Faith in Coma Emergence after Severe Brain Injury

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Parents Believing in Coma Emergence Through the Darkest Hours

By Gordon S. Johnson, Jr.

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My approach towards education about brain injury and coma emergence took a dramatic shift in 2010, when I heard Lethan Candlish’s tour de force Who Am I, Again? It wasn’t Lethan’s voice that grabbed me the most.  When he shifted his narrative voice from that of himself to his mother, I was struck not just by the power of his story, but the common themes he articulated.

“My mother was in her home office when she got the call.’ (He then shifts from a first person narrative to his Mom’s voice.)

‘It was late, after 8:00, I was doing some paperwork when the telephone rang.  I answered and learned that my son had been involved in a serious automobile accident.  He was in a coma?  He had been life-flighted to Geisinger Medical Center?!

And there are moments when the world will freeze.  Thoughts, emotions, it doesn’t make sense.  Frozen, as you try to comprehend what you just heard but the world continues to turn and I need to tell his father: ‘He was ….’  I put down the phone, collected my things, turned out all the lights and made sure to take the dog out before I left.  I didn’t know when I would return.’

These were almost Becca’s words, as we began in Waiting

Lethan’s mother believed. She refused to give up.  She believed Lethan, would wake up.

See my son’s body laid out on the table, tied down with wires and tubes.  Silent.  Still.  And I said Lethan you will live, hear me?  You will live.

Perhaps, Lethan’s father had to believe because his wife did, but the echo of Lethan’s father’s words have stayed with me:

I didn’t sleep a wink, couldn’t sleep in those hospital chairs.

And I knew you (speaking of Lethan) would live.  I didn’t know why I knew.  I didn’t know how I knew.  I knew it didn’t make any sense that I knew but I knew that for once in your life you were going to listen to your mother.

When I sat in Lethan’s audience, I “just knew” it was time to use more stories to teach.

Chris was one of our first interviews for TBI Voices.  Chris was a 15 years when she was walking on a sidewalk and hit by a drunk driver in 1998.   The shock at her daughter’s injury didn’t start with a phone call. She found out sooner because one of her friends heard about the accident on the police scanner.  Her friend suspected that it might be Chris and told her Mom about what she had heard on the scanner.   Finding out this way was particularly terrifying they didn’t know the details, didn’t have the somewhat calming reassurance of the hospital operator telling you to come in. After hearing, Mom went straight to the hospital where she was told only that she was being treated. Thus began the vigil  of waiting for Chris’s coma emergence.

For Chris, coma emergence did happen.  Chris did wake to tell the story of what happened to her. Yet as she has no memory of that night, of the next month, it is from her Mom that we learn what happened. Her Mom describes spending that “whole night in the waiting room, just trying to figure what was happening. Everybody was there waiting .  Chris’s head was severely swollen.”

As with many who suffer severe trauma, Chris had other significant injuries.  But it was a closed-head injury that “they were worried about the most at the time. The broken bones could be taken care of after they got her stabilized from the head injury.”

Coma Emergence After a Severe Brain Injury Not Like Hollywood

 

Hollywood loves to use amnesia as a plot.  That creates so much misinformation about what coma is like when it persists, and what the survivor will be like when they awake.  Reality is the survivor will not suddenly get his or her memory back, especially not from a second blow to the brain. For Chris, her coma emergence was nothing like it is portrayed in the movies.

“It’s not one day they just wake up and their life continues” explained Chris’s Mom. “It’s a slow process. There are many stages to a coma and coma emergence. You don’t just wake up one day and things are great.”

The waiting was harder  because “the information, the hope, the support we needed, she needed from the doctors, wasn’t forthcoming.”

The hardest part is the that there is little evidence that they will awake, until it actually starts to happen. That can be weeks of nothingness.   For Chris’s family,  this was made worse because of the incompetence of an intern.  The intern thought he knew more than he did. Perhaps he was influenced by preconceptions about the moral issues of sustaining a life in a long term coma.  The intern took it upon himself nine days after her injury, to tell the family they should consider removing life support.

“He told me that it was the best thing for her if I would take her off life supports ” explained Chris’s Mom. ” He said she would never amount to anything, that she ‘would be in a nursing home for the rest of her life as a vegetable.’  The intern also said it would be best to let “her go peacefully than to spend the rest of her life like that.” The “know it all” intern had gone so far to arrange a chance for Chris’s friends to say good bye to her.

Fortunately, the family refused to believe and had faith in coma emergence. They demanded a meeting with the attending physician.  At the meeting, the family learned that the intern had given such advice on his own.

Explains her Mom:

I just remember it was about midnight.  The neurosurgeon was on the phone. He was livid. The intern didn’t have permission to talk to us. (The neurosurgeon) did not believe that was going to be her outcome.

The doctor told them:

Her injury is only nine days old. She’s young, she has her age working with her. Time will tell. It’s too early to make any kind of decisions.

Time is what she needed. The first sign of coma emergence was opening her eyes.  But this wasn’t the end, just the beginning.  At first, she had no comprehension. This first sign of coma emergence was at three weeks, but Chris was still going through the process of coma emergence for three additional months.

“I never gave up hope,” said Chris’s Mom.  “From the minute she opened her eyes, it was a constant working with her.  We talked to her, rubbed her legs, rubbed her feet, gave her different sensations to feel. We would give her things to smell, things to look at.”

A consistent challenge for a family after a coma is geography, because in most cases, the survivor is flown to a Level One Trauma Center, miles from the scene of the wreck.  After coma emergence,  what makes it even harder is that there are fewer brain injury rehabilitation centers, involving even more travel.  Chris was at three rehab facilities before she was allowed to go home.  The going home wasn’t a one step process but a transition.  Chris’s first returns home, were just weekends and while a cause for celebration, it just one more stage in the long road to recovery.

To read  Chris’s stories click here.

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Gordon Johnson

Attorney Gordon Johnson is one of the nations leading brain injury advocates. He is Past-Chair of the TBILG, a national group of more than 150 brain injury advocates. He has spoken at numerous brain injury seminars and is the author of some of the most read brain injury web pages on the internet.

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