The Sad & Tragic ‘Life’ of TK
By Edison McDaniels, MD | surgeonwriter.com | nonfiction
Keywords: nonfiction, brain death, coma, miracle
This one is gonna be hard folks. Fair warning.
Recently, after reading my series on the dubious claims of miraculous survival after brain death, see The Hand of God?, one of the readers of this blog brought the following sad and tragic case to my attention. Here is the link for it: Long Survival Following Bacterial Meningitis-Associated Brain Destruction, but I have included a summary below.
The facts are these. A previously healthy four year old boy complains of a headache and within twenty-four hours lies comatose in an intensive care unit. In fact, on arrival in the ER, he has fixed and dilated pupils—a terribly ominous, but reversible, sign of brain stress and injury. A lumbar puncture (spinal tap) is performed and the recovered spinal fluid is cloudy (another ominous sign). Cultures of that fluid would ultimately grow H influenzae type b. This kid is suffering from a fulminant form of meningitis.
This is every parent’s nightmare scenario. He’s immediately treated with high dose, highly potent antibiotics, but it’s too late. He requires intubation and is placed on a ventilator, never to come off of it. And, apparently with remarkable rapidity, he develops a malignant form of increased intracranial pressure—we are told the increased pressure is sufficient enough to spilt the child’s skull sutures. Such high pressure would be fatal in any previously healthy person over the age of 12-18 months. It would push the brain out the bottom of the skull. This is, in fact, the most catastrophic event in neurosurgery, universally fatal. Game over.
Despite evidence of EEG inactivity, his family refuses to withdraw life support. The ventilator is continued, as are the remarkable and constant efforts to maintain the child’s body otherwise. He is treated aggressively for fluid and electrolyte imbalances. His blood pressure is supported with medication. His hormones, cortisol and others, are replaced. He requires lifelong cortisol replacement, as well as intermittent treatment for excessive urine output. All of these functions are normally coordinated by a functioning brain.
He never regains consciousness. His numerous infections over the years are treated with antibiotics. He is given fluids by gastric tube, as well as daily tube feedings. He neither acknowledges anyone’s presence, nor complains. By all the evidence, his care is exemplary.
His body dies twenty years after his brain. Of pneumonia after his mother finally decides it is enough and denies him yet another round of antibiotics.
Unfortunately, the story does not end with his death. An autopsy is done, limited to the brain only. The head is small, microcephalic is the term. This is understandable, since without the impetus of a growing brain pushing outward, the skull has no impetus to grow. It becomes unusually thick instead, since it still has blood flow.
The outer portion of the brain, along with its outer coverings, are calcified and stone-like. It requires a saw to cut through them.
The inner portion of the brain is gelatinous and soft. A mucousy scum of sorts, totally devoid of any recognizable brain structure or anatomy. In fact, the crud of the infection is still present since there was no blood supply to bring the body’s scavenger cells to the scene. Normally, such debris would have been carted off and replaced with scar.
It’s clear this is a dead brain, one utterly and completely devoid of any and all neurologic function.
But is this a case of miraculous survival after brain death?
There is no question—in this high tech era—a body can ‘live’ (that is, be kept alive) without the brain, but what exactly is the definition of life?
This case is remarkable for the length of survival (twenty years maintained on artificial life support puts this in a class by itself) and the heroic (and no doubt expensive) care required to allow that survival.
But to what end? He had failed every test of brain function. This child was truly brain dead and was never going to wake-up.
Such survival must be quite exceptional, in that very few individuals have the resources to pay and care for such a damaged patient. As indicated in the report, constant attention was necessary to maintain an acceptable homeostasis (internal melieu or physiologic environment) in which the surviving body could go on. It’s remarkable his care givers (family, doctors, nurses, aides, etc.) were able to keep him going for so long. Remarkable all the more that his family kept up the effort.
And ethically dubious.
He was perhaps ‘living’ in the biological sense, but was this individual ‘alive’ in the usual and humanistic sense of the term? Perhaps this is the ‘natural’ history of death when one intervenes to play God and keep the biological entity going once the soulful entity has departed.
This is not so much a miraculous survival after brain death as it is a failure on the part of the physicians involved to step up to the plate and guide this family—compassionately, with grace and dignity—through the dying process. It’s a testament to how far technology has advanced, and the growing gap between the possible and the ethical.
This isn’t life, people. It’s a sad and grotesque mismeasure of biology. It’s a frog prep, and as any biology major knows, we destroy those at the end of the day. Pity nobody had as much compassion for this child.