What takes place in the neonatal intensive care unit is the high drama of real life. The author pulls back the curtain to show the inner workings of this area in the hospital that is unfamiliar and frightening to most people. Hall, a longtime neonatologist and former social worker, writes with caring and compassion about the challenges each fragile baby must surmount in order to survive and thrive, all the while conveying a sense of life-and-death urgency that permeates neonatal intensive care. She expertly weaves the social and emotional threads of each family’s journey into their baby’s story, and also speaks candidly about the stresses and difficult decisions that neonatologists and their tiny patients’ parents routinely face.
Taken all together, the sixteen stories give an insightful, vivid and moving portrayal of life in the high-stakes world of the neonatal intensive care unit.
This book is for anyone who has wondered how doctors and nurses work under intense pressure to diagnose and treat the smallest of patients, and how parents of these infants cope with the emotional ups and downs that are part the daily rhythms of life in the NICU.
Excerpt - Chapter One
The Resurrection of Charlie Nash
"Where's the kiddo?" I asked.
"Hi, Dr. Hall. He's right over here." Carrying her clipboard of papers, Dr. Tanya Runyon crossed the Neonatal Intensive Care Unit ahead of me and stopped in front of a baby as orange as a pumpkin.
Wrong holiday , I thought, when I saw the baby. It was the night before Easter-nowhere near Halloween.
"Hey, baby," I said, preparing to examine the baby that lay stretched out on an open bed in front of me. "My hands may be a little bit cold."
"Do you always talk to babies?" Dr. Runyon asked. "They can't talk back."
"Yes, I always let them know what's coming, especially if it's my cold hands."
The baby lay under a triple bank of phototherapy lights, which radiated an eerie blue glow. Wearing a black mask over his eyes for protection, he looked as though he were enjoying his own personal tanning booth. He appeared sturdy and healthy except for his orange skin, a sign of jaundice. As I put a stethoscope over his chest, he pushed it away with his hand. How is a newborn capable of such intentional action, I wondered. Did he know what was coming?
After I examined the baby, I told Dr. Runyon, "If we're going to do an exchange transfusion, we need to get consent from his parents. Do you have the paperwork ready?"
Late that afternoon I had received a call at home just as my preschool daughters and I finished dipping hard-boiled eggs into cups of pastel-colored water in preparation for Easter. As a newly minted neonatologist taking calls about patients from home instead of staying overnight in the hospital, I felt frustrated at being pulled away from an annual tradition my daughters and I enjoyed together. Balancing motherhood and work created an uncomfortable tension in my life that was not easily resolved, especially when my daughters protested my departure, as they did on this afternoon.
As I left my children to drive to the hospital, I thought about how the task awaiting me there would take several hours. I arrived just as the sun washed the color out of the horizon; the forest of pine trees dotting the hill behind the hospital lost its form and would soon be swallowed by the dark.
By contrast, when I entered the brightly lit neonatal intensive care unit, known as the NICU, a change of shift was underway. Nurses grouped in twosomes chatted noisily by babies' bedsides, while the resident doctor stood watch over all twenty babies lined up in bassinets and isolettes around the perimeter of the large room.
Dr. Runyon greeted me: "The bilirubin level on that kid with Rh incompatibility is now high enough that he's going to need an exchange transfusion."
When Charlie Nash was born, my medical team diagnosed Rh incompatibility. His mother had O-negative blood, and Charlie had O-positive blood. When Charlie's O-positive red blood cells seeped into his mother's bloodstream, her O-negative cells reacted to his positive cells as foreign invaders. She produced antibodies that crossed the placenta, and then attacked and destroyed his blood cells, causing anemia. As dangerous as anemia can be, the breakdown product of the ruptured red blood cells (bilirubin) has the potential to cause even greater harm. Bilirubin, which gives the skin its characteristic orange color, can cross the blood-brain barrier and cause permanent brain damage-if the level rises high enough.
From the details Dr. Runyon told me, I agreed that it was time to perform an exchange transfusion on Charlie to prevent his bilirubin from reaching a level that might injure his brain. During an exchange transfusion, we would slowly remove an amount of blood equal to twice his blood volume, and replace it using blood with a normal bilirubin level. I made sure Dr. Runyon specifically ordered a whole unit of blood (500 ml.) for the procedure, and of a blood type that would not adversely react with his mother's antibodies.
The disease caused by Rh incompatibility is rarely seen anymore in this country, thanks to the advent of the RhoGAM® shots given to women with O-negative blood type in the twenty-eighth week of pregnancy. RhoGAM prevents the mother's body from forming antibodies, which can threaten babies she might carry in the future. In the United States, each year, only a few women and their babies develop the full-blown syndrome, but Charlotte and Charlie Nash were among those unfortunate few.
"This will be my first exchange transfusion," the resident said when I reached her. "I can't wait."
And this will be my first exchange transfusion to supervise, without someone supervising me, I thought.
One of the stranger conundrums about practicing medicine is how excited some doctors become when they take care of very sick patients, or perform invasive procedures. The more technically challenging and the riskier the procedure or operation, the greater the thrill of achievement. Although both Dr. Runyon and I were looking forward to adding to our skill set with this procedure, I was thinking I would rather it could take place any time other than this Saturday night. It would be so much more fun to be home preparing Easter baskets with my daughters.
It was 1989, and I had recently completed the ten years of training (medical school, residency in pediatrics, and fellowship in neonatology) required to become completely and solely responsible for the patients under my care. As a junior faculty member in the Department of Pediatrics at one of the local medical schools, I supervised Dr. Runyon and many other resident physicians at the county hospital's NICU. The residents came here on a training rotation from their base at the university hospital. The resident doctors-recruits fresh from medical school-provided the daily "hands-on" care for all babies, stayed to tend them at night, and ran to emergency deliveries-if they were needed. While they were adjusting to their increased responsibilities since graduating from medical school, I was still trying to become comfortable in my new role as the final decision-maker for every baby's care.
I then turned my attention fully to the baby before me. "Before we begin, let's review all the baby's labs," I suggested to Dr. Runyon. "Make sure this is really necessary. What is his bilirubin now?"
"Eighteen. When the baby was born twenty-four hours ago, it was six."
"Aieee," I exclaimed. It had jumped far too high, far too fast. I noticed that the build-up of bilirubin in Charlie's body had indeed turned his skin orange.
We sat down at a desk with a computer and pulled up the baby's labs on the screen in front of us. Together we scanned them: hematocrit 26 percent, reticulocyte count 18 percent, and the number for sodium was 142, potassium was 4.1, and on and on. In less than five minutes, we had reduced the baby's plight to a series of numbers from which we would develop a complex mathematical equation. Within hours, the bilirubin was certain to exceed twenty-the level at which we had to be concerned about possible brain damage occurring-and it would rise further if we did nothing.
"The blood just arrived from the blood bank," announced Marti, the charge nurse. "We'll get it set up while you guys get consent."
Dr. Runyon led me to Charlotte Nash's room. She was resting in bed while her husband, Jim, sat next to her in a plastic chair. Half-eaten hamburgers, wilting French fries, and nearly empty shakes from the ever-popular Southern California institution, In-N-Out Burger, were strewn on the table that stretched across her bed. A pile of thick books with a yellow legal pad balanced on top leaned precariously from the seat of a chair next to Jim.
This couple did not fit the profile for county patients. While most of our patients were from other countries-Mexico, Guatemala, El Salvador, Columbia, Russia, Ethiopia-this couple were clearly from Main Street, U.S.A.
"Are you all celebrating?" I asked. "Congratulations on Charlie's birth."
"Thanks," they replied in concert.
"What's with all the books?" I asked. "That's a scary stack."
"I just finished law school in December, and I'm studying for the Bar exam. I'm not working right now, so my wife had to get Medicaid to cover her prenatal care. That's why we're here at the county hospital," Jim explained.
"Well, good luck with your exams. I don't envy you. I've taken enough of those killer exams to never want to go through that again." I could define my life over the previous ten years by measuring the intervals between major qualifying exams in medicine.
"Dr. Runyon and I came to get your consent for a procedure called 'an exchange transfusion,'" I continued. "It's unusual that your baby has such significant jaundice. Didn't you get RhoGAM with your previous pregnancies?"
"I was in a fender-bender during my last pregnancy," Charlotte said. "I didn't think I'd been hurt, so I didn't go to the doctor. My doctor later found I'd produced antibodies to Rh-positive blood, meaning that I had had some internal bleeding from my placenta at the time of the accident. He told me if I'd come in and gotten RhoGAM within seventy-two hours of the accident, this might not have happened."
"Oh, that's too bad. And once your body produces those antibodies, it remembers, and the next time you're pregnant, you produce even more." I finished the story for her. "That is why we are here now.
"So, in an exchange transfusion," I continued, "we take your baby's blood out, and put new blood back into him. This does several things: it takes out his blood cells that are marked as 'different' from yours, so they won't break down; it removes your dangerous antibodies from his bloodstream; it gives him new blood cells that will not be broken up; and it cleans the bilirubin out of his blood."
"Whew," said Jim. "That is a lot."
"Yes, it is complicated. But without doing the procedure, his bilirubin level will go higher, and he could develop brain damage."
I did not tell them about the time I had seen a baby with this same condition in Nicaragua. In the small town I visited on a medical mission, blood was not available for transfusion. The doctors had no treatment to offer, other than standard phototherapy, which we were now using with Charlie. The baby demonstrated all the signs of impending brain injury, including arching his back so far behind him while stiffening his arms that he looked like a circus contortionist.
In the village's clinic later that same week, I examined another child, a six-year-old with signs she had suffered through this same complication as a newborn. Brought in by wheelchair, her arms writhed uncontrollably while she drooled into a bib tied around her neck. In the developed world, this is a preventable complication.
"What are the risks?" Charlotte asked.
"There's a 1 percent risk of death. Some of the blood chemistries get out of whack, but usually, things go well."
I could not help thinking about the time I had had to sign a consent form to have a medical procedure done under general anesthesia. When the surgeon told me there was a chance I could die as a result of the anesthesia or as a complication of the procedure, I balked at signing. "I'm not going to give you permission to kill me," I said.
"Look, it is just a standard consent form," he said. "I have to tell you the risks."
Knowing I needed the operation, I had no choice but to sign. That was the position in which I had just placed Charlie's parents. As a physician, I knew that his parents should expect to hear my opinion on why the procedure was necessary, what the risks and benefits of the procedure were, and what alternatives there were to performing the procedure. I also knew that the risks, however frightening, should never be glossed over or minimized, in the event that they actually might occur.
"Can we see him before you start the transfusion?" Jim asked, after Charlotte watched him scrawl his signature on the consent form.
"Sure. It will take a couple of hours once we get started, so come now."
Dr. Runyon and I returned to the NICU with the consent form and got everything ready while the parents shared a brief visit with their baby. "I love you. I love you. I love you," said Jim, grasping his son's tiny fingers. "Do you think he'll still be able to get into Yale Law School?" he asked me while I donned my sterile garb. "I've got high hopes for this boy."
As I tied my surgical mask across my face, I said, "I don't see why not."
Dr. Runyon tucked her ponytail under her gauzy blue paper hat, and we were ready to start, both of us wearing floor-length blue-paper gowns and sterile gloves. We had created our own "mini-operating room without walls" right in the middle of the NICU.
The procedure started slowly and then picked up speed. First, Dr. Runyon used a large syringe to draw blood out of one of Charlie's umbilical IV lines and then expel it into a "waste" bag that hung at the bedside. Simultaneously, I pushed red cells supplied by the blood bank into the baby's bloodstream through the other umbilical line. With both of us working on the baby, we could cut the time it usually takes-often several hours-in half.
Stevie Wonder's voice soared over the NICU as we worked, and since it was quiet, I could actually hear the words of "I Just Called to Say I Love You" across the din of the room:
"Ya hear that, Charlie?" I asked. "I heard your daddy tell you he loves you, and now Stevie Wonder is singing to the whole world about it."
"Man, it's so hot under this gown," I complained about forty minutes into the procedure.
Just then Marti said, "Dr. Hall, the monitor looks weird."
I glanced up, and sure enough, the little up-down-up line that regularly marked each heartbeat in red, like a visual metronome, had transformed into an unruly squiggle.
"What's going on?" I asked. Fear seized me. My breathing quickened. I flushed and felt hotter still under all my paper garments. "Let's stop for a minute," I said.
"Looks like V-fib," said Dr. Runyon.
I did not want to agree with her, but I had to. "Sure does," I muttered.
Ventricular fibrillation-V-fib for short-occurs when the heart stops beating and starts to tremble chaotically. Instead of contracting forcefully to propel the blood out of the heart, no blood is ejected. V-fib is a life-threatening emergency: a quivering heart cannot supply blood to the brain, and an oxygen-deprived brain can ruin an otherwise promising life in five minutes.
"Draw a blood gas," I instructed.
Dr. Runyon pulled back on the syringe and red blood flowed easily into it. A respiratory therapist appeared at her side to pick up the sample.
The therapist was gone before I even finished saying "Stat!"
Moments later, he reappeared with the results. "The pH is low enough to qualify as a panic value," he said.
What had happened? Since I had reviewed the baby's blood tests before we started, I knew the acid-base balance in his body was now significantly abnormal; his current blood pH of 6.9 showed a frightening difference from the normal value of 7.4. My thoughts did not want to go forward; my brain froze. I willed myself to think logically.
Aha, I thought after a moment . The heart is protesting because it is being bathed in acidic blood, instead of blood with the usual normal pH of 7.4. I knew stored blood was acidic, but I had never seen it cause a problem like this before. What had I done differently to cause this?
" Let's send a sample from the blood we're infusing. Run it quick," I begged. I handed the specimen to the therapist, who dashed off to the lab once again. "Draw up six milliequivalents of sodium bicarbonate, Marti. Please," I added as an afterthought.
I fixed my eyes on the baby's monitor screen. The squiggle taunted me. My breath still felt frozen inside of me, but I had to shake it loose so I could inhale. I would need all my breath to outrun the freight train I felt barreling up behind me. Get the baby off the track, I thought.
"Can you feel a pulse?" I asked Dr. Runyon.
She slipped her index finger down under the green cloth drapes where we had hidden Charlie when we created our sterile field. Placing her finger on his neck, she felt for the soft flicker over his carotid artery.
"I'm not sure," she said, her face a jumble of emotions: fear, confusion, uncertainty-the same emotions I was feeling. Then she added, "It's there, just weak and irregular."
I glanced from the monitor to Charlie-what I could see of him. He was still pink and breathing easily, and his eyes peered out above the green towels that covered his body from belly to chin. Not too bad… yet, I thought.
Marti handed the syringe containing sodium bicarbonate to Dr. Runyon, who infused it promptly. The therapist returned with the tiny slip of paper containing results of the most recent test. "The blood sent up from the blood bank has a pH of 6.5."
I felt my stomach climb into my mouth.
Blood stored in the blood bank for a number of days degrades to an acidic state. This rarely presents a problem, since most transfusions are small in proportion to a person's blood volume. The bit of acid-tinged blood is quickly diluted in the recipient's bloodstream. Even in an exchange transfusion such as we were doing, it is not recommended to check or adjust the pH of the blood being infused. I could only surmise we had done the exchange-taking out large volumes of Charlie's blood with its normal pH and replacing it with blood with an acid pH- too fast, faster than Charlie's body was able to adjust. Charlie's heart was in full rebellion. We had upset its precise electrochemical balance.
Dr. Runyon and I stood like matching statues over Charlie's body. "What else can we do?" she asked.
Call the attending, I thought. Oh, that's me now. This is my emergency to handle on my own. I've got the diplomas and certificates to prove it.
"Yeah, what are you going to do?" asked Marti, the nurse helping us. "Jeez, you've got to do something." Marti's voice was several decibels higher than her usual already-loud register.
"Marti, we are doing something. We're giving bicarb. But, get the Code Pink cart close by, just in case we need more meds," I replied. "And be ready to start CPR at any moment." I could not let Marti's anxieties exacerbate my own. My challenge was to remain calm, so I could think clearly. Clear thinking while working under pressure is an important skill for every doctor to master, but especially for those working in high-stress areas of the hospital, such as in intensive care units, operating rooms, and emergency departments.
Marti bustled behind us, pulled the cart into position, and opened several drawers to remove syringes and needles, boxes with small vials of medication, and equipment to intubate the baby should his breathing cease. Her movements were frantic, loud, jarring. They reflected the anxiety I felt, but tried hard not to show.
"Standard treatment for V-fib is to shock the baby," I told Dr. Runyon. "But it's not likely to work if we don't correct the acidosis first." Giving the baby a jolt of electrical current from large paddles applied to his chest would give his heart a chance to 'reset' and resume its normal rhythm. I did not want to do it unless it had a better chance of working. "Let's give more bicarb."
A crowd of nurses gathered around Charlie's bedside, all eyes trained on his monitor. They looked as if they were watching a slow-motion replay of a car crash to understand exactly how one car had careened into another. I noticed two others who sat feeding babies on their laps on the opposite side of the room; my guess was that they did not want to be anywhere near the fear on Charlie's side.
Soon the bicarb was in, followed by a bolus of normal saline, a dose of calcium, and a shot of glucose. Occasionally, the crowd cheered when a normal-appearing beat moved randomly across the monitor screen. But just as quickly, their elation turned back to terror when the beat disappeared.
"Hey, come on, Charlie," I pleaded. "We're trying to help you." Since he was still alert, I thought he must be getting enough blood to his brain in spite of the irregular heart rhythm.
"Shall I call cardiology?" Dr. Runyon asked. Sweat beaded her forehead just below her blue-paper hat.
"Be my guest." Why hadn't I thought of that? During my short tenure at the county hospital, I had already learned that practicing medicine there was a bit like practicing in a third- world country. Many of our patients were from the third world, resources were generally scarce, and we had no highfalutin consultants like they did at the university hospital. We were out in the boonies by ourselves, improvising with what we had. One of the things we did have was a telephone.
It took a few long minutes for the page operator to locate the cardiologist on call. Finally, Dr. Runyon spoke to him. "He recommends lidocaine," she yelled across the room to me.
"Lidocaine? I haven't given that in forever. I have no idea what the dose is." Why can't a cardiologist just be here with us? I thought. I could use the moral support.
"What's the dose?" she asked into the phone.
Once she had her instructions, Dr. Runyon whipped out a calculator and figured the concentration and drip rate of the medication. "Will someone run this down to pharmacy?" she asked after scratching her results on an order sheet. "We need it stat."
"Yeah, right," said the respiratory therapist. He was the only one in the room who acted as if nothing were happening. He continued to make his rounds, examining the other babies and checking their ventilator settings and oxygen-saturation probes, while a nurse picked up the order and slipped out of the NICU to take it to the pharmacy.
My eyes flitted back and forth between Charlie and his monitor. He remained pink with his orange undertones. If he did not get enough oxygen, what color would he be? Blue plus orange equals what?
"At what point do we start CPR, Dr. Hall?" Marti asked.
My stomach flipped over. The minutes ticked by; I had no idea how many had passed.
"If he loses consciousness or stops breathing, or his color goes bad, we'll start CPR." Will that be too late? Won't those be signs he's already slipped over to the other side? Since he didn't seem worse, I was optimistic his blood pH was improving and we were nearing our mark.
In the background, the radio blared. The night shift always turned the volume up loudly, or maybe it just seemed loud because a hush had fallen over the NICU. Emergencies could either be tumultuous and chaotic as we struggled to bring a baby back to life, or they could be deathly silent as we pondered what intervention to try next.
"Dr. Hall, don't you think you ought to talk with the baby's parents?" Marti interrupted my thoughts.
"Good idea. Yes, can someone go get them?" I dreaded this conversation, but I knew it was better to give them a warning than to walk in unexpectedly, some minutes later, to announce their son had departed this Earth.
"Will do," she agreed.
Seconds passed before Charlotte and Jim stood at the door of the NICU. I pulled away from Charlie's bedside, took off my mask, hat, and gown, wadded them up, and threw them in the trash. I was not going to continue the exchange transfusion tonight, no matter what happened.
"I'm having trouble with Charlie," I told them. "His heart isn't beating regularly. It's just sort of quivering. His acid-base balance was upset by the transfusion, and we're trying to fix it."
Looking as if he had been punched in the gut, Jim sucked in a slow, deep breath.
"It's not like he could die or anything, is it?" Charlotte asked.
"I sure hope not. I'm working as hard as I can to get his heartbeat back on track. Please don't abandon hope, but I should get back to him now."
"Let's go back to the room, honey," Jim said, wrapping his arm around his wife. Looking back at me, he added, "Call us when we can see our baby."
I wished I had the luxury to spend more time talking with Charlie's parents about his tenuous condition, but I was grateful to be left alone to focus on helping him survive this emergency. How could I have taken a baby who was in perfect health-except for his blood group incompatibility-and brought him to the brink of death? Although I had not given the baby the condition that required the exchange transfusion, I had likely performed the transfusion too quickly, thereby jeopardizing his life. I thought about the statistics I quoted to Charlie's parents. "A 1 percent risk of death," I'd said. Had I even believed that was possible? One is a pretty big number when it is you or your baby experiencing the complication, especially when the complication is death.
When I returned to Charlie's bedside, Marti was hanging a small, clear plastic bag containing the lidocaine. As it dripped through the baby's IV, I held my breath. Faster, faster, I thought. Please, please, please, I prayed, let this work.
"One more blood gas," I said. "Let's see if we're making progress."
Shortly, the results returned. "Doin' better," exclaimed the respiratory therapist, a surprised smile on his face. "Doin' better."
Normal blips punctuated the monitor screen more frequently now. Then, almost as mysteriously as the squiggle appeared, it faded and was replaced by the usual reassuring pattern.
"Yay!" cried Marti.
"Hey, we don't call it 'intensive care' for nothing," I said. Thank God the medications worked, I thought.
"Whew," exclaimed Dr. Runyon. "That was a close one. I thought I liked intensive care, but after tonight, I'm not so sure."
"Well, we've learned a lot tonight, haven't we?" I said. "If we need to repeat an exchange transfusion tomorrow, since we didn't even get halfway through this one, we'll do it more s-l-o-w-l-y and add some bicarbonate to the blood before transfusing it." You can't be too careful, I thought, if you intend to meet that highest standard of practicing medicine, Do No Harm.
We took the sterile drapes off Charlie, checked his lab values, and continued his phototherapy. I went to his mother's room, where Charlotte and Jim greeted me with tense faces. "He's okay. Things are back to normal," I said. "Thank God."
I was ready to leave the NICU for home, but first I stopped to talk with several of the nurses. "What do you think happened?" one of them asked. I knew I should help them understand what had transpired in case they needed the knowledge in the future.
"Just don't be in a rush during exchange transfusions, like I was," I said. "Time is of the essence, but not in the way you usually think it is. Slower is safer." After explaining my thoughts, I headed for the door.
"Keep everyone safe, Dr. Runyon," I said as I walked out. "And Happy Easter to all." I was glad Charlie would get to see Easter as well, and I was still amazed and mystified by how he seemed to pull through in good shape.
I had left my career as a social worker to enter medicine both so I could find out how children with developmental disabilities I had previously worked with had "gotten that way," and to be in a position to do something concrete to help them get better. I hoped I had not just created another disabled child in Charlie Nash.
Several days later, after another exchange transfusion successfully cleared Charlie's jaundice, we did a CAT scan of his brain, to make sure he had not suffered any ill effects from the long time his heart beat was irregular. The radiologist read it as normal.
"He's still got that chance at Yale," I told his Dad. "Go for it!"
Rh isoimmunization, the condition for which Charlie was being treated, rarely leads to the need for exchange transfusion in the United States anymore, due to the advent of the Rh Immunoglobulin shot (RhoGAM®), which prevents mothers from developing antibodies to the Rh factor. An excellent patient-education pamphlet explaining the Rh factor, and how sensitization occurs during pregnancy in women who have Rh-negative blood type, is on the website of the American Congress of Obstetricians and Gynecologists: (http://www.acog.org/ publications/patient_ education/bp027.cfm).
The incidence of kernicterus and long-term brain damage resulting from hyperbilirubinemia of any cause diminished markedly during the 1980s when conservative guidelines were in place detailing when doctors should perform exchange transfusions. These guidelines were relaxed somewhat in the 1990s, primarily for babies whose jaundice was the result of breastfeeding, usually occurring after discharge from the hospital. Coincident with relaxation of standards for exchange transfusion, "early discharge" from the hospital after birth became the norm, with "drive-through" deliveries occurring and babies allowed to go home with mothers after periods as short as six-to-twelve hours after birth. Subsequently, researchers documented a resurgence in cases of kernicterus. (American Academy of Pediatrics Subcommittee on Hyperbilirubinemia. 2004. "Management of Hyperbilirubinemia in the Newborn Infant 35 or More Weeks of Gestation." Pediatrics 114(1): 297-316.)
Prevention of kernicterus is now a patient-safety goal mandated by The Joint Commission (http://www. jointcommission.org), the organization that accredits hospitals and other health care facilities. Recommendations for how doctors should evaluate and follow-up each baby's risk for jaundice within the first few days after birth are in The Joint Commission's Sentinel Event Alert, August 31, 2004. (http://www.jointcommission.org/sentinel_event_alert_issue_31_revised_ guidance_to_help_prevent_kernicterus/.)
Physicians in all fifty states have both an ethical obligation and a legal requirement to obtain informed consent before performing any invasive procedure on a patient. The goal is to enable patients (or their parents, in Charlie's case) to make educated decisions after learning about all the different treatment options. The process of obtaining informed consent is much more than simply asking a patient or his or her proxy to sign a piece of paper. It involves communication between doctor and patient or in the case of babies, their parents, about the patient's condition, why a particular procedure is being recommended, what the risks and benefits of the procedure are, as well as alternatives to the proposed procedure including the risks and benefits of the alternatives.
The patient or his or her representative-including parents-should also be told the risks and benefits of not having the procedure done. It is the physician's obligation to have these discussions using terms that laypeople can understand, and to allow adequate opportunity for patients or their representatives to have all their questions answered. See the website of the American Medical Association to read more about this process: (http://www.ama-assn.org/ama /pub/ physician-resources/legal-topics/patient-physician-relationship-topics/informed-consent.shtml).