Neurologically Devastated Children, Joe Egg, and Religious Coping

Obligatory Introductory Quotations

“I only know we don’t live twice, / therefore – shun death, is my advice”

Robert Browning, Arcades Ambo

 

“You lived what anybody gets, Bernie. You got a lifetime.”

Death, The Sandman #43 by Neil Gaiman


Vignette #1

Allow me first to tell you about a young man named Cameron (named changed to protect privacy, etc… etc….). Cameron is a sixteen year old who just got his driver’s license a few months ago, adored by his family. Cameron was a smart kid – an A+ student, certainly college-bound – an athlete, a baseball player, very talented from what I understand. Sadly, he is no longer smart or athletic, because somehow he drove his car off the highway into a pole and he has been in a coma for a little over a month now.

I’ve seen his brain MRI. You can guarantee he is no longer smart or athletic, but the difficulty is in saying what he still is. During a conference with his family last week, a child neurology fellow did an excellent job of walking the family through the MRI and explaining what damage had been done, and the likely functional consequences thereafter, should poor Cameron ever wake up. Of course it is hard to be too specific about these things – no one can predict the future, and we cannot know the eloquence of an individual’s brain anatomy down to the cubic millimeter lesions detectable by MRI – however, the general picture of Cameron’s life outside the ICU is pretty clear. The most likely scenario is that he will be able to breath on his own with a tracheostomy tube, but will be quadriplegic and largely unresponsive. He will likely not be able to recognize his father’s voice or squeeze his mother’s hand, though one cannot say for sure.

You can imagine this is a difficult sort of thing for a family to be told.

The family expressed understanding, asked for patience and support as they make decisions about what to do next, and just before leaving the father gathered the room’s attention: “Those of you who have been closest to us through this time know this, but we are a Christian family, and as such, we are still praying for a miracle for our Cameron. We will continue to pray for a miracle for some time now, and if you believe in such things we would ask that you join us in praying for him whenever you think of it. With time, if we feel there will be no miracle, then we will begin to think about letting our sweet Cameron go.”

In my mind, this is a perfectly reasonable request. The subtle reactions of many of the providers in the conference indicated that they felt otherwise, but hopefully the family did not notice this too much, as it seemed the ones who cared most closely for them and for Cameron were responding with affirmation.

Do miracles happen? What a question. I don’t know myself. I suppose one never could really know that they don’t occur for a number of reasons, and because I have never witnessed one, I certainly don’t know that they do. On the one hand, we know that the vast majority of patients in situations like Cameron’s all over the world and throughout time, have been as described above if they are able to wake up at all. We know that by definition a miracle would be the unexpected, the impossible, or at least the exceedingly improbable, and so if they occur, they occur incredibly rarely. On the other hand, we can’t disprove them because of this very definition. The scientific method is only equipped to investigate repeatable, observable events, which miracles are not. We certainly hear anecdotally of many miracles, and from people we trust – but as I understand it one of the foremost questions in modern academic epistemology is how much weight to give to personal testimonies in the act of forming rational beliefs. I find it hard to cast the thousands of witnesses of miracles as liars or deluded peoples, but I also find it hard to expect miracles to happen. It is an inevitably disappointing task. Until it is not, I suppose, and then it would all have been worth it.

Perhaps the better question, though less ethereal and practical, is not whether miracles happen, but whether a family in such a situation as Cameron’s is justified in hoping and praying for one. Here I think most people, if not thinking them justified in doing so, would at least be sympathetic to their situation.


Illustrative Allusion to Obscure British Stage Play I Read for a Grade

In the 1967 play Joe Egg, British playwright Peter Nichols relates the story of a couple, Brian and Sheila, who care for their neurologically devastated daughter Josephine and cope with the difficulty of this life through black comedy and reenactments of their previous conversations regarding her medical care. In one of these reenactments, they are recalling a conversation Sheila once had with the town vicar.

“You have been praying?” Brian asks, relating the vicar’s portion of this former dialogue.

“What else can I do?” Indeed. I can’t know for sure, but I suspect that Cameron’s family relates to Sheila’s poignant question. “I look at that flawless little body, those glorious eyes, and I pray for some miracle to – get her started. It seems, if we only knew the key or the combination, we could get her moving.”

“What do you want?” The vicar asks. “Magic.”

Wouldn’t that be nice?

Sheila goes on to ask the vicar if he has seen children like Josephine miraculously healed, and he kind to say that he has, but that sometimes the prayer have come up short.

In thinking about the struggle that families like Cameron’s must go through, I found this scene from Joe Egg to be incredibly insightful. In all of modern medicine’s glory, it is still incapable of rescuing children like Cameron and Josephine to their respective former livelihoods. And it may never be able to – the brain is not a regenerative organ, after all – but this is beside the point; it cannot do anything right now, for these people. So as much as we heroic doctors hate to admit it, medicine has failed them in some way, in the same way that it does all of us because we are not immortal creatures. And sometimes there is nothing left for these poor souls to do but to pray. If there were something else to do, there would be no need for a miracle.

“Where’s the harm?” Sheila asks. “What else did we have?”


Vignette #2

There is another family in our ICU currently who we thought would end up in a similar situation. Unfortunately, they still may, but this is less clear now that it seemed before. This is the family of a little four-year-old boy named Dakota (not his real name, etc… etc….). Dakota is the unfortunate little soul who in a brief moment of unavoidable inattention aspirated a beaded necklace at home somewhere in Boondock, Texas. He was immediately thrown in the car and rushed to the nearest hospital, but his heart stopped just seconds from the ER and CPR was performed for five minutes before the boy was revived. The tragic tease of it all is that the next day he was practically normal, before deteriorating rapidly until he ended up on the ventilator in our ICU staring into space and constantly myoclonic with an MRI almost as devastating as our friend Cameron’s.

However, yesterday, as Dakota was extubated, the family reports that he cried “Mommy mommy mommy!” Much of the care team, I think, was quite surprised to hear this. The family, I think, was not. In fact, they had been expecting it.

In visiting Dakota every morning for the past week, and in secretly and curiously following his family’s pastoral care, I came to notice that every morning as I examined this boy I would have to gently remove a special little square blanket to get a look at his feet. It is a blessed blanket, commonly acquired in situations like this for patients from a Pentecostal background. If there is anything to be said about the testimony of humans to the existence of miracles, the Pentecostal Christians I think make the strongest case. This is a group of millions of people throughout the world (the majority in the southern hemisphere) who claim to see miracles in their gatherings on a weekly basis.

Dakota’s medical providers had admitted to their inability to do anything about the damage to his brain. But his family knew he would speak to them because he had a blessed blanket and fervent prayers for a miracle.

They know it will be a long road ahead, and Dakota isn’t going to be the same as he was before this tragedy, but his family wasn’t “just going to be sitting about like Joe Egg”.

And what else could they do?


Obligatory Meditative Closing Quotation

“The self embodied in the body

of every being is indestructible”.

“Weapons do not cut it,

fire does not burn it,

waters do not wet it,

wind does not wither it.

It cannot be cut or burned;

it cannot be wet or withered;

it is enduring, all-pervasive,

fixed, immovable, and timeless”

The Baghavad-Gita

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