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The Yellow Baby
PREFACE: Nadine Gordimer, the Nobel Prize–winning South African writer, describes her art as follows: "Instead of simply pondering on a question, I will invent a story that encompasses the question and try to see how it is answered by people’s reactions and their emotions." To date Narrative Matters authors have pondered many questions of health policy but all have used a nonfiction, first-person format. In the belief that fiction, too, can bring light to the dilemmas of health policy, we offer two short stories that are sure to elicit reactions and emotions. The first, by Fitzhugh Mullan, relates an infant’s death in a public clinic and a doctor’s troubled quest to understand who is to blame. Alok Khorana’s story tells of a young physician ministering to a dying patient while contemplating his own impending marriage.
When Tim Greene arrived at the clinic, he knew something was wrong because a police cruiser and a rescue squad ambulance were parked askew in front. He loped past apprehensive faces in the waiting room and pushed through the knot of paramedics and office staff at the treatment room door. Inside he found two of his fellow physicians, several nurses, and a paramedic huddled over a small, inert, and very yellow infant. An IV dripped, and multiple electrical leads connected the baby’s tiny frame to a monitor. The mood in the room was tense. Dr. Moreno, gloved and sweating, looked up from the ventilator balloon she pumped rhythmically. "Basically D.O.A.," she said to Greene. "Damn it, we’ve done everything like clockwork. Everything. But we can’t get a pulse back. Look." She pointed to a monitor in the corner of the room showing a series of flat lines. "He’s your patient." The words exploded in him. His patient. His patient? This small, yellow, moribund creature was his patient. "Who is he? What happened?" Setting the balloon down, Moreno looked at her team. "It’s been forty-five minutes. We can stop now. Sorry." She leaned against the wall and looked at Greene. "I don’t know the whole story, Tim. The baby is two weeks old. Apparently you saw him for a checkup a few days ago. The mother brought him in this morning, jaundiced, bundled, not breathing, a threadbare pulse that disappeared. We never got it back. That’s all I know. Babies shouldn’t die. Not like this." The nurses turned off the monitor and began removing the electrical leads. Your patient is all that Greene could hear. "Is there a chart? When did I see him? Did I know he was sick?" "Here’s what we have." Moreno handed Greene a slim medical file. Baby Cruz, later named José, had been born at the local public hospital fifteen days earlier weighing a respectable eight pounds six ounces and went home two days later with his mother. His hospital stay had been routine, although the discharge note recorded "minimal jaundice" and a minor blood-group incompatibility between mother and child. The record indicated that follow-up care would be at the Valley Health Center. José Cruz’s mother had dutifully brought the baby to the clinic for a checkup at ten days of age, and Greene had seen them. Greene remembered José now, a cute, active infant, whose skin was tinged with yellow—a mild jaundice. Greene also remembered Mrs. Cruz’s story, one much like many of the clinic’s patients. She had come north to the United States in search of work and without papers. She had no health insurance, no money, and, "illegal" as she was, no Medic-aid. The local hospital delivered her with neither enthusiasm nor questions and sent her and her baby to the Valley Health Center, whose mission was caring for the poor and uninsured. Greene, Moreno, and their colleagues treated hundreds of patients like the Cruzes and were well equipped to deal with the basic medical needs of their families—well-child care, respiratory infections, gastroenteritis, diabetes, hypertension, and the like. But things became more complicated when a patient needed something that the health center couldn’t provide on site, such as consultations, medications, hospitalizations, and lab tests. It was a lab test that José Cruz needed at his visit with Greene five days earlier. The blood incompatibility between mother and child was the likely cause of the jaundice. Greene’s conclusion at that visit, recorded in the chart and in his memory, was that the baby looked fine but that the jaundice needed to be tracked. Even though Mrs. Cruz didn’t qualify for Medicaid, José, an American citizen, did. But making this theory a reality required Mrs. Cruz to present herself at the proper government office with José’s birth certificate and evidence of her meager income. It would also take time and patience. Greene did not have time. He filled out the requisition for the lab test, a bilirubin level, as well as a form that would authorize the lab to charge the health center the $75 for the test. Later that day the lab called Greene to inform him that the bilirubin was 10.5, an elevated level consistent with the baby’s hue but not dangerous. Greene reached Mrs. Cruz by phone, explained the test results, and gave her an appointment for José in one week. He told her, however, that if the baby became more jaundiced or showed any signs of decreased feeding or activity, she should bring him back at once. He had not heard from Mrs. Cruz since that phone conversation. There was pandemonium in the waiting room. Dr. Moreno had informed Mrs. Cruz of the baby’s death. She was sobbing in a corner, comforted by several distraught women. The paramedics were packing their gear, and a dozen other patients besieged the receptionist, wanting to know what was happening and when they would be able to see a doctor. Greene needed to talk to Mrs. Cruz for her sake and his. He entered the waiting room with warring emotions raging through him. José was his patient. Greene had only seen him once, but José’s little life had been in his hands. "How could this have happened?" he demanded of himself. "How could I have let him die?" Greene watched Mrs. Cruz, disheveled, tear-streaked, empty-handed. "She was the mother," he reminded himself. "She was his source of life, his protector...his mother. How could she have let him die?" Mrs. Cruz sat coddled between two large women, crying hard. "I am sorry for what happened," Greene said in fluent Spanish. "I am so sorry." He squatted in front of her and put his hand on her arm. She continued to cry. "They did everything they could for José. Everything medically possible." She said nothing. She continued to weep silently, looking first at Greene and then beyond him. "What happened?" he asked, the inquisitive and the accusative rising together within him. "How did he get so sick?" She shook her head, sobbed, and said nothing. "Why didn’t you bring him back to see me?" Greene waited another minute feeling very uncomfortable. He stood. "Mrs. Cruz, I am so very sorry." Greene had no idea how to deal with the death of the baby. The police came and interviewed everyone, investing the sad scene with a criminal tinge. The baby’s body was shipped off to the medical examiner for autopsy, and the health center staff tried to piece together what had happened. Greene himself felt mostly guilt: Why hadn’t he ordered a repeat bilirubin or seen the baby back sooner or been sufficiently vigilant to foresee trouble? But his guilt was tempered by an occasional burst of anger: How could she let the baby die? The autopsy report was nonspecific, concluding that the baby’s death was caused by heart failure associated with congestion of the lungs. It noted that jaundice was present. The police were satisfied that foul play was not involved and closed the case quickly. The health center staff concluded that their emergency drill had functioned well. " ‘I am sorry for what happened,’ Greene said in fluent Spanish. ‘I am so sorry.’ " A week after José’s death, Greene called Mrs. Cruz and asked if he could see her. She agreed, and that afternoon he climbed down a crumbling, graffiti-ridden stairwell to the basement apartment she shared with relatives. Mrs. Cruz was a small, sturdy woman in her mid-thirties with straight black hair and Mayan features. She wore black and seemed sad but resolute. "Thank you for coming, Doctor." Greene wanted to know exactly what had happened to the baby but felt intrusive asking directly, so he queried her about herself. "My husband died. We had no work. I left my two older children with my mother and came here to America. I am making money to support them and, maybe, to bring them here with me. I did not mean to start another family, but when I became pregnant I was happy to think that I would have an American family." She talked easily and did not seem angry with Greene. She explained that she had two jobs, one cleaning an office building weeknights from four to midnight. On weekends she spent twelve-hour shifts washing dishes in a Chinese restaurant. She described her work with neither pride nor complaint. Greene asked about her trip north. "Three years ago I left my children. That was hard, but I know they are well cared for." She borrowed all the money she could and started by bus across several borders and through Mexico. She was often molested by men along the way. At the U.S. border she paid a "coyote" three thousand dollars to smuggle her into the country in the back of a garment truck, huddled with five others, surrounded by racks of ball gowns. She used her last money to take a bus north to join her cousin, who found her immediate work. "The work is difficult. I do not speak English and there is no time to learn. But I can make money to send home for the children and save a little to bring them north. It is not a happy life, but I am happy for the future." Mrs. Cruz knew little about medical care. She had borne her previous two babies at home and had never been to a hospital. When she became pregnant with José, she waited until she was ready to deliver, fearing deportation. "I was surprised," she reported. "Many people in the hospital were nice to me. Some even spoke Spanish. When I went home they told me to go to your clinic with José to get an appointment for his care." "That’s when you came to see me?" asked Greene. She nodded. "Forgive me for raising a difficult topic, but could we talk about José?" Greene paused. "I’d like to know how he got so sick. Could you tell me about it?" The face of this plain-spoken woman from the Central American countryside darkened a little. "Doctor, José was never a strong baby. Yes, he took the breast and gained some weight, but he was always yellow and weak. After visiting you, I kept feeding him, but soon he began to suck less. I could tell because my breasts were still full when he was done sucking. And he was more yellow." With more of an edge than he intended, Greene asked, "Why didn’t you come and see me? Why didn’t you bring José in?" "I did," she replied. "I brought José back as you told me to do. It was in the morning. The clinic was very busy. There wasn’t even a place to sit in the waiting room. When I got to the lady at the desk, she didn’t speak any Spanish. Another mother translated for me. I told her the baby was sick and needed to see you. The lady said you were too busy and I already had an appointment scheduled with you. I should keep that appointment and if there were problems before that, I should go to the emergency room." "She said that?" Greene groaned. "She really said that?" Mrs. Cruz nodded. He envisioned the chaotic waiting room on a busy morning and the uncomprehending negligence of the frazzled receptionist. "What did you do?" "Since I had no money to pay, I waited to go the emergency room until the next day. The baby was eating very little and the yellow was worse. Then I went. I never saw anybody there but the billing woman, who told me that since I didn’t have Medicaid, I needed to go to the Valley Health Center. When I told her that they were too busy to see me, she said that was not her problem. The health center was for patients like me who had no insurance. What she said was wrong, but what could I do? I took José home and gave him the breast, but he hardly sucked. He cried less and was very weak. I tried to give him rice water and put a [good-luck] bandage we call a fajero on his stomach. That night his cry was quiet. I knew he was very sick. I knew you had to see him, so in the morning I took him to your clinic the first thing and told the woman I thought he was dying. She took me right in that time." Greene looked down at the worn, dirty linoleum that covered the floor of Mrs. Cruz’s basement. He felt terrible remorse. He had not been vigilant. José had died without his care. What had he been thinking? Had not all his training as a physician taught him that the first weeks of life were the most vulnerable? He should have scheduled José sooner. He should have repeated the bilirubin. He should have figured out that José was sick—blood problems, infection, dehydration, liver disease, meningitis, whatever. Mrs. Cruz watched Greene study the floor. She was sad for José, but she also felt a sadness for this doctor who seemed so upset. Even as he fretted about his role, he cast about for other explanations for the death—and they were not hard to find. I can’t be responsible for everything that goes on, he thought. Where was Medicaid when José needed it? She ought to sue the hospital. They turned her away without so much as an exam. But the ER was not any worse than Greene’s own front office, he had to admit. Busy, yes, but murderers? Who was on the desk who knew so little as to turn away a twelve-day-old whom the mother said was sick? Surely the front desk was to blame, or the hospital, or the Medicaid system, or the people in the state capital or Washington, or somewhere. I’m a doctor, Greene thought. I’m not a social worker or a politician. He looked up and saw Mrs. Cruz watching him with resignation. And yes, Mrs. Cruz, he found himself thinking, you’re to blame in this. Why were you so polite? Why did you go home when the bureaucrats told you to? You were giving the baby rice water when you should have been banging on the clinic door. Reflecting on the sturdy, benevolent face of Mrs. Cruz, he recoiled from the meanness of his own thoughts. This woman had traveled thousands of miles to clean floors and wash dishes in a city where Greene lived. She brought her quiet rural customs and personality with her and took her chances with the U.S. medical system. Finally, Greene said, "I don’t know exactly why José died, Mrs. Cruz. It could have been a number of things. The autopsy didn’t give us the answer. Whatever it was, a lot of people let it happen. José was born in America, and we didn’t pay enough attention to him to keep him alive. I am sorry. All I can do is apologize to you—for me and for the others." She ran her hands over the folds in her long skirt. "Dr. Greene, I know that you tried and that you did not want José to die." A ray of sun shown through the small basement window above her head. "I am a woman, Doctor, and there will be more Josés. Perhaps you will take care of them." Greene felt tired as he climbed the stairs and walked back out into the afternoon light. "I’m a doctor, Greene thought. I’m not a social worker or a politician."
Fitzhugh Mullan is a pediatrician, writer, and editor of the Narrative Matters section of Health Affairs. His most recent book is Big Doctoring in America: Profiles in Primary Care.
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