Gifted Hands: The Ben Carson Story (21 page)

I know how I would feel if one of my own sons had a brain tumor. I'd feel as if I were out in the middle of the ocean sinking, pleading for somebody, anybody, to throw me a life preserver. There is a fear beyond words, beyond rational thought. Many of the parents I see come to Hopkins with that kind of despair.

Even now I'm not sure I've fully gotten over Jennifer's death. Every time a patient dies I'll probably carry an emotional scar just as people receive an emotional wound when a family member dies.

I moved beyond the depressive cloud by reminding myself that there are a lot of other people out there who need help, and it's unfair to them for me to dwell on these failures.

As I think of my own reaction, I also realize that whenever I operate and something happens that the patient doesn't do well, I feel a keen responsibility for the outcome. Probably all doctors who care deeply about their patients react that way. A few times I have tortured myself by thinking,
If I hadn't performed the surgery, it wouldn't have happened. Or if someone else had done it, perhaps the results would have been better
.

I also know I have to act rationally about these things. Often I find comfort in knowing that the patient would have died anyway and that we made a gallant attempt to save her or him. As I look back on my own history of surgery and the work we do at Hopkins, I remind myself that thousands would have died if we hadn't operated.

Some people cope with their failures easier than others. It's probably obvious from what I've told you about my need to achieve and be the best I can be that I don't handle failure well. I've said to Candy several times, “I guess the Lord knows that, so He keeps it from happening to me often.”

Despite my grief over Jennifer and the days it took for me to throw it off, I don't believe in remaining emotionally detached from patients. I work with and operate on human beings, all creatures of God, people in pain who need help. I don't know how I can work on a girl's brain—how I can have her life in my hands—and yet not become involved. I feel particularly strong attachments to children who seem so defenseless and who haven't had the chance to live a full life.

CHAPTER 16

Little Beth

B
eth Usher fell from a swing in 1985 and received a little bump, nothing anyone worried about then. Shortly afterward that little bump caused her first minor seizure—or so they thought. What else could have been the cause? Beth, born in 1979, had been a perfectly healthy child.

A seizure is a frightening thing, especially to parents who haven't seen one before. The medical people they contacted told them there was nothing to worry about. Beth didn't look sick, didn't act sick, and the doctors were comforting. “This can happen after a bump to the head,” they said. “The seizures will stop.”

The seizures didn't stop. A month later, Beth had a second one. Her parents started to worry. Their doctor put Beth on medication to stop the seizures, and her parents relaxed. Everything would be OK now. But a few days later, Beth had another convulsion. The medication didn't stop them. Despite good medical care, the attacks came with greater frequency.

Beth's dad, Brian Usher, was the assistant football coach at the University of Connecticut. Her mother, Kathy Usher, helped run the athletic department's fund-raising club. Brian and Kathy sought every kind of medical information, asking questions, talking to people on and off campus, determined to find some way to stop their daughter's seizures. No matter what they did, however, the seizures increased in frequency.

To her credit, Kathy Usher is a relentless researcher. One day at the library she read an article about the hemispherectomies we were doing at Johns Hopkins. That same day she phoned Dr. John Freeman. “I'd like more information about the hemispherectomies,” she began. Within minutes she had poured out her sad tale about Beth.

John scheduled an appointment for them in July 1986, and they brought Beth to Baltimore. I met them that day, and we had a lengthy discussion about Beth. John and I examined her and reviewed her medical history.

At the time Beth was doing fairly well. The seizures were less frequent, down to as few as 10 a week. She was bright and vivacious, a beautiful little girl.

As I'd done with parents before, I spelled out the worst possible results, believing that when people know all the facts they can make a wiser choice.

When she had heard everything, Kathy Usher asked, “How can we go through with this? Beth seems to be getting better.”

John Freeman and I understood their reluctance and did not try to force a decision. It was a terrible decision, to think of putting their bright, happy child through a radical kind of surgery. Her life was at stake. Beth was still in good shape, which made her situation unusual. When a child is at the point of death, parents have less struggle in reaching a decision. They usually end up saying something like, “She may die. By doing nothing, we'll definitely lose her. At least with surgery, she has a chance.”

With Beth, however, the parents concluded, “She's doing too well. We'd better not do it.”

We did nothing to force or insist upon surgery.

The Ushers returned to Connecticut with hope, indecision, and anxiety. The weeks passed, and Beth's seizures gradually increased. As they grew more frequent, she began to lose the use of part of her body.

In October 1986 the family returned to Hopkins for further tests on Beth. I saw a serious deterioration in Beth's condition in just the three-month interval. Her speech now slurred. One of the things we wanted to know was whether Beth's speech control had transferred to her good hemisphere. We tried to find out by giving the diseased hemisphere an injection to put it to sleep. Unfortunately, the entire brain went to sleep, so we couldn't determine whether the surgery would take away Beth's ability to talk.

Since their interview in July, both John and I were convinced that a hemispherectomy was the only option for Beth. After watching her condition worsen, her parents were closer to saying, “Yes, try a hemispherectomy.”

At this point, John Freeman and I not only urged them to elect the surgery, but one of us said, “The sooner the better for Beth.”

The poor Ushers didn't know what to do—and I understood their dilemma. At least they now had Beth alive, although she was obviously getting worse. If she came in for surgery and it was unsuccessful, she might end up in a coma, or be fully or partially paralyzed. Or she might die.

“Go home and think about this,” I suggested. “Be sure of what you want to do.”

“It'll soon be Thanksgiving,” John said. “Enjoy the time together. Let her have Christmas at home. But,” he added gently, “please, don't let it go on after that.”

Beth planned to be in a Christmas play at school, and the part meant everything to her. And then after faithfully practicing her part, while she was actually on the stage, she had a seizure. She was devastated. And so were the Ushers.

That day the family decided to go through with the hemispherectomy.

In late January 1987 they brought Beth back to Johns Hopkins. The Ushers were still a little tense but said they'd decided to go through with the surgery. We went over everything that would happen. I again explained all the risks—how she might die or be paralyzed. Watching their faces, I realized they were having a struggle to face the surgery and the possible loss of their daughter. My heart went out to them.

“We have to agree,” Brian Usher said at last. “We know it's her only chance.”

And so a date was set. As scheduled, Beth was wheeled to an operating room and prepared for surgery. Her parents waited, hoping and praying.

The surgery went well with no complications. But Beth remained lethargic after the operation and hard to wake up. That reaction disturbed me; that night I called for a CT scan. It showed that her brain stem was swollen, which is not abnormal, and I tried to reassure her parents, “She'll probably get better over the course of a few days once the swelling goes down.”

Even as I tried to comfort the Ushers, I could see from the look on their faces they didn't believe what I was saying. I couldn't blame them for thinking I was offering the old comfort routine. Had they known me better, they would have realized that I don't take that approach. I honestly expected Beth to improve.

Kathy and Brian Usher, however, were already starting to punish themselves for allowing their child to go through this drastic surgical procedure. They had reached the stage of second-guessing where they asked each other, “What if …?”

They tortured themselves by going back to the day of Beth's accident and said, “If I'd have been right there with her …”

“If we hadn't allowed her to play on the swing …”

“If we hadn't agreed to this surgery, maybe she would have deteriorated, and maybe she would have died, but we still would have another year or two with her. Now we'll never have her back again.”

For hours they stood by her bed in the ICU, their eyes on her still face, watching the rise and fall of her little chest, the whir of the respirator that kept her breathing echoing in their ears.

“Beth. Beth, darling.”

Finally they left, their sad eyes caressing her face.

I felt terrible. They weren't saying anything derogatory to me, never once complaining or accusing. Yet over the years, most doctors learn to grasp unstated emotions. We also understand some of what hurting relatives go through. I was hurting inside for little Beth, and I couldn't do one thing more for her. All I could do was keep her vital signs steady and wait for her brain to heal.

Both John and I remained optimistic, and we tried to reassure them by saying, “She's going to come back. Beth's just like the kids who have severe head trauma and their brain stems swell. Sometimes they're out for days, even weeks or months, but they come back.”

They wanted to believe me, and I could see they were hanging on to every word of comfort Dr. Freeman or I or the nurses could give. Yet I still didn't think they believed us.

Despite the fact that John and I believed what we told Beth's parents, we couldn't be positive that Beth would wake up or that she wouldn't, finally, just slip away. We'd never been in that particular situation before. Yet we couldn't really account for Beth's condition in any other way except that the brain stem was traumatized.

The condition wasn't so severe that she couldn't bounce back. Yet the days passed, and Beth didn't bounce back. She stayed in a comatose condition for two weeks.

Daily I examined Beth and checked her records. And it became harder every day to walk into the room and face her parents. They looked at me with despair, no longer daring to hope. Time after time I had to say, “No change
yet
.” And I meant yet despite what was happening.

Everybody on the staff remained supportive, constantly offering encouragement to the Ushers. They also encouraged me as I began to grow concerned. Other doctors, even nurses, would come to me and say, “It's going to be all right, Ben.”

It's always inspiring when other people try to help. They knew me and, just from my silence, they figured out what troubled me. Despite their optimistic words, it was a tough time for all of us involved with Beth Usher.

Finally Beth improved slightly, enough that she didn't have to be on a respirator, but she remained comatose. We released her from ICU and sent her down to the regular floor.

The Ushers spent as much time with her as they possibly could, regularly talking to her or playing videos for her. Beth had especially liked the TV program
Mr. Rogers' Neighborhood
, so they played video tapes of Mr. Rogers. When he heard about Beth, Fred Rogers himself even came to visit Beth. He stood by her bed, touched her hand, talked to her, but her face showed no expression and she didn't wake up.

One night her dad was lying on a cot in the room, unable to sleep. It was nearly 2.00 in the morning.

“Daddy, my nose itches.”

“What?” he cried, jumping out of his cot.

“My nose itches.”

“Beth talked! Beth talked!” Brian Usher ran into the hallway, so excited that he didn't realize he was wearing only underpants. I doubt that anyone cared anyway. “Her nose itches!” he yelled at the nurse.

The medical staff raced after him to the room. Beth lay quietly, a smile on her face. “It does itch. A lot.”

Those words were the beginning of Beth's recovery. After that she started getting better every day.
*

E
ach of the hemispherectomies is a story in itself. For instance, I think of 13-year-old Denise Baca from New Mexico. Denise came to us in status epilepticus, meaning she was seizing constantly. Because she had been in constant seizure for two months, she had to be on a respirator. Unable to control her breathing because of the constant convulsions, Denise had undergone a tracheotomy. Now paralyzed on one side, she hadn't spoken for several months.

Denise had been a perfectly normal child a few years earlier. Her parents took her to all the New Mexico medical centers that would examine her, and then to other parts of the country. All experts concluded that her primary seizure focus was from the speech area (Brocha's area) and from the motor cortex, the two most important sections of her dominant hemisphere.