Doctors see tragedy all the time. Each one of us can tell a particularly tragic case, a sad story that stands out among all sad stories. This is my worse-case story.
When I was a resident at Children’s Hospital of New Orleans, I did a required month in the Pediatric Intensive Care Unit (PICU). The PICU month was brutal one by my program’s standards – call every third night, a unit full of children on ventilators, children recovering from heart surgery, even cancer patients on chemotherapy. Unlike some rotations, overnight call really did carry the potential for staying up all night. And then there was the death. Though thankfully patients did not die all that often, in pediatrics the death of a patient is personal to a degree rarely matched in adult medicine. A death in the PICU was worth ten on the adult wards.
It has always interested to me how much emotional mileage we get out of blaming the patient. It is not something I or any other heath care worker consciously does, but we do it. When an adult suffers and dies, unconsciously, almost reflexively, we think they deserve it, or at least we say to ourselves that the patient had the opportunity to live a good life and if he didn’t it was his own fault. Without the benefit of longevity, children leave us no room for such thinking. Children are innocent, and when a child suffers hideously and capriciously it seems so completely unfair. Not only deprived of life, the child is deprived of even the gift of a past, and for the pediatric doctor this means there are no past transgessions to blame the death on. Thus the pain is magnified.
In the second week of my PICU month I was called to the emergency room for a late night admission. It was an unusually busy night, and the floor residents were having trouble keeping up with admits. I was asked to help out. Going down to the ER, I found waiting for me a two week-old baby with a fever of 102. Newborn babies with fevers are always regarded with great concern in pediatrics. During the period of childbirth an infant can contract any one of several deadly infections, and without immediate medical attention, the mortality risk is very high.
Baby Amber was a perfect-looking neonate. Good weight, normal head circumference, no visible signs of dehydration. She looked a little pale, but sick children can be like that – looking awful one minute and playing and sucking at the bottle the next. So there was not necessarily a cause for alarm. I examined her, ordered antibiotics and started writing orders to send her to the floor. Hopefully the blood cultures would check out all right, and mother and child would go home in three days.
While I was writing up the orders, Amber had a seizure. This immediately raised the stakes — if a fever in a newborn is worrisome, a seizure combined with a fever is a harbinger of real danger. It suggests that infection is not just in the blood, it is in the brain. Newborns should not have seizures, and a seizure in a newborn is almost never benign.
Quickly I called my ICU attending, who agreed that we change the orders to an ICU admit. Since I was the PICU resident, the transition was simple. Besides giving the child medication to control the seizures, very little had to be changed in the orders. Just as before, we would have to do a spinal tap, draw blood cultures, and watch. We also ordered a scan of the brain to look for a cause for the seizure.
Unfortunately, Amber continued to seize, and we decided to put a breathing tube down her throat and hook her up to a respirator. We did this for two main reasons: First, when Amber seized she did not breathe well and this gave us, in medical parlance, control of the airway; and second, it would allow us to more judicious use of anti-seizure medications, most of which are sedating enough to stop her breathing.
She got through the night in relatively stable condition. At eight o’clock the resident team rounded with Dr. Beard, the PICU attending. When we got to Amber, I presented the facts of the case, and, after reviewing the patient history and lab data, Dr. Beard’s only comment was, “We’ll do the antibiotics and check the culture and scan, but I know she has HSV encephalitis, and she is going to die. Vegetable at best.” HSV meant Herpes Simplex Virus. A highly lethal brain infection usually acquired at birth from mothers who have genital herpes.
I was at the stage in my medical experience (in fact, I think I am still at that stage now) where I was reluctant to conclude the worst about a patient until all the facts were in. Call it magic realism, but my thinking was that as long as there was a tenable chance that Amber did not have HSV, she had a chance to live. Dr. Beard was of the wizened school of thought. To him, it did not matter what we thought; if Amber had it she had it and the die was cast. All the hoping in the world would make no difference. Perhaps this attitude was born of an innate cynicism, but I thought it was more likely from 20 years of bruised hopes. He did not dare to hope when it was unlikely that there was anything to hope for.
Since Amber was now on a ventilator she had to be accompanied to the CT scanner by a resident. Midmorning we had her as stable as she was going to get and started to roll her out of the door. Her father came in just as we were going out, and we met up with him in the hallway.
“Just a minute. You can see her just for a minute. We have to get her to CT,” the nurse who was going with me said.
He stopped at the side of the stretcher, and reached out his hand to touch her face as fathers do when they watch their children sleep. As I would do many years later when I had an infant of my own.
He said, “You know, I don’t want her to suffer. Don’t keep her alive just because. If you think you need to stop treatments — you know, pull the plug or whatever — you can.”
A chasm opened up between the father and the medical team. Perhaps Dr. Beard had talked to Amber’s parents about discontinuing efforts and he was simply responding to that, but this was the first time I had ever seen a parent volunteer to suspend medical intervention without being prompted. The nurse I was with had more PICU experience than I had, and I could tell from her expression that she also considered his remarks highly unusual. Generally when a catastrophe like this strikes one expects a range of emotional responses, but a nonchalant, almost obsequious “let’s pull the plug” is not one of them.
It may have been an irrational grief reaction. Who knew what I would have done in his place? I filed it away in my mind under the Strange-Fact-But-Let’s-Not-Draw-Conclusions-Yet category.
The CT would confirm Dr. Beard’s intuition. The scan showed signs of necrosis in the temporal lobe of the brain. “Temporal lobe necrosis” is almost a cliché among pediatric residents. That term appears on almost every pediatrics board certification exam, and it means HSV encephalitis. The only thing left was the wait for was the PCR identification (a kind of DNA analysis of the fluid we got in the spinal tap), which at this point was nothing more than the formal proof of what we all took as a plain fact.
Dr. Beard had the responsibility of explaining the situation, and the dismal prognosis, to the parents. The worst part was explaining the why. How did a perfectly healthy newborn baby get herpes simplex? From the mother, of course. The mother, a young woman no more than 22, did not know she had herpes. She had never seen a sore.
Herpes is most commonly passed from mother to child when the mother is has a primary, that is, a first time outbreak, of HSV at the time of delivery. Put another way, she not only had herpes, there was a good chance she had contracted it very recently. Since she has only had one sex partner in the last few years, that meant she probably got it from her boyfriend, Amber’s dad.
For the next two weeks, we nursed Amber along, but there was no improvement. Her seizure activity was constant if she was not constantly sedated. She developed pneumonia. The neurologist we consulted confirmed that the virus had ripped through her pristine brain and turned it to liquid and that there was no hope of anything more than a vegetative state.
Even more than Amber herself, my enduring memory of this miserable case was Amber’s mother. Once she found out what had happened to her baby it was clear she blamed herself completely. She was a blank visage, a ghost that drifted in and out of the PICU each visiting hour. She spoke in whispers, a creature that seemed barely alive. I would find her at the beside at all hours on rounds; she asked no questions, only gently stroked Amber’s hair, taking care not to disturb the monitor wires and tubes running everywhere. She never cried. How could she? Crying is an act of grief. She had so much suffering to do before she even got to that point.
One afternoon as I walked out the front door of the PICU, I spied her through the hall window in the garden next to the hospital. She sat on a bench, alone, and could have been one of the statues. Her boyfriend was nowhere in sight. I can’t remember seeing him again after the pull-the-plug incident. It may be unfair to say that he abandoned her and the baby, but I do not remember seeing him again.
Her hair was pulled into a brown ponytail, her shoulders bare in the early summer heat. I do not think she was crying. I do not think she was feeling. The pain was too large for her to feel. Little by little, I guessed, she would feel that pain in the coming months. She would feel it a tiny part at a time, because no human being can possibly carry that much pain at one time and remain whole.
Every person has his own perception of what the ultimate physical pain would be like. But the ultimate psychological pain is not debatable. We can all agree that it is losing a child, and feeling completely responsible for it. There is no loss so great, no guilt so crushing. Killing your own child, even accidentally, must feel like the unforgivable crime against nature, the defeat of your own biological and moral purpose. To be entrusted with a human life, all too perfect, and to let it slip through your fingers in only two weeks’ time. A lusty cry at midnight forever silenced. And you feel it is your fault.
I have never felt sorrier for any patient or patient family member. A psychologist might say I should feel empathy for her, or sympathy, but I felt neither of those clinical terms. I felt desperately sorry for her.
I had a few words with her over the ensuing weeks, scattered attempts at clinical empathy, but there was no bridging that space between us. She had to suffer, that was all. She had to do it alone. It was ordained.
Some time later it occurred to me that the father’s “pull the plug” action might have been an act of guilt in its own right. He probably gave Amber’s mom the HSV, and knew it. I could imagine that he got it cheating on her. Certainly she knew that the HSV had to come from him, and she would naturally have demanded to know where he got it from. He may have had it for years, or perhaps he had contracted it very recently. Recent was more likely because, as I noted before, primary HSV infection is more likely to cause neonatal encephalitis than recurrent episodes. More than likely he got it recently, and gave it to her recently. I recalled a comment in a psych textbook from medical school that said husbands often stray from their wives during the middle to late stages of pregnancy. For the father, pulling the plug would have been a violent response to the accusation of infidelity — a way to shorten the agony of having to look at the evidence of what he had done.
This is just conjecture on my part. His absence shortly after he learned that the child was dying from HSV, and the mother’s complete silence about it, might be taken as evidence in support of my educated guess.
That is the end of my memory tape. Amber did not die in any dramatic fashion. She died as most people do, a fading ember in the darkness. She did not feel any pain. Her mother, I am sure, bore all the pain for her, just as she had done all the breathing and eating and drinking and rejoicing for her during the very recent nine months Amber had been in utero. I ardently hope that she eventually went on to do all the living for Amber, too.
When I was a resident at Children’s Hospital of New Orleans, I did a required month in the Pediatric Intensive Care Unit (PICU). The PICU month was brutal one by my program’s standards – call every third night, a unit full of children on ventilators, children recovering from heart surgery, even cancer patients on chemotherapy. Unlike some rotations, overnight call really did carry the potential for staying up all night. And then there was the death. Though thankfully patients did not die all that often, in pediatrics the death of a patient is personal to a degree rarely matched in adult medicine. A death in the PICU was worth ten on the adult wards.
It has always interested to me how much emotional mileage we get out of blaming the patient. It is not something I or any other heath care worker consciously does, but we do it. When an adult suffers and dies, unconsciously, almost reflexively, we think they deserve it, or at least we say to ourselves that the patient had the opportunity to live a good life and if he didn’t it was his own fault. Without the benefit of longevity, children leave us no room for such thinking. Children are innocent, and when a child suffers hideously and capriciously it seems so completely unfair. Not only deprived of life, the child is deprived of even the gift of a past, and for the pediatric doctor this means there are no past transgessions to blame the death on. Thus the pain is magnified.
In the second week of my PICU month I was called to the emergency room for a late night admission. It was an unusually busy night, and the floor residents were having trouble keeping up with admits. I was asked to help out. Going down to the ER, I found waiting for me a two week-old baby with a fever of 102. Newborn babies with fevers are always regarded with great concern in pediatrics. During the period of childbirth an infant can contract any one of several deadly infections, and without immediate medical attention, the mortality risk is very high.
Baby Amber was a perfect-looking neonate. Good weight, normal head circumference, no visible signs of dehydration. She looked a little pale, but sick children can be like that – looking awful one minute and playing and sucking at the bottle the next. So there was not necessarily a cause for alarm. I examined her, ordered antibiotics and started writing orders to send her to the floor. Hopefully the blood cultures would check out all right, and mother and child would go home in three days.
While I was writing up the orders, Amber had a seizure. This immediately raised the stakes — if a fever in a newborn is worrisome, a seizure combined with a fever is a harbinger of real danger. It suggests that infection is not just in the blood, it is in the brain. Newborns should not have seizures, and a seizure in a newborn is almost never benign.
Quickly I called my ICU attending, who agreed that we change the orders to an ICU admit. Since I was the PICU resident, the transition was simple. Besides giving the child medication to control the seizures, very little had to be changed in the orders. Just as before, we would have to do a spinal tap, draw blood cultures, and watch. We also ordered a scan of the brain to look for a cause for the seizure.
Unfortunately, Amber continued to seize, and we decided to put a breathing tube down her throat and hook her up to a respirator. We did this for two main reasons: First, when Amber seized she did not breathe well and this gave us, in medical parlance, control of the airway; and second, it would allow us to more judicious use of anti-seizure medications, most of which are sedating enough to stop her breathing.
She got through the night in relatively stable condition. At eight o’clock the resident team rounded with Dr. Beard, the PICU attending. When we got to Amber, I presented the facts of the case, and, after reviewing the patient history and lab data, Dr. Beard’s only comment was, “We’ll do the antibiotics and check the culture and scan, but I know she has HSV encephalitis, and she is going to die. Vegetable at best.” HSV meant Herpes Simplex Virus. A highly lethal brain infection usually acquired at birth from mothers who have genital herpes.
I was at the stage in my medical experience (in fact, I think I am still at that stage now) where I was reluctant to conclude the worst about a patient until all the facts were in. Call it magic realism, but my thinking was that as long as there was a tenable chance that Amber did not have HSV, she had a chance to live. Dr. Beard was of the wizened school of thought. To him, it did not matter what we thought; if Amber had it she had it and the die was cast. All the hoping in the world would make no difference. Perhaps this attitude was born of an innate cynicism, but I thought it was more likely from 20 years of bruised hopes. He did not dare to hope when it was unlikely that there was anything to hope for.
Since Amber was now on a ventilator she had to be accompanied to the CT scanner by a resident. Midmorning we had her as stable as she was going to get and started to roll her out of the door. Her father came in just as we were going out, and we met up with him in the hallway.
“Just a minute. You can see her just for a minute. We have to get her to CT,” the nurse who was going with me said.
He stopped at the side of the stretcher, and reached out his hand to touch her face as fathers do when they watch their children sleep. As I would do many years later when I had an infant of my own.
He said, “You know, I don’t want her to suffer. Don’t keep her alive just because. If you think you need to stop treatments — you know, pull the plug or whatever — you can.”
A chasm opened up between the father and the medical team. Perhaps Dr. Beard had talked to Amber’s parents about discontinuing efforts and he was simply responding to that, but this was the first time I had ever seen a parent volunteer to suspend medical intervention without being prompted. The nurse I was with had more PICU experience than I had, and I could tell from her expression that she also considered his remarks highly unusual. Generally when a catastrophe like this strikes one expects a range of emotional responses, but a nonchalant, almost obsequious “let’s pull the plug” is not one of them.
It may have been an irrational grief reaction. Who knew what I would have done in his place? I filed it away in my mind under the Strange-Fact-But-Let’s-Not-Draw-Conclusions-Yet category.
The CT would confirm Dr. Beard’s intuition. The scan showed signs of necrosis in the temporal lobe of the brain. “Temporal lobe necrosis” is almost a cliché among pediatric residents. That term appears on almost every pediatrics board certification exam, and it means HSV encephalitis. The only thing left was the wait for was the PCR identification (a kind of DNA analysis of the fluid we got in the spinal tap), which at this point was nothing more than the formal proof of what we all took as a plain fact.
Dr. Beard had the responsibility of explaining the situation, and the dismal prognosis, to the parents. The worst part was explaining the why. How did a perfectly healthy newborn baby get herpes simplex? From the mother, of course. The mother, a young woman no more than 22, did not know she had herpes. She had never seen a sore.
Herpes is most commonly passed from mother to child when the mother is has a primary, that is, a first time outbreak, of HSV at the time of delivery. Put another way, she not only had herpes, there was a good chance she had contracted it very recently. Since she has only had one sex partner in the last few years, that meant she probably got it from her boyfriend, Amber’s dad.
For the next two weeks, we nursed Amber along, but there was no improvement. Her seizure activity was constant if she was not constantly sedated. She developed pneumonia. The neurologist we consulted confirmed that the virus had ripped through her pristine brain and turned it to liquid and that there was no hope of anything more than a vegetative state.
Even more than Amber herself, my enduring memory of this miserable case was Amber’s mother. Once she found out what had happened to her baby it was clear she blamed herself completely. She was a blank visage, a ghost that drifted in and out of the PICU each visiting hour. She spoke in whispers, a creature that seemed barely alive. I would find her at the beside at all hours on rounds; she asked no questions, only gently stroked Amber’s hair, taking care not to disturb the monitor wires and tubes running everywhere. She never cried. How could she? Crying is an act of grief. She had so much suffering to do before she even got to that point.
One afternoon as I walked out the front door of the PICU, I spied her through the hall window in the garden next to the hospital. She sat on a bench, alone, and could have been one of the statues. Her boyfriend was nowhere in sight. I can’t remember seeing him again after the pull-the-plug incident. It may be unfair to say that he abandoned her and the baby, but I do not remember seeing him again.
Her hair was pulled into a brown ponytail, her shoulders bare in the early summer heat. I do not think she was crying. I do not think she was feeling. The pain was too large for her to feel. Little by little, I guessed, she would feel that pain in the coming months. She would feel it a tiny part at a time, because no human being can possibly carry that much pain at one time and remain whole.
Every person has his own perception of what the ultimate physical pain would be like. But the ultimate psychological pain is not debatable. We can all agree that it is losing a child, and feeling completely responsible for it. There is no loss so great, no guilt so crushing. Killing your own child, even accidentally, must feel like the unforgivable crime against nature, the defeat of your own biological and moral purpose. To be entrusted with a human life, all too perfect, and to let it slip through your fingers in only two weeks’ time. A lusty cry at midnight forever silenced. And you feel it is your fault.
I have never felt sorrier for any patient or patient family member. A psychologist might say I should feel empathy for her, or sympathy, but I felt neither of those clinical terms. I felt desperately sorry for her.
I had a few words with her over the ensuing weeks, scattered attempts at clinical empathy, but there was no bridging that space between us. She had to suffer, that was all. She had to do it alone. It was ordained.
Some time later it occurred to me that the father’s “pull the plug” action might have been an act of guilt in its own right. He probably gave Amber’s mom the HSV, and knew it. I could imagine that he got it cheating on her. Certainly she knew that the HSV had to come from him, and she would naturally have demanded to know where he got it from. He may have had it for years, or perhaps he had contracted it very recently. Recent was more likely because, as I noted before, primary HSV infection is more likely to cause neonatal encephalitis than recurrent episodes. More than likely he got it recently, and gave it to her recently. I recalled a comment in a psych textbook from medical school that said husbands often stray from their wives during the middle to late stages of pregnancy. For the father, pulling the plug would have been a violent response to the accusation of infidelity — a way to shorten the agony of having to look at the evidence of what he had done.
This is just conjecture on my part. His absence shortly after he learned that the child was dying from HSV, and the mother’s complete silence about it, might be taken as evidence in support of my educated guess.
That is the end of my memory tape. Amber did not die in any dramatic fashion. She died as most people do, a fading ember in the darkness. She did not feel any pain. Her mother, I am sure, bore all the pain for her, just as she had done all the breathing and eating and drinking and rejoicing for her during the very recent nine months Amber had been in utero. I ardently hope that she eventually went on to do all the living for Amber, too.