Pantanal, Mato Grosso, Brazil
I was the chief resident in pediatrics and covering my home hospital’s neonatal intensive care unit as the admitting physician when I got a phone call from my obstetrical colleague. She wanted to tell me that she had an impending delivery that would require my assistance in the delivery room. The infant would be an extremely premature, low birth weight infant that would likely require resuscitative efforts and, if surviving delivery, months of intensive care unit support. I appreciated the heads up because it allowed me to visit the parents in the obstetrical unit, introduce myself, and let them know what to expect in the next few hours. I was a little surprised, though, when I met them because even though their obstetrician had informed them of the vulnerability of their infant, they did not seem anxious or concerned. I started explaining some of the procedures that would likely be needed, such as ventilator support and intravenous access, when the father held his hand up to stop me. “We don’t need to know any of that,” he said, and he looked to his wife, who nodded in agreement. She then explained to me that the baby was going to be adopted. Arrangements had already been made through an agency because when she realized she was pregnant, she knew she didn’t want another child, but she didn’t “believe in abortion.” So, she carried the infant to delivery.
The infant did require resuscitation at delivery, and once we had a modicum of stability in the delivery room, the infant was rushed to the neonatal ICU. The infant remained in the ICU for almost six months and on life support for nearly three months. He developed most of the complications associated with extreme prematurity—chronic lung disease requiring a permanent breathing tube placed on the outside of his neck and into his windpipe, intracranial hemorrhages requiring a permanent shunt between his brain and his abdomen, a tube placed outside his belly and into his stomach to allow liquid feedings, and retinal hemorrhages that left him blind. At six months of age, he was moved from the neonatal ICU to the pediatric ICU. He would never leave an acute care setting because he required ongoing critical care that would not be available any other way. His life will be marked by frequent painful interventions such as mechanical ventilation, intravenous access, and life in a busy ICU with constant noise and light. He would never be part of a family, although pediatric ICU nurses would provide extraordinary, loving care. The chances of long-term survival were non-existent.
The parents left the hospital after two days and never looked back.
As a third-year medical student doing a clinical rotation in obstetrical medicine, I had a 19-year-old female admitted in active labor with her third baby. She required a C-section, mostly because her previous deliveries had also been via C-sections. As soon as she arrived in the delivery suite, she started begging everyone she saw to please help her get a tubal ligation (surgical sterilization) to prevent future pregnancies. She knew that the procedure could be performed easily at the time of the C-section because her obstetrician had given her that information at the time of her second pregnancy. But she was a Medicaid patient, and Medicaid would not pay for a tubal ligation until she was twenty-one. When she was told that she could only get the procedure if she paid for it out of pocket, she just stopped talking. I don’t know that I will ever forget the look of apathy and helplessness on her face. When the baby was delivered, she refused to look at her or hold her. It left such an impression on me that, days later, I retrieved her hospital chart to look over her history. Apparently, she had married at 16 with her first pregnancy, but she and her teenage husband had little family support and constantly teetered on the edge of a financial cliff. Neither had graduated high school, and both worked unskilled jobs. She had tried oral contraceptive methods but was intolerant of the meds. So now, we have impoverished teenagers parenting three babies and falling further and further into a social and financial abyss. All because their government-sponsored health care had restrictions that harmed them and their children. Learned helplessness that will become generational.
When I covered the neonatal ICU, my presence was required at all high-risk deliveries. Sometimes, I was called to spontaneous late-term miscarriages because even though the fetus would not be considered viable (able to survive outside the maternal womb), resuscitation might keep the fetus alive for a brief period. One of the standard procedures in this situation was to bring a scale into the delivery room. Resuscitation was not even attempted if the infant weighed less than 500 grams (about 17 ounces or equivalent to a package of butter). If the fetus weighed at least 501 grams, we would attempt resuscitation, which was often futile. What did this mean for the parents? If we did not attempt resuscitation, the fetus was considered a miscarriage. The hospital was responsible for the fetal remains. If we tried resuscitation and it was unsuccessful, it was an infant’s death. The parents were responsible for arranging for burial, including notifying a funeral home to pick up the infant’s body and arranging all ceremonies accompanying death.
This is true: No matter the law, women will continue to get abortions. And, as is often the case, women of privilege and wealth will find safe, hygienic methods. Women on the margins of society, poor and unsupported, will seek abortions in brutal conditions. They will allow strangers to poke knitting needles and wire hangers into their wombs and fill their uterus with Lysol, scalding-hot water, or lye. They will risk death to get an abortion, and many will die horrible deaths.
What do these stories mean? There are no easy answers—sometimes, there is not even a right answer. There are only fewer wrong answers. But it screams out to me that when the issues involve health care, the only participants in the dialogue should be the patient and their physician.
The most challenging part of my job as a pediatric physician was counseling the parents of a child in the process of dying. It never became a rote behavior; it was always an emotional struggle. And the dying process in an ICU is a surreal event because of ongoing life support to the lungs and the heart—the monitor beeps the cardiac rhythm, and the chest rises and falls with the ventilator. But one thing everyone—physicians, parents, supreme court justices—agree on is that brain death equals human death. We can keep hearts beating and lungs ventilating through artificial means, but death occurs if there is no brain wave activity. As the physician, I can terminate artificial life support with the declaration of death. Or, as one of my surgical colleagues once said, “When it’s obvious that God has his hands on your patient, then it’s time for us to take our hands off.”
The human fetus does not have brain wave activity until the sixth week of gestation. The fetus is receiving life support through the maternal body. If there is no brain wave activity in the fetus, is this not analogous to brain death in my patient? Why can’t life support be terminated in this situation? At what point do we want to insist that life has begun? At inception? At what point does death occur? When the body decomposes?
I don’t agree with all the nuances of anti-abortion laws that stress whether the pregnancy resulted from incest or rape or whether the mother’s health would be negatively impacted. Once life begins (initiation of brain wave activity), we are arguing only the merits of each life. That is a decision that MUST be between the mother and her physician in the same way that decisions about when to terminate life support in a dying or dead patient must be between the patient’s family and the physician.
And if there is no brain wave activity, there is no life.
I was a mother before I was a doctor. As a mother, I was UNAWARE that children like my young daughter were being killed every day in this country. Child abuse was something that always seem to exist only at the periphery of civilization and even though I was aware that it existed, it had never touched me or my friends, or anyone I knew.
Then, I started a career in pediatric medicine and I found out that the THING no one I knew talked about was a very real problem. At that time, the number 4 cause of death in children < less than 5 years of age in the United States was homicide. Today, firearms are the 2nd leading cause of death in children < less than 5 years of age. One statistic that has remained stable over the last 50 years is that childhood mortality continues to be higher in the United States than in most of its international peers, in substantial part, because of the excess mortality from injury and violence. In comparison to Japan and Sweden, childhood mortality from homicide, suicide, and unintentional injuries is about 2 – 4 times higher in the United States.
So, for those of you that are appalled that we are once again witnessing the aftermath of an event where young children were slaughtered in their classroom because “this is the United States, for God’s sake”. YOU. HAVE. NOT. BEEN. PAYING. ATTENTION.
Please, allow me to repeat that – in this country, for a very, very long time, we have failed our children. Again and again.
In the early days of my career, I honestly believed that if people were made aware of how many children were being tortured and killed in this country, Americans would do everything they could to stop it. So, I went to PTA meetings and to school board meetings to talk about ways to identify abused children and how to intervene. I spoke to education classes at my local University on child abuse cases. I taught doctors in training on the injury syndromes suggestive of child abuse. I operated a weekly clinic that examined children referred from the Department of Human Resources as possible child abuse cases, in particular suspected child sexual abuse. I consulted with other physicians when they were concerned about the possibility of child abuse with one of their patients. My local district attorney began to rely on me as an expert witness on child abuse cases. Unfortunately, for every 10 cases he called on me to review, only one would actually go to trial.
On and on it goes. I am ashamed to admit that despite all the years I testified in child abuse cases, it was not until very late that I realized why I was failing. For most people sitting in a jury box, the term we used to denote brain injury in abused children—Shaken Baby Syndrome—seemed to diminish the ferocity of the assault on a baby’s brain. The term came from medical literature and basically referred to a high-velocity acceleration and then deceleration of a baby’s head. But the term…there was not a single parent sitting in that jury box that did not remember a time when they had taken their child’s shoulders in frustration and shook them and I’m sure hesitated to convict an abusing parent because of a ‘there but for the Grace of God’ emotion.
The term Shaken Baby Syndrome did not convey the violence of the attack on the child. So, the district attorney and I came up with another method to demonstrate to the jury how the child might have been injured. The attorney would hand me a doll, about the size of an 18-month human baby, and I would demonstrate the type of violent attack that might have produced the injury—swinging the doll by an arm or foot until the head contacted a solid structure (the floor, a door, a wall). That one little maneuver was more effective than all the words on the witness stand had been.
So, I have a modest proposal. Most Americans have not seen a gunshot victim. The only visual they have is the very unrealistic depiction of humans who have been shot in television or movies. Usually, the victim grabs the wound, sometimes realistic-looking blood pulses from the wound, and then they ‘die.’ Quietly.
That’s not how real gunshot victims die. They do not die quietly. They die in pain, minutes of suffering, and howls of anguish. The wound not only propels or gushes blood but the tissues around the wound are torn—red and jagged. The wound gapes, sometimes you can actually see inside the victim’s body. Humans, even young humans, cluster together in moments of terror. So, the victim’s bodies would pile on top of each other—a mountain of carnage encased in torn flesh and slick with blood.
Americans need to see the consequences of their failure to protect the youngest and most vulnerable of our society. We need to see the visual of their slaughter—not the pretty photos from their life shared in moments of silence on TV for the next few days and then we move on to the next news item. If we saw the gruesome deaths, would it change anything? I don’t know but without a doubt, a nation that cannot protect its children is doomed to failure. And somewhere—another shooter is planning an attack.
The first thing you need to know about monkeypox is that it’s probably NOT spread by monkeys. I say probably because no one actually knows the animal reservoir, although rodents are highly suspect. The reason it is called Monkeypox is that the virus causing the disease was first isolated in laboratory monkeys in 1958. It was mostly of academic interest until the first human case was confirmed in 1970, in a 9-year-old boy from previous Zaire. Since then, most human cases were reported in only 10 countries located on the western and central African continent. It is considered a zoonotic disease (spread from an animal vector to humans) with the only inter-human transmissions documented having occurred from very close and prolonged contact. The largest human outbreak recorded has been less than 200 suspected cases. Remember in a previous blog posting (5 August 2020), I mentioned that the term spillover refers to the moment a zoonotic virus passes to a human that then passes the virus to another human. The term is important because today we are witnesses to a spillover event.
The monkeypox virus is an MPXV virus, a member of the genus Orthopoxvirus within the family poxviridae. Other orthopoxviruses that cause infections in humans include variola (smallpox), vaccinia (smallpox vaccine), and cowpox. Symptoms of monkeypox infection include fever, rash, respiratory symptoms, and lymphadenopathy.
When I was in medical school, MPXV was generally considered an exotic virus. As a pediatrician, I was intrigued by an American outbreak of monkeypox in 2003 because many of the cases were in children. But the numbers in that outbreak were very small (around 40 confirmed, ~80 suspected) and all cases were due to contact to MPXV infected prairie dogs bought as pets. (The prairie dogs were infected by being housed in close proximity to infected rodents imported from Ghana to Texas.) There were zero human-to-human transmissions and zero fatalities. In July and November 2021, two travelers independently carried the virus to the United States from Nigeria. Those have been the only reported cases in the US…. until the last few days.
In 2010, a report in the Proceedings of the National Academy of Sciences reported a major increase in human monkeypox incidence 30 years after smallpox vaccination campaigns ceased in the Congo. Why is that? Because smallpox vaccinations give almost 85% protection for monkeypox. But remember that WHO declared the world free of smallpox on May 8, 1980, and global efforts at vaccination ceased. I, personally, was revaccinated with the smallpox vaccine after 9/11, when the US government became more concerned about smallpox being utilized as biological warfare. Alabama wanted physicians vaccinated and ready to respond in the event of a terror event.
Today, we are witnessing a spillover event. This week, WHO reported over 80 cases of monkeypox in 11 different countries. In the UK alone, the first case was identified on May 7th and has since doubled. The US has reported a case in Massachusetts. What is especially notable about these cases is the absence of association with an animal vector. That leaves the very real possibility of inter-human transmission AND a change in the transmissibility pattern of an old virus. Does that sound familiar? It should. I remember my first reaction as Covid started spreading was, how can this be? It’s a coronavirus.
I don’t think people should be alarmed. For one thing, as awful as the photos of infected people may look, the pustular rash is actually a good thing. Unlike the 40% of infected Covid patients who had no symptoms but were communicable, it will be easy to contact trace because of the rash. Secondly, we have a vaccine effective against this virus. Thirdly, we do have antiviral meds that can ameliorate symptoms. Fourthly, the disease seems to be self-limited. Human cases in rural central and western Africa, where medical resources are limited, have a mortality of 1-10%.
At this moment, I am not alarmed about the possibility of a pandemic. But I am intrigued (intellectually speaking) by bearing witness to a spillover event. I think there is a very real possibility that we will see a large increase in cases in the near future.
Buckle up – let’s see if the world has learned anything at all about public health from the Covid pandemic. Pardon me if I am ambivalent about what we may have learned. My brain has still not been able to cope with the idea of 1 million American deaths, 700,000 of which occurred AFTER the development of a vaccine.
Breaking News: WHO has just called for an emergency meeting as over 100 cases of monkeypox are confirmed or suspected in Europe.
I realize I’ve had a long latency in my blog posting. It has been a busy, busy few weeks. First, this semester of graduate school was the final one for me. I’ve finished all my coursework—now all I have to do is my final dissertation! But in addition to grad school, I have also been involved in a very intense 5-week course on personal knowledge management called Building a Second Brain. It’s stimulating, and I’m learning a lot, but, as I said, it’s INTENSE! And then, finally, I’m moving out of my home of almost 25 years. I’ve been saying for a few years now that I’m overdue for my Swedish death declutter, so the move is undoubtedly providing the incentive to do just that, but I must admit, I’ve been feeling overwhelmed.
But I always seem to find time to read. I recently finished a new book by one of my favorite authors, Brené Brown. The book is called Atlas of the Heart, and the author attempts to give language to emotion—an ability that psychologists refer to as emotional granularity. Why is this important? Because language allows us to make sense of what we are experiencing, words bridge understanding for ourselves and connections to other members of our human family; as the author states, “Language speeds and strengthens connections in the brain when we are processing sensory information. But newer research shows that when access to emotional language is blocked, our ability to interpret incoming emotional information is significantly diminished. Likewise, having the correct words to describe specific emotions makes us better able to identify those emotions in others.” Frankly, as divided as American society seems to be, any strengthening of human connection would be a positive. I highly recommend Brown’s book. It is well-written, flows well, and is easy to read. Most readers will find it applicable to some of their own life experiences.
A chapter in Brené’s book that resonated most with me was entitled ‘Places We Go When We’re Hurting.’ The emotions she wrote about in this chapter are ones that we have all experienced—anguish, hopelessness, despair, sadness, and grief. I don’t know that I will ever be able to wrap my brain around the fact that, in a little over two years, over 7 million human beings died as a consequence of the COVID pandemic. And I know that I’m not unique in my feelings of loss and despair.
In writing about anguish, Brené shared an image of an oil painting that profoundly affected me. The painting is called, aptly enough, Anguish and was painted in 1878 by August Friedrich Schenke. It has been displayed at the National Gallery of Victoria in Melbourne, Australia since 1880 and has twice been voted one of the gallery’s most popular works. I don’t know that I can explain why a painting of a mother sheep standing over the dead body of her lamb affected me so deeply, but it did. Here is the painting:
I would be interested in any comments about your reactions to the painting. Did it affect you as profoundly as it did me?
So, as I gazed at the painting and reflected on the feelings of hopelessness and anguish we all feel when we lose connection to a loved one, I also thought about how humans have always dealt with these emotions. Connection seems to be critical—connection to one’s spirituality, connection to family, friends, and often connection through creativity.
I guess you’re wondering what photographs of Jupiter have to do with anguish? One of the best writings I have ever read about loss and grief was by Pat Monohan, lead singer for the band Train. Monahan wrote “Drops of Jupiter” soon after his mom passed away following a battle with cancer. In the song, he imagines that after dying, his mom’s spirit could go anywhere, and so a person would be likely to go explore the universe. You can check out the video here: youtube.com/watch?v=7Xf-Lesrkuc
As he explained in a Buzzfeed News interview, “It’s a story about my mother coming back after like swimming through the planets and finding her way through the universe, and coming back to tell me that heaven was overrated and [to] love this life, you know?
Drops of Jupiter in her hair is one of the most beautiful poetic metaphors I’ve ever read, I think. And the idea that those we have lost will come back to us after touring around the universe—to teach us, to continue to love us—is also beautiful.
Here are the lyrics to Monohan’s song that I’ve interspersed with some of my artwork—inspired by the song’s lyrics. The idea is that the connection between a mother and her child cannot be broken by death.
Now that she’s back in the atmosphere
Reminds me that there’s time to change, hey, hey
Since the return of her stay on the moon
But tell me did you sail across the sun
And that heaven is overrated?
Tell me, did you fall from a shooting star
Now that she’s back from that soul vacation
Tracing her way through the constellation, hey, hey
Reminds me that there’s room to grow, hey, hey, yeah
Now that she’s back in the atmosphere
But tell me did the wind sweep you off your feet
And head back to the milky way
And tell me, did Venus blow your mind
Can you imagine no love, pride, deep-fried chicken
Even when I know you’re wrong
Five-hour phone conversation
The best soy latte that you ever had, and me
I wish you the best while you explore your own universe!
A dear friend of mine recently lost her canine companion of many years. I understood her grief as I’m sure many of you do also. The sad, sad news made me seek out my fur family and cling to them. It also created some reflection on words that are not mine but in which I have found solace.
“Not the least hard thing to bear when they go from us, these quiet friends, is that they carry away with them so many years of our own lives.”
“Dogs’ lives are short, too short, but you know that going in. You know the pain is coming, you’re going to lose a dog, and there’s going to be great anguish, so you live fully in the moment with her, never fail to share her joy or delight in her innocence, because you can’t support the illusion that a dog can be your lifelong companion. There’s such beauty in the hard honesty of that, in accepting and giving love while always aware that it comes with an unbearable price. Maybe loving dogs is a way we do penance for all the other illusions we allow ourselves and the mistakes we make because of those illusions.”
Dean Koontz, The Darkest Evening of the Year
“It is a fearful thing to love what death can touch.“
“I have sometimes thought of the final cause of dogs having such short lives and I am quite satisfied it is in compassion to the human race; for if we suffer so much in losing a dog after an acquaintance of ten or twelve years, what would it be if they were to live double that time? The misery of keeping a dog is his dying so soon. But, to be sure, if he lived for fifty years and then died, what would become of me?”
Sir Walter Scott
“You think dogs will not be in heaven? I tell you, they will be there long before any of us.”
Robert Louis Stevenson
Dogs’ lives are too short. Their only fault, really.
Agnes Sligh Turnbull
“If having a soul means being able to feel love and loyalty and gratitude, then animals are better off than a lot of humans.”
“We who choose to surround ourselves with lives even more temporary than our own, live within a fragile circle; easily and often breached. Unable to accept its awful gaps, we would still live no other way. We cherish memory as the only certain immortality, never fully understanding the necessary plan.”
Irving Townsend, The Once Again Prince
“If there is a heaven, it’s certain our animals are to be there.
Their lives become so interwoven with our own, it would take more
than an archangel to detangle them.”
“The one absolutely unselfish friend that man can have in this selfish world, the one that never deserts him, the one that never proves ungrateful or treacherous, is his dog.”
“It came to me that every time I lose a dog they take a little piece of my heart with them, and every new dog who comes into my life gifts me with a piece of their heart. If I live long enough, all of the components of my heart will be dog and I will become as generous and as loving as they are.”