, but because that need for moral guidelines always came a little too late; following on the heels of medical innovations and biotech. Rhoden writes in conclusion that… “Sometimes treatment will yield an infant so devastatingly disabled that death would have seemed preferable. Likewise, doctors may withdraw treatment from a baby who possibly could have survived relatively intact. Doctors will agonize over decisions. Parents will agonize as well…Doctors and parents may later regret their decision or be tormented by it. This agonizing, however, is only commensurate with the tragic nature of these dilemmas. In fact, those approaches that minimize it may be inappropriate for precisely that reason. When medical uncertainty leads to moral uncertainty, it seems preferable, albeit harder, to confront these dual ambiguities than to bury them under either statistical criteria or unrelenting moral certitude” (Lantos, Neonatal Bioethics, the Moral Challenges of Medical Innovation, 2006) . So, in response to the general outcry of physician ignorance and incompetence, in the mid-1980s, several different databases such as the National Institute of Child Health and Developmental Neonatal Research Network, were established around this country and through-out the world (Lantos, Neonatal Bioethics, the Moral Challenges of Medical Innovation, 2006) . The point of these centers was to provide a framework in which doctors and facilities could share their data and case statistics with each other, thus providing a sort of checks and balances of action and practice. In this way, it also became a repository of information that could help in future cases. The advent of these data centers became the first steps to create working guidelines for physicians dealing with tough cases. This resource is still functioning today and provides the foundational stones upon which physicians build their decision-making process.
It was decided in the end, that Baby Boy D would be transferred to the NICU. The cesarean delivery was routinely uneventful, though extracting the baby’s large and misshapen head out of his mother’s body was tricky and took a better part of an hour. The mother was given extra sedatives and was consequently unable to keep in a conscious and decision conducive state, and so, all the members of the team looked to the father to fill this parental capacity. The father, sitting in a sterile room right off from the operating theater where his wife lay senseless to the unfolding drama, cradled his newborn son in his arms, surrounded by a team of highly qualified professional individuals who did nothing except watch. The young southern nurse, all scrubbed up and present, had volunteered for that timeless duty of carrying the newborn to his father in this private room and placing him gently in his arms. Having done this, she stepped back behind the circle of faceless doctors who were poised, much like sleek thoroughbreds at starting gate, muscles quivering, every nerve straining to hear the starting bell, but in vain as this call to action never came. The parents had, in so many words, told the team prior to delivery, that they would not like any aggressive life sustaining measures preformed on their baby, in the case of his struggling with life “on land.” And so, they stood like sentinels, watching silently, clinically, as the young father cradled his strange looking son, tears in his eyes as he carefully smoothed the translucent newborn skin. The nurse did not know how long this moment lasted because in her mind it seemed frozen in time, like an elaborate and dramatic tableau, comprised only of actors. Everyone had eyes only for this new little life, and his pathetic and heroic struggle to prove to them, his judges and saviors both, that he was to LIVE. And so, eventually, for want of a better spot, he was placed in the NICU as his mother was still mostly comatose, and the father anxious to see to her welfare after the long surgery.
Baby Boy D, or Leo the lion, as he was later affectionately dubbed, lay in a quickly modified memory foam nest which was cleverly created for him by the hospital’s physical therapist out of a wheelchair seat pad. This had to be done because if the baby was placed flat, the curve and angle of his abnormal head would restrict his delicate airway. And so, the PT carved a sort of bowl shaped indent which could take the weight and shape of his head, and provide the proper alignment for his neck and shoulders. And this was just the beginning of the NICU staff’s ingenuity and creative acts to help the little lion fight his way to life.
Unlike every other single baby in this place, Leo had only a simple pulse-ox monitor clipped to his big toe. Because of this, the nurses would often take him for a little walk-a-about, either around the unit, or down the hall to visit his parents. His parent’s room, or really the room which housed his mother as she was recovering from the operation, was not a very restful place, so the nurses tried to keep him in his little corner room with the window as much as possible. The reason for this unrest, was the steady stream of physicians coming and going, each with their own sets of conflicting and confusing advice and treatment plans. The mother, exhausted, pumped full of powerful medications, finally could stand and hobble to the bathroom. After letting the water gently run and tumble over her hands, she stares at her reflection in the mirror. She does not recognize the woman who stares back at her. Coming out, she tells her husband sorrowfully, “I am not me anymore.”
The next day, at just 24 hours old, the baby gets a sonogram of his head. The results are the same as the in-utero scan, nothing has changed and no new information can be gleaned. The baby’s cranial cavity is completely filled with cerebrospinal fluid and no brain tissue other than a basic brain stem can be seen.
At this point, the neonatologist returns. Taking both parents out into a sunny courtyard, the father carefully wheels his wife in a wheelchair and sets the brake with precision. The small intimate outdoor space is adjacent to the birthing wing, and there he tells them of his thoughts and informs them of their future options. The first, and most pressing topic that he needs to be cleared by the parents is the issue of nutrition. The mother has been pumping almost automatically, assuming that eventually she will be able to feed her son. The neonatologist, his ever-present pen held in his lap, the cap flicking left – right – left, gently tries to inform them of the intricacies in the decision of starting nutrition… or the withholding of it.
“You’re saying I don’t have to feed my baby?” The mother’s eyes are shocked, her eyes red and puffy from hours spent in tears. “But…I don’t understand…doesn’t that mean he will die?” Up to this point in the conversation, the word death has not been uttered, but now, with the sudden and startling pronouncement, the sunny courtyard seems less sunny, and almost obscene in its peaceful tranquility.
“In some cases,” the neonatologist speaks carefully, “withholding nutrition can be a blessing and a kindness. The process is minimally painful and most babies just fall into a gentle sleep from which eventually, they do not wake. I have guided parents through this process before, and I would be there with you every step of the way. I want to let you know there is no pressure on you to decide either way, but I would like just for you to be fully aware of the options available to you now. There is no cure for your child’s condition, in all like hood he will not live long, but if he does it will be a very limited and hard life for you and for him. He does not have the capabilities to take in food orally, or to even understand or recognize the things or people around him, he doesn’t have the faculty to feel pain or most feelings or emotions. Eventually he will need a feeding tube, perhaps even a breathing tube. You have already specified your intention to not pursue any aggressive treatments and I think this was a wise decision considering the circumstances. Many parents request us to pursue the limits of viability past reason, and with disastrous outcomes. I am only offering this option to you as you have already seen the wisdom of not pursuing treatment for this baby.” After this shocking speech, the mother, pale and shaken requests to be taken back to her room.
Try to imagine what it feels like to be told this kind of information about your baby. You are reeling and upset, and yet, the pressure is on and it is unlike a pressure you have ever known, it truly is a matter of deciding between life and death. In the movies, life is the desired outcome, but in this situation, could death be the right outcome? According to John Lantos who is a doctor and an ethicist, there doesn’t seem to be a quick and easy answer: “Babies whose lives are saved but who are left with severe heart, lung, brain, or intestinal damage become hostages to technology, as do their parents. Doctors who pursue survival at any cost, who err on the side of life, can be seen as morally pure or as morally simplistic, as ultimately responsible to an appropriate goal of medicine or as profoundly irresponsible and insensitive to the needs of real human communities” (Lantos, The Lazarus Case, 2007) . When viewed through this lens, perhaps the neonatologist’s suggestion is a compassionate act: an attempt to head off a potentially devastating and life changing circumstance for this young couple. His many years’ experience has taught him that an early but peaceful passing of a baby with such severe defects ultimately ends up being an easier burden for parents down the line than a child completely dependent on harsh medical intervention for survival. There are few guidelines that this doctor can follow, no protocol that has been established for this case specifically, and even if there was, he cannot make these decisions on his own. He must first think of the rights of this young couple; their wishes, their hopes and expectations. This treatment process first involves getting to know the family of his tiny patient. Only after that can he develop a reasonable approach to treatment and be ever vigilant of the ethical pitfalls yawning on either side.
This process of decision making has been built on the bones of court cases and malpractice suits. He has no choice but to offer the shell-shocked parents the full and honest view of the situation as he sees it. In some cases, the path is clear and straightforward, and the medical decisions obvious to everyone. But in a case like this, where there is little reasonable hope for any kind of quality of life? Can he honestly fulfill his role as a responsible physician and make the proper care treatments, while fully preserving the parent’s autonomous decision making rights? This is a fine line to balance since to lean too far one way, can result in doctor paternalism, and too much in the other direction, his own autonomy and beneficent duty is threatened. The book “Bioethics, Principles Issues and Cases” outlines this balancing act very succinctly: “Physician – patient conflicts also surface when patients demand treatments that the physician thinks inappropriate. These clashes are about medical futility, the alleged pointlessness or ineffectiveness of administering treatments. Physicians often appeal to the principle that they not obligated to provide treatments that are inconsistent with reasonable standards of medical practice” (Lewis, 2017) . Therefore, it is clear, that this neonatologist in question, would not have offered up the option of withholding nutrition if he did not see it as an acceptable option and a possible next step in the care of little Baby Boy D. Whether the parents of the child think the same, remains yet to be seen. If he will live or fade away depends also on his parent’s decision. There is no way the doctor can make this decision without their written consent.
“I don’t understand,” Leo’s mother stands by the hospital room window, her hands held tensely by her sides in tight fists. “Did he really mean we should just watch him starve to death?” The father, slumps sadly in a chair, his head in his hands and does not answer. “I’ve been pumping,” she continues, “and I definitely have milk to give him, but perhaps the problem is that he is so misshapen that he can’t take a bottle?” Her questions do not receive an answer. Later, the sad stillness of the room is broken by the sharp ring of the bedside telephone. The father makes no move to answer so she tentatively picks up the jingling instrument. It is one of Leo’s day nurses, and immediately she feels a sharp surge of adrenalin, could this be the bad news they have all been waiting for? But no, the male nurse reassures her that her little lion is fine and currently napping. However, he the nurse, has been doing some extracurricular research. He explains that the is working towards taking a Nurse Practitioner exam and in one of his tomes he read about the care of babies who have a similar condition to Baby Leo. Consequently, he has made up a device out of a syringe and a bottle that he thinks will make it possible for Leo to drink. Would it be ok with them, if he tried to dribble a little bit of the milk she already pumped into his mouth? The mother, gripping the phone, pauses only an instance; it only takes a second for her to say yes, to say yes and to take the first step of the path that means life for her son for better or for worse.
The hardest choices, though based in fact and science by the medical staff, are ultimately driven by emotions on the parental side. In a study which examines parent perspectives at end of life in the NICU, it became evident that parents needed to feel a semblance of control, and though they also wanted to differ to medical expertise, most decisions were based on emotion which was guided ultimately, not by the physician, but by the real patient in the equation: the baby. It is reasonable to assume that if the parents are emotionally connected to their baby and they see him in great suffering, they will decide anything that will bring a stop to his pain, even if it means the end to his life. If the baby seemed ok physically, the parents were more reluctant to make conclusive end of care decisions. “Decision – making was a complex process that was guided by what the parents perceived to be in the best interest of the infant. The infant’s appearance and cues as well as parents hoping to have more time together also influenced decision making. Parents often made decisions based on their interactions with their infant. One mother felt as if she could tell when her son wanted to fight for his life based on his behavior” (Currie, 2016) .
This maternal gut instinct is often the driving force behind tough NICU decisions. And this instinct goes beyond any bioethical concern, or controversy. It spans eras; before there were NICUs and it is assumed that it will continue to function in the future. It doesn’t matter how far we go into the realm of biotechnology, and how many new ethical issues we generate with this; love, and often the unwavering hope of life, will always guide the best decisions.
Leo the lion not only was able to take in the precious drops of milk fed to him by syringe, but he did so with gusto. Initially, this caused his mother to feel a tiny glimmer of hope as at the same time it relieved her of that terrible and unnatural guilt of not providing nourishment to her own son. The gratitude she feels towards Leo’s nurse, the one who took it on himself to help her out of the terrible quandary the neonatologist created for her, would she felt, last the rest of her life. However, as time passed, it became evident to all that something would have to be done about the growing pressure in the little boy’s skull. Another kindly nurse from the night shift left a knitted hat on Leo’s bassinet. It is heartbreakingly large and sized for an adult’s head, and when Leo’s mother gently maneuvers it onto her son’s it is even a bit tight. She worries about skin breakdown (before this week in the NICU she had never even heard the term skin-breakdown.) It is not the only thing breaking down around here. The tears flow steadily at Leo’s bedside throughout the day. A social worker comes by and leaves a flyer advertising a local pediatric institution for retarded and medically fragile children. Both parents stare tiredly at it and place it on the table, where it will eventually be swept into the trash with the rest of the garbage.
The next conversation with the neonatologist has a much different feel to it than the last one. They talk again out in the courtyard where the setting sun casts warm shadows and dapples over the faces and walkways. The couple sit side by side on a wooden bench their backs to a creeping ivy gently letting down tendrils to caress their slumping shoulders.
“He is in a lot of pain…I know you said he can’t feel pain, but this is very clear to me…he is screaming in pain from the pressure in his head.” The mother informs the doctor. What is to be done? Prior conversations about shunting have been rejected based on the expectation of Baby Boy D’s imminent demise, but with every day that the death seems less and less imminent. “The nurse had to give him morphine today, he was screaming so loudly and for so long…” The mother wrings her hands in her lap, even though it took her several days to bond with this strange child of hers it seems now that the maternal instincts are functioning as strong as ever. The neonatologist has been thinking of nothing but the plight of this family over his short weekend at home, and he has come to a decision of his own. It seems to him that fate, or whatever one who is a medical professional can call it, has taken things out of his hands. He still believes the boy’s diagnosis to be a death sentence, but regardless of what he feels the future outcome to be, the boy is alive now and in considerable pain. Medical futility or not, he is not a doctor who can sit by while a baby is suffering without doing anything to help. He informs the parents that they can go ahead and put a shunt in to drain the fluid out of his brain and relieving the painful pressure, but only if the parents are fully informed and understand that this is a comfort measure only, not a treatment or a cure for his condition. If the shunting surgery will go as planned, without any unforeseen results, the baby can go home with his parents in a couple days. A social worker will explain the procedure of hospice care and the visiting nurses’ association. Once the boy leaves the NICU, other professionals will take over, and his job will be done. He feels that he has done his best, and that the parents are brave and will probably be able to handle the coming ordeals of keeping a baby with no brain alive, however much it would have been better had the little guy passed peacefully at birth. He sighs and searches his pocket for his ever-present pen, only to realize that it is lying back home, on his office desk where he had been sitting for the better part of the day, thinking: his pen cap flicking left – right – left, the as only indicator of his unease.
The next day, the neurosurgeon who will be performing the surgery comes in and finds only the mother by the baby’s bed. The mother sits aimlessly, her gaze fastened on the baby lying in his memory foam nest, a fuzzy blanket with a lion gamboling across it draped tactfully over the top of his head. The neurosurgeon feels a sudden stir of pity and so she blurts out: “You know, I think it is too early to make any kind of prognoses about this baby.” She is rewarded by the mother’s gaze lifting from her baby and fastening intently on her. Emboldened she continues “Yeah you know, it is just so hard to really see what it is going on with the brain when there is so much fluid in the way. I think no official diagnosis should be made until after shunting. I have, in my years, seen other babies who presented one way before shunting turn out completely differently after. Or if not completely differently, at least it gives them a fighting chance and the rest of us a better prognostication ability.” She adds this last bit quickly, ever aware of saying something that could come back to haunt her in a law- suit. You could never be too careful, especially as a pediatric brain surgeon. But despite her cautious words, the baby’s mother undergoes a transformation, her face, so morose and listless just a second ago, comes to life. Her eyes take on a shine, and she instinctively reaches out to put a gentle hand on her baby’s back. “That is the most wonderful thing anybody has ever told me since my son was born.” She looks up at the doctor, a tear rolling down her cheek. “Thank you.” She says, and a true smile, maybe the first one in days, twinkles into existence like the first joyful shine of the evening star.
Baby boy D, known as Leo, was shunted successfully and sent home on hospice care. He had a visiting nurse see him every week as well as a physical therapist. Proper positioning was key and soon he was not just taking a bottle, but able to breastfeed as well. At two months old, he gave his parents the first lovely toothless grin which was to become his trademark expression, and one that could not fail but endear all who saw it to him forever. At six months, he tried to roll over, but the weight of his head made it impossible. At seven months old, during a routine neurology checkup where his mother again braced herself for an onslaught of hopeless prognosis details, she was instead surprised when his doctor finally noticed the aspects of this little boy that they have been living with from day one. An MRI was called for and the results were completely astounding to the doctors, but was no surprise to his parents, showed that the Little Lion had a fully complete cortex and cerebrum; in fact, almost every little bit of brain was seen in crisp detail, where once before there had only been bottomless fluid. The professionals could not explain it. How a baby practically at death’s door, could undergo such a complete turnaround in every aspect of his previous diagnosis. They expostulated that perhaps this doesn’t change anything, that probably he will still be just as devastatingly disabled, but at this point, the experienced parents knew when to listen and when to let the words wash over and around them. Leo was talking to them, and that is all that mattered.
Today Leo is six years old. Since his fateful stay in the NICU he has had to undergo many invasive procedures and surgeries, most dealing with the maintenance of his shunt, and two major OPs to reconstruct his skull, which gave him a chance to hit milestones. Within weeks of healing up with his new skull, Leo started to roll over, sit up, crawl and then at the age of three, he started walking and even running. He is now entering first grade this fall and his favorite things to do other than give hugs, play trains, dance to his dad’s reggae music, is to sit quietly in his mother’s lap to watch the stars twinkle into existence in the evenings.
While it is true that not every baby with a devastating diagnosis will survive their sojourn in the NICU, and while not every baby will have such a drastic reversal of prognosis, they are all subjected to the same level of clinical decision making protocol. In each case this process is valid and essential, but if taken by itself without the special ingredient of love and especially hope, permanent harm can be done to all involved. Sometimes those decisions are made with little or no preparation or adequate time in which the family can process or seek outside help.
Some decisions are made purely by chance, depending on which parent was available when the doctor appeared. Classic “doorknob” questions (when a doctor is on his way out, the patient/parent thinks of one final and critical question) is the gateway for life altering decisions which generates more stress in the affected family. When it seems that all the treatment choices happen by pure chance, trust and confidence in the physician is broken. When the patient is not an autonomous adult but a baby, the doctors are faced with not only the immediate medical demands but also with the emotional wellbeing of a whole slew of people. Mothers, fathers, grandparents, relatives, the list could go on and on, and so do the aftershocks after a traumatic medical experience. With the introduction of biomedical innovations responsible for the ability of sustaining babies who would have otherwise died, comes a new demand for clarity in how we view these life-saving capabilities. There is a reaction to any action and the consequences of thwarting “nature” are far reaching and often unforeseen. There is a danger in “normalizing” these manipulations of human life, and in taking them for granted, without full understanding of the consequences. There are so many people who because of medical innovation are essentially “dead men walking” and who, by merely existing, are changing the paths of the world around them. But this profound ability of creating new dimensions into human life should never be taken for granted.
When situations involving serious life changes are “normalized” to minimize harm, the opposite occurs. There is nothing that can be “normal” about a sick baby in the NICU. True healing comes not in denying the harm, or renaming it, but only in the complete acceptance and full acknowledgement can healing begin to take place and lasting trauma be avoided.
In conclusion: there are no manuals that can tell parents what to decide, and no doctor that can decide for them. The process of these life and death choices more readily resemble a complicated negative feedback loop, instead of a directional person to person line. Parents ultimately decide the fate of their baby and of themselves not just from the scientific line of reasoning presented by their doctor, but also from their emotional center which, in part, is influenced by the initial information provided from the physician. The other factor also effecting the flow of decisions is the parent’s unique and diverse character make-up. Thus, when dealing with questions of care in the NICU, there are no generalized right or wrong answers. Each situation, each new baby, is an opportunity for deeper education into understanding and respecting the value of unique personhood. Each new case is an opportunity for doctors to refine the way they present the critical information so that it remains free from personal judgment, expectation or biases. As our ability to thwart nature grows, so should our respect for it and for each other, no matter how little we are, how long we live, or how imperfect our existence. Life despite it all, is a joyous miracle, and every new baby is “fearfully and wonderfully” made (Psalm 139:14).
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