Gray Matter

by Kilpatrick, Joel;Levy,David

  A hole was drilled and a tube placed into Annette’s brain to drain the fluid that was building up pressure. Annette went into emergency surgery at five in the morning to have the bone in the back of her skull removed. We hoped that it would give the cerebellum room to swell. I expected Annette to wake up once the bone was off and the pressure relieved. She did not. Later that day, Annette was still not responsive. A fresh MRI showed that there was such swelling that the hindbrain was pushing up into the main brain, a condition called upward herniation. Then I saw something I didn’t want to see: the brain stem appeared to be affected. My heart sank. I knew that it would be awhile before Annette could wake up—if she would wake up. She might remain in a vegetative state for the rest of her life. There was nothing we could do but wait and see what her little body did next.

  Several days went by and Annette showed no signs of neurological activity. She did not wake up and did not move. I visited with the family and discussed the gravity of the situation. They were looking to me for guidance, but I did not know what to do. I felt humbled by the events and could only shake my head in frustration, at a loss for what to suggest. We couldn’t keep the breathing tube in for more than a few weeks. If her parents wanted to assure her long-term survival, we would have to do a tracheostomy—creating a more permanent breathing hole in her windpipe below the vocal cords. This would assure that she would survive, even if she was vegetative.

  Our options were dwindling, and Annette was not showing any sign of getting better.

  Annette’s parents seemed stunned. They had known it was a serious procedure, but parents are never truly prepared to see their child in a coma, unsure if he or she will live or die. None of us had expected this. I prayed with her parents every time we met, but every day brought the same disappointment. Nothing was happening.

  Though I got the impression that faith had been a small part of their lives, one day I saw Annette’s father reading a Bible in Annette’s room. Then word got around about Annette, and people from all over the area came to pray for her, flowing in and out of the room like lifeblood. I could see the positive effect this was having on her parents. They seemed grateful and almost mystified by the show of love and support, often offered by people they had never laid eyes on. A community they didn’t know they belonged to was gathering around them in their time of need.

  Annette’s mother informed me that Annette’s name had been put on nationwide Web-based prayer chains; thousands of people were being asked to pray for Annette and for me. That stung a bit. I was still defensive about my reputation—having my name on a nationwide prayer chain for a bleed after surgery was not good for my ego, but I quickly swallowed my pride: I had invited prayer into the process, after all. This wasn’t about me; it was about Annette.

  But the stress began to take its toll. Annette’s mother began having early contractions and had to be confined to a wheelchair so she wouldn’t go into early labor. She could stand for only a few moments at a time. Every time I saw her, from the time of the surgery on, she was in the wheelchair, often crying and saying she felt helpless at a time when her daughter needed her most.

  Days went by. Despite all our prayers and all that medical science could offer her, Annette was not improving. We could not keep her on a temporary breathing tube much longer. Her parents needed to decide whether to do the tracheostomy and assure her survival on the breathing machine or to pull the tube, taking her off the machine, and see whether she would survive. They were considering both options very seriously. Given the bleak outlook for her and the debilitated state that might await her, I reasoned in my own mind that maybe God had given the family the twins at this particular time to partially offset the loss of Annette. The need to make a decision about inserting a permanent breathing tube became urgent.

  Annette’s mother, who had remained at her bedside day and night grieving over her firstborn, began having serious contractions. I arrived at work one morning to find that she had been admitted to the hospital. Doctors were trying to stop her premature labor, which they believed had been caused by the agony of watching Annette slowly die. It was too early to deliver the twins—their lungs were far from developed and the babies might not survive. Now all three lives were in medical danger.

  I retreated into the hallway feeling gutted and hollow. We had all been on such high alert since Annette’s surgery that I didn’t think I could take any more bad news. I was punch-drunk after two weeks of attending Annette, and this blow put me against the ropes. Where was God in all this? Why did things continue to get worse despite all our prayers? When I got home, I collapsed facedown on the carpet of my living room floor.

  “God!” I cried. “What are you doing? Haven’t they suffered enough? Annette is in a coma because of my procedure, even though we prayed constantly before and after. People all over the United States are praying for Annette, and yet things are getting worse. I have done the best work I know how to do, but now this family is facing the possibility of three dead or debilitated children. Why haven’t you done something? Don’t you see what is happening? Where are you?”

  I was worn out and angry with God, who seemed uncaring and distant. I wanted to see his power and love manifested in this situation, and it wasn’t happening. I went to bed with resentment in my heart. That night I had a particularly poignant dream: The scene was a courtroom, and I was the prosecuting attorney. God was the Judge. I was standing and pointing an accusing finger at him, demanding, “Why?” Then the back doors to the courtroom opened, and Annette walked up and took the witness stand. She said only one sentence. I couldn’t hear what she said, but the Judge was smiling, and I knew the case was over. I dropped my accusing finger and felt ashamed. One sentence had changed everything. Then the dream ended.

  I woke up knowing that my accusing tone toward God was unjustified. In Annette’s situation, as with every situation, I was missing information. It seemed so obvious to me now, so practical. I had been working without all the facts. Only God has a comprehensive view, and he is trustworthy and good. As I readied for work, I made an important decision. Though I could see no good in the situation, I could still declare that God is good. I could choose to affirm what I could not see and did not feel. I began to declare, “If I know one thing, I know that God is good.” My words had the power to change my feelings: I felt more courageous and confident.

  I also realized that at least some of my anger and self-pity had been in response to a bruised ego. I was angry that my long and difficult procedure had caused harm rather than good, and frustration that I could not answer Annette’s family’s questions about whether she would survive left me feeling inadequate. My initial response had been to blame God for the situation, which also reflected poorly on me. Now I verbally gave my reputation and the situation to God, no matter what happened. He was ultimately in charge of Annette’s life—and mine.

  The next time I went to the hospital, I knew I needed to change the atmosphere in Annette’s room. Anger with God is not a small problem in the pediatric ICU, one of the most depressing places on the planet. As children struggle for life, attached to tubes and machines, we naturally ask, “Why?” We rarely receive an answer that satisfies. Many have lost their faith in the pediatric ICU, and I could sense among Annette’s family a growing doubt that God was good. As each day passed with no sign of hope, we were all asking ourselves why God would let this happen to an innocent child.

  “I was hoping that things would have changed by now,” I said to them honestly as we all stood near Annette’s bed, where she lay motionless and silent but for the rasping of the ventilator. It seemed altogether possible that Annette would either die or wither up, having to be turned from side to side for the rest of her life, but I kept these thoughts to myself.

  “The fact that I don’t know what to do is embarrassing to me, because I am supposed to know,” I said. “But I know one thing. I know that God is good no matter what we see in this room. I have decided that, no matter which path we take
medically with Annette, we should keep showing up and continue to declare that God is good. We will cry together and laugh together and make decisions together. And we will declare that he is good no matter what happens.”

  They nodded in agreement. In a crisis, it is possible, even noble, to lend others your faith. Theirs seemed to be deepening.

  “Let’s all gather around her and say together what we know to be true,” I said. They all moved closer to the bedside and, after a short pause, repeated the short phrases I spoke. “Even though I don’t understand why this is happening, . . . God, I declare that you are good. . . . You are good all the time, . . . even if I can’t see it or feel it. . . . You love Annette more than we do. . . . You have Annette’s best interests in mind.”

  When I said that God loved Annette more than we did, the words pierced my heart and I wept without shame as I heard Annette’s parents proclaiming that belief through their tears. Of course he does, I thought. Why didn’t I think of that sooner?

  “No matter what happens,” I continued to lead them, “or how long this goes on, . . . we will continue to show up. . . . We will continue to declare that you are good, . . . and we will praise you because you are worthy.”

  Though the little girl before us was wasting away, somehow it felt like a day of victory. The atmosphere in the room had changed. Doubt and blame were pushed back, and peace came in. We even laughed for the first time in two weeks. Instead of blaming God, we honored and declared his goodness even though we couldn’t see it. We had placed Annette in God’s hands. We knew that whatever happened, God was with us and with Annette. Whatever happened, it would be okay.

  I walked out of that room with a new goal: to keep proclaiming that God is good even when evidence does not seem to show it. I now saw this as an opportunity that I would be crazy to miss. It took no faith to claim that God is good when life is going well. But in these circumstances it took pure, childlike faith to believe that God is good. It reminded me of the faith Annette had in me when I called her over in my office. She didn’t hesitate one bit, but walked right up to me, believing my intentions toward her were only good. That was the kind of faith God was looking for in me, and in all of us. Without knowing it, Annette had taught me a lesson that was taking me through a trial that threatened her very life.

  After that meeting, Annette’s mother stopped having premature contractions. Her pregnancy stabilized. The family and I met again, and our peace remained. There were tears but also smiles in the room now. Sometimes we laughed together. Finally, after several more days of waiting, the family decided to take Annette’s breathing tube out and not to insert a permanent one in her trachea. If God wanted her to survive, she would survive without the machine. We met together one last time and decided to remove the ventilator the following day. As I left our meeting, I saw one set of grandparents sitting on a bench in front of the hospital, holding each other and crying. It had been a long journey for all of us, but it looked as if the journey was about to end.

  The next morning, with Annette’s parents present, we removed Annette’s breathing tube and ventilator. She now had no supplemental oxygen. We looked at her small, inert body and listened to the wicked-sounding stridor, the rasping sound that had developed due to weeks of having a plastic tube down her windpipe. I winced at the sound of it. We said nothing, but we knew what was ahead. Annette would slowly stop breathing. When she did, the family would be faced with a new challenge: to move on with their lives in the face of devastating loss. We watched in silence. Annette’s oxygen monitor beeped a warning. The level of oxygen in her blood was falling. She appeared to be struggling for breath.

  I turned to the nurse and told her to administer some medicines to make Annette more comfortable and help her breathe easier. She did, and her breathing became less laborious and raspy. At least she won’t have to struggle so much, I thought. Her mother watched her somberly but with a deep peace and resolve. The grandparents looked as if someone had torn out their hearts and thrown them on the floor. I left the family there and told the nurse to call me if anything happened. She knew what I meant.

  Back at my office I met with other patients, but Annette was constantly on my mind. I kept waiting to receive a call from the nurse with the bad news. The call never came. Instead, when I spoke to the nurse next, she told me that Annette’s oxygen levels had dipped only briefly, and then she had begun keeping them up without the machine.

  I had a scheduled meeting out of town, and when I returned to the office, I had a message from Annette’s pediatrician asking me to check on Annette. Her condition had changed. I rushed in to see the girl and her parents.

  “She’s slowly getting better,” said Annette’s father, cautiously hopeful. “She moves this arm and this leg a little, and she’s been looking around the room. She seems to be tracking me with her eyes.”

  I looked at Annette. Her eyes were open but not exactly comprehending. She had not deteriorated as I thought she would. She had regained consciousness and was clearly fighting for life. Now she needed our help.

  “She wants to live,” I said. “I think we should support her.”

  Her father nodded. This was exactly what he wanted to hear. We did three separate shunt procedures to reroute the fluid collecting in and around her brain. People from many churches and denominations continued to stream in to pray for Annette. Friends held a fund-raiser for the family to help defray the medical costs and living expenses while Annette’s father was away from his job. We all waited to see what Annette would do next.

  Over the next month, Annette slowly improved. It became apparent that she might not only survive but even regain some of her brain function. A physical therapist began working with her to get her limbs moving again. Although Annette did not speak for many months, it was obvious that her mind was sharp. She answered questions by pointing to flash cards. The perceptive little girl I had first met in my office had returned.

  Annette’s mother soon delivered healthy twins, a boy and a girl, just down the hall from Annette’s room. On Christmas Day it was decided that Annette was healthy enough to go home. Her parents took her back home with great celebration. She was introduced to her new brother and sister, and her brain function continued to improve. Three months after the surgery, she began to try to speak again. Six months after the surgery, she was learning to walk with a child-sized walker. One year later, she could walk without the walker for short periods.

  When I saw Annette again for a checkup, she was still a wonderfully trusting and sensitive girl, but her personality had changed somewhat after the surgery. She’d become more assertive, bolder. She was pushing herself to walk again. Her will to survive, which had kicked in after she was removed from the ventilator, was now pushing her to do even more.

  Annette’s parents had changed too. The crisis and pain had shown them their need for God. Seeing the outpouring of support from the Christian community, they went from coasting through life to having a faith that could withstand a storm. When I saw them for Annette’s checkups, we always spent time talking about what they were learning about God. It was as if someone had plugged them in and turned them on. Annette’s crisis, for all its hardship, had changed their lives. They looked at things differently, through spiritual eyes, and they knew that God was with them.

  Never again could I accuse God of being unfeeling or uncaring, because now I was certain I had no grounds to do so. I would never have all the information; only he does. My job is to work with as much skill as I can and declare that God is good in every circumstance. I might not like what he does or understand why he sometimes lets someone suffer or die—but that is his decision, not mine.

  And there would be more times, like this one, when I stand amazed and watch him pull a little child back from the brink of death.

  Chapter 10

  Snatched from Hell

  Charlotte was a medical professional who worked in a hospital across town and was training to be a doctor. But she was hiding a terrib
le secret: her husband, Alan—a massive, muscular man—was tormented by anger and rage. He drank too much and was physically abusive toward her, even in front of their daughter and son, both under three years old.

  Alan was a classic bully. Something was eating him up on the inside, and he took it out on those nearest him. He pushed Charlotte around when he felt like it. He told her she was unattractive. She suspected him of having multiple affairs. When their daughter had health problems, he arrived to her surgery drunk. On another occasion, after Charlotte herself was discharged from the hospital following a procedure, Alan yelled at Charlotte because he had to pick her up.

  Alan’s abuse had been at a critical stage for a year or more. Ashamed, Charlotte hid her bruises with clothing. She could not believe that she, a member of the medical community, was living life as a battered woman. Unable to bring herself to admit her secret to anyone, she hoped that somehow Alan would change for the better.

  One night, with Alan in a drunken rage, Charlotte tried to get him to leave the house because she feared for the children’s safety. He became more violent than usual. He took her by the hair and dragged her off the bed. Clumps of her hair fell from his fingers, and she knew she would have to wear a cap to work the next day to hide the damage. She grabbed the children, locked the door, and went to bed with an unprecedented headache.

  She woke up in the wee hours of the morning feeling as if she were dying. Her body felt “mushy,” she told me later, as if it were breaking down completely. She ran down the hall screaming, then concluded it was just an anxiety attack. She went back to bed with her two children.

  Alan was forced to move out a week later when Charlotte called his family and threatened to report him to the police if they didn’t intervene. The sick feeling and headaches did not go away but worsened, leaving Charlotte partially incapacitated. She could hardly get out of bed, let alone go to work. Her children would wake up and stare at her, wondering what was wrong with Mommy. A friend took her to the emergency room, but a CT scan failed to find anything. Her blood pressure was far too high, but nobody knew why. Charlotte was always careful not to mention the beatings to anyone, so the cause remained a mystery. They diagnosed her with ophthalmic migraines, gave her medicine, and sent her home.