Authors: Robert Marion
Saturday, April 19, 1986, 11:30
P.M
.
Last night one of my patients coded and died. It really hurts to go through the story again, but I suppose I'll try.
It was a little five-month-old with bad heart disease, doesn't matter what type, who had been admitted several times before for congestive heart failure. This time she was coming in to get a cardiac cath done so they could plan her surgery. When I first saw her, she was in some failure: She was puffing away and a little cyanotic
[blue]
, but her mother said she always looked that way. And so I got her plugged in and talked to her attending and he also told me not to worry because this really was her baseline, so it wasn't necessary to start oxygen. The cath was scheduled for the next morning. In the evening, she spiked a temp; there was no obvious source, and it was only a low-grade fever. I figured maybe it was the start of a URI
[upper respiratory infection; cold]
. The resident who was covering looked at the kid and said she had an otitis
[otitis media, an ear infection]
. She didn't have an otitis, no more than I did. But the resident insisted, so we gave her some amoxicillin and some Tylenol and she defervesced. But she had spiked and it was the day before her cath.
She went for her cath bright and early yesterday morning and she came back at about ten. We were on attending rounds. I saw her for a moment, at about noon. She had fallen asleep in her mother's arms, and her mom asked me not to disturb her. I told her I'd come back and see her later, after she'd slept for a while. When I came back, she looked a little uncomfortable, but not bad. I got called away to do something else before I had a chance to finish my exam.
At two o'clock we were called to see her because the nurse had noticed she was looking worse. We went in: There she was, pale, tachypneic, with cold extremities. She looked clamped down and shocky. We had a devil of a time getting a line in. Before we did, we got a blood gas: It showed she was quite acidotic, with a pH of 7.21. But after we got the line in, we gave her a small amount of fluid and she seemed to become more comfortable. Her repeat blood gas was improved; she was less acidotic.
A little later we decided we should give her a little Lasix
[a diuretic]
so she wouldn't go into congestive failure or pulmonary edema. When I went to give it she looked comfortable, breathing at sixty instead of eighty. I spent the afternoon darting in and out of the room; basically she looked okay. We put her in 60 percent oxygen by headbox to help her out. Her attending also kept coming in and going out all afternoon. He was concerned that she had suffered some sort of ischemic event
[damage to the heart muscle due to lack of oxygen]
, but he didn't know when. He told me I might have caused it by drawing blood and introducing an air embolus, something I'd never heard of before. That sounded like a really ridiculous idea. He said it might have been that or it might have been the cath, but he sort of kept stressing that I had done something.
Anyway, at about five o'clock he was there, and he chastised Eric. He told him how foolish and unobservant he had been. He told him that the child was in respiratory distress, grunting and flaring, and that he'd noticed it an hour and a half before, but that he didn't seem concerned. During the afternoon, the baby had spiked to 40.5°C
[almost 105°F]
. We were very worried, so we got a chest X ray, drew some blood, and started the baby on antibiotics. Her attending told us the fever was just a “dehydration fever.” I saw him put his hand on Eric's shoulder and say condescendingly, “I've been in this business for a long time. I can tell you that's all it is.” He didn't want us to start the antibiotics. But we did nonetheless.
At about six-thirty I was writing my sign-out, trying to get home; Eric was with Kelly Jacobs, the other intern, almost at the end of evening rounds. Eric remarked to Kelly that the baby had a “preterminal look.” She had a heart rate of ninety, which is slow. Suddenly her heart stopped, right in front of their eyes, a witnessed cardiac arrest!
When I first heard the scream “Call a code!” I jumped up; I knew it was my baby. I ran into the room; they were starting to position her to start CPR. I turned around and helped the nurses haul the crash cart in. Eric intubated the baby and I took over managing the endotracheal tube while he ran the code. I started ventilating the baby while Kelly started sternal compressions. He was counting “One one-thousand, two one-thousand,” up to five, and I forced a breath in every time he got to five. Meanwhile, the nurses had ripped open the crash cart and people began to fill the room from everywhere. And we began to code the baby.
We did everything we could. We pushed four rounds of meds. Jon, the chief resident, came and stuck a line in the baby's external jugular vein. We poured in fluid and kept pushing meds. But every time we stopped the CPR and looked up at the monitor, there was nothing. Flat-line. Finally we put her on an Isuprel drip. Even that didn't work. Then Eric tried intracardiac epi. And when that didn't work, after twenty-five minutes, they called the code and declared her dead.
At one point, well into the code, I remember looking up and seeing the mother, horror-stricken, with her hands to her mouth, bent at her hip like she had been punched in the stomach, screaming with horror. And then Jon had pulled the curtain so she couldn't see in. When we stopped the code, Eric pushed me out of the room and told me to tell the parents. He said, “You go first, go tell them.” Just for a moment I stood in the baby's room terrified that I'd have to go through this experience again; I've already had to tell three sets of parents that their child had died. But this would have been the worst of them, because this was my patient, I had admitted her, and because this was a baby who wasn't supposed to die.
But I was spared giving the news this time. By the time we left the room, the mother already knew. Word got out very fast; one of the nurses had told the baby's grandmother, and the grandmother had told the mother.
We went out of the room as the nurses came in to clean up the mess. As we passed through the hall, there were shocked, terror-stricken looks on all the other parents' faces. Then we saw the mother. She was panicky and crazed. She wanted to run in and see the baby. We had to hold her back; we kept telling her that she shouldn't go yet, that she should wait until everything had been cleaned up. She was screaming that she had to see the baby and we couldn't keep her from her baby! But we told her again that she shouldn't see her baby now, with all the needles and the mess.
Someone found a wheelchair and we got her into it; with a lot of effort, we pushed her into the house staff lounge. We got the father in and we got everyone else to leave, and we told the parents exactly what had happened. That's when they began to cry. We told them we had done everything, everything possible, and that nothing had worked; there was never a response. They just couldn't understand.
Then finally one of the medical students came in and said it was okay for them to come and see the baby. The mother darted out of the room and we followed behind her. We stood in the hallway and we called for the attending and we called for the priest and we called for the social worker. There were a lot of crying, hysterical relatives filling the hallway, filling the ward, and panic-stricken parents of the other children stood uncomfortably at the edge of the doorways, not knowing what to say or how to act. It seemed to go on forever.
The father didn't stay in the room long; he couldn't bring himself to look at the baby. The mother stayed. When she finally came out, we took her, and the father, back to the house-staff lounge and we sat and talked for a long time.
After a while I left the room. I had to try to finish my work so I could go home. It was hard to concentrate on my other patients, but somehow I did it. At some point, Jon came in and asked me if I would go back and sit with the parents while he and Eric went to attend to some other business. I went in. It was just the parents and me. They sat there, upset but now calm. They asked me, “What will happen to our baby now? Where will you put her?” I told them the baby would stay in the hospital until they had decided what they wanted to do. They asked me if I thought an autopsy should be done, and I said yes, I thought one should, so that we could find out exactly what had happened. But they shook their heads no.
A little later, Jon and Eric came back with the autopsy permission form. They urged the parents to consent to an autopsy; the parents said they would think it over.
Before I left for the day, I pulled Jon aside and began to cry. I couldn't stop; I cried for the baby and for all the other children I'd seen die. I told him that I'd had other patients who had died and that I was beginning to feel like a death cloud. We went and talked and he reassured me it wasn't my fault.
Then the family met with the priest and the social worker. Phone numbers were exchanged; I didn't give them mine, but I thought that someone else had given them my number. Now I worry that I've lost touch with the parents forever. I wish I could be available to them.
When the family left, Jon, Eric and I were standing in the house-staff lounge. Eric cursed about how terrible this all was and then, in a very serious and angry tone, he said, “This job sucks!” We sat there silently, morose and upset. But then Eric began to imitate and make fun of some of the attendings in the most merciless way. And pretty soon, we were all laughing, and it felt so good to laugh because it had seemed like forever since I'd last done it. But as I was sitting there laughing, this terrible sadness came over me; I started feeling guilty for laughing at such a serious time. Then I began to sense a horrible, black feeling coming over me.
I left after that. The baby's attending had never shown up. I was exhausted, so exhausted. It was a very bad night, a night during which I thought about quitting. And so I got up, and walked home.
I tried to call someone, just to talk about what had happened. All I kept getting was answering machines. So I tried to get drunk, but I could barely finish two beers because I was so tired. It's been over twenty-four hours since it happened, but all day today I've been feeling depressed and upset. And I feel guilty as hell about it, even though I've been told over and over again that it wasn't my fault.
Mike Miller had me over to his house. He told me over and over that the baby's death was not my fault. We talked for hours. I really think Mike cares. He told me that the whole thing had happened under the eyes of the attending and that I was not to feel responsible for the baby's death. And yet I do feel responsible. I feel terribly guilty and terribly sad. And I need to find some place for this inside of me so that it won't eat me up, so that I can live with it. This was definitely the worst death of all deaths this year.
Monday, March 31, 1986
I'm in the neonatal ICU at Jonas Bronck now. Most of my patients shouldn't even be alive. They're so small and sick, I can't understand how any of these things are going to grow up to be anything like a normal child. Most of them don't even seem human. It's such a contrast for me. I spend the days running around doing all this worthless work on these premature babies and then I go home and see Sarah. Sarah's a real person now, she's walking around and talking. It's great to watch her and to be part of the process, but then I go back to work the next morning and I realize that no matter what we do or how hard we work, it'll never be possible for most of my patients to do any of the things my baby can do. I feel very sorry for them but I also feel sorry for myself, because I'm being forced to take care of them and I don't want to have to take care of them. I stand back sometimes and realize that we're not really doing anybody any good. But that's not for me to say. I'm supposed to do what the attending tells me.
And things are even worse this month because I'm feeling so bad. I'm nauseous all the time now and I'm always completely exhausted. I get to a point around three o'clock every afternoon where I have to lie down for a few minutes. Trying to get a half hour or so off in the middle of the afternoon in the NICU is not the easiest thing to do when all your patients are in critical condition and dying and there's still a ton of scut that has to get done. So far this pregnancy is a lot worse than my pregnancy with Sarah. I'm feeling a lot sicker. It's probably because I started out this one so chronically exhausted.
I still haven't told anyone in the program except Bob Marion that I'm pregnant, so I have to cover up how I'm feeling and make excuses about why I need to go off and be by myself for a while. I don't think anyone's caught on yet, but I'm sure it's only a matter of time.
I've got a total of eight patients. Four of them started out weighing less than eight hundred grams
[one pound, twelve ounces]
. Two of these are relatively new preemies and are extremely sick. Both are on ventilators; one has NEC
[necrotizing enterocolitis, a serious infection of the intestine]
and sepsis and all sorts of other problems. I spend most of my time trying to keep these two from dying. My other two preemies have been around longer; one's about a month and a half old and the other's nearly four months old. I remember the four-month-old from the last time I worked in the unit; he was very sick back then. Now he and my one-and-a-half-month-old are stable but they're both really damaged. They both have grade IV IVH
[intraventricular hemorrhage, a hemorrhage into the ventrical of the brain; IVH is graded from I to IV, with IV being the most severe]
, and one has bad hydrocephalus. The four-month-old has been abandoned by his mother. The mother hasn't been around in over a month. I don't know if I can say I blame her. I'm not really sure what I would do if I were in a situation like that. God forbid! But the nurses are really attached to this kid. That seems to be something that happens a lot when babies spend so many months in the unit.
I've got another patient, a six-month-old, who was born with congenital hydrocephalus. He's been in the nursery his whole life! His head is enormous; it looks like a basketball. He's had five shunts placed, but none of them seems to have done any good. All he can do is suck, breathe, and keep his heart beating, so he won't die for a long time, but he also isn't going to be leaving this unit. It's really sad. His mother visits him every day. She's kind of a pain; she always asks about his head circumference and tries to find out what his last CT scan showed. I feel sorry for her. She's really devoted to him. I don't think she has much of a life outside of here.
Then I've got this whole assortment of crack babies who live in the ICU. We had some in the well-baby nursery when I was working out there but they were mostly just social problems. These babies in the unit are all very sick. They all started out addicted and SGA
[small for gestational age];
a couple of them have had convulsions. And all of them have either been abandoned or have been taken away from their mothers by the BCW. They're all very pathetic. They start out sick, and even when they get well, they have no place to go.
So that's my service so far. I don't understand how I'm going to have enough motivation to get up every morning and go to work. I'd rather just stay home and lie in bed all day than go to that horrible ICU.
Saturday, April 5, 1986
One of my patients died last night. Dying was definitely the best thing that could have happened to this baby; he had almost no chance of survival. But dealing with the mother was very hard.
It was a baby who had been born two days ago with severe malformations. At first we weren't sure what the baby had, but we knew it was something really bad. She was very abnormal-looking; she had a loud heart murmur; and she didn't respond to anything, including pain. Bob Marion came to see her and said the baby had trisomy 13.
[This is a disorder caused by an extra copy of chromosome thirteen. Children with trisomy 13 have so many malformations, both internally and externally, that almost all die within the first few months of life.]
He told us we shouldn't do anything heroic to try to prolong life, so we didn't, we just let the baby be and kept her comfortable. It took her over twenty-four hours to die; she waited until everybody else had gone home, so it was only me and a senior resident who was cross-covering.
The baby's heart just stopped beating. One of the nurses called me over and told me she was dead. I listened and didn't hear any heart sounds. At least she chose a reasonable time to die; it was about eight-thirty. At least the nurses didn't have to wake me up at four in the morning to declare her.
The mother was out on the postpartum ward and I went out to her room to tell her. She was really upset. Bob Marion and Ed Norris, our attending, had talked to her a few times since the baby had been born, so she knew what was wrong and that it was only a matter of time, but still she got very upset when I told her. It was really sad. She's thirty-nine years old and this was her first pregnancy. I sat with her for about a half hour, trying to calm her down. She told me she really wanted this baby, that she had had a lot of trouble getting pregnant and had gotten to the point where she didn't think she'd ever be able to conceive. And then, just when she had just about given up hope, she became pregnant with this baby, who turned out to have trisomy 13. I had absolutely no idea what to say to her. What can you say at a time like that? I don't even want to think about it, especially not now. So that wasn't the easiest thing in the world to deal with.
The rest of the night wasn't bad, though. I even got a few hours of sleep. Most of the preemies behaved themselves and didn't do anything stupid while I was on. Still, all night, I kept thinking about that mother. And so even though it should have been an easy night, it wasn't.
Friday, April 11, 1986
Yesterday was the official opening of the neonatal intensive-care unit on 7 South. The unit's actually been open for months now, but that's beside the point. They had this big celebration, and Mayor Koch, a group of other officials from the city, and all these reporters were here. Ed, our attending, who's the director of the nursery, took the mayor on a tour and showed him some of the six-hundred-grammers. The mayor was, to say the least, a little put off by the appearance of some of our patients. He didn't volunteer to kiss any of them, the way most politicians kiss babies.
I was on last night, and I had a terrible night. At about 1:00
A.M
., we got a call from the DR that they had this woman who had just walked in off the street who was ready to deliver and had had no prenatal care. They weren't even sure when her LMP
[last menstrual period]
was, but they thought the baby might be about twenty-six weeks. Luckily, I was on with Enid Bolger, who's the senior in the unit this month. Enid also happens to be very good. We went running down to the delivery room just as the baby was coming out. It was tiny! I was positive it was too small to survive. Enid thought so, too, so we just gave it some oxygen and didn't do much else. It was only about eleven and a half inches long, so it was probably about twenty-three weeks
[about three weeks too early for the baby to live independently outside the uterus]
. But the baby came out with a heart rate, so we had to take it back to the ICU and wait for it to die.
That was pretty bad, but it could have been worse. Enid was very good about it; she didn't go crazy, like some of the other residents do. Some people would have done everything: intubated it, put it on a respirator, started IVs. But it wouldn't have accomplished anything. That baby never had a chance. It weighed only 520 grams
[about one pound, two ounces]
. So it was good to have someone like Enid in charge; I agreed with her completely in how this baby was managed. When the heart finally stopped beating, Enid and I went down and talked to the mother. She didn't seem too upset. I don't think she had really thought of it as a baby yet. I'm not even sure if she had realized she was pregnant before that day. She has three children at home. I don't know, I'm fairly sure it was for the best.
But I didn't get much sleep, and I've now had two deaths in one week. That's a lot, even if you're expecting the baby to die. I hope my luck changes.
I got into a fight with a mother last night. It was the mother of my patient Moreno, the six-month-old with hydrocephalus. I was in the middle of doing my evening scut and one of the nurses told me that Mrs. Moreno wanted to talk to me. I told the nurse I was busy just then and I'd try to stop by later. It was a very busy night and I completely forgot to go back to find the mother, and about an hour and a half later the woman came up to me and said, “Didn't the nurse tell you I wanted to talk to you?” I very nicely explained to her that I had a lot of work to do and I couldn't talk just then. She then got nasty, accused me of neglecting her child because I didn't think he was as important as the other babies, and said she was going to go right down to the patient advocate's office to make a formal complaint against me. I felt so lousy and I was so fed up with everything that I just told her, “Go ahead! Go and complain! What can they do, fire me? Let them fire me! I'd be glad if they fired me!” And I went on like that for a while. The woman didn't say another word, she just walked off the unit. I guess she went and complained. I haven't heard anything about it, but I'm sure I will. The nurses told me not to worry, though, because since the baby's been in the unit, she's complained about four other doctors. Still, I don't think I should have been so nasty to her. But what can I do?
Thursday, April 17, 1986
I don't think I want to work in that unit anymore. Too many bad things have happened in that nursery. I don't like taking care of those things. I just want to stay home with Sarah.
I had another death last night. That makes three on my time in three weeks. This last one was the worst of all of them because it was my four-month-old preemie, the one the nurses were really attached to. He had been doing poorly all along, and last night at about two o'clock, one of the nurses went in to check him and found him dead. Just like that. He was cold already. There wasn't anything we could do for him at that point. The nurses were really upset about it; some of them cried. I've never seen a nurse cry before for a patient who had died. At least I didn't have to go through the stress of talking to the mother, but spending the rest of the night with the nurses who were in a rotten mood might have been even worse.
Mrs. Moreno did complain about me to the patient advocate. I got called down there on Monday, and one of the administrators asked me to explain what happened. I told him the whole story and he told me that this woman was very angry about what had happened and what was happening to her baby, and she was blaming the entire staff for everything. He said it was a bad situation but they were trying to keep her calm and that for the rest of my time in the ICU I should try to be nice to her and put up with all her craziness. He didn't fire me. I was hoping I was going to get fired or at least suspended for a week or two. No such luck.
There's only one more week to go, so it looks like I'm going to make it through the month. I go to the OPD next, and that should be easier. And I think I'm starting to feel a little better. I didn't feel like I had to vomit once all yesterday and today. So maybe this part of the pregnancy is coming to an end. I know that'll make things easier.