Maranda had opened her eyes. She recognized her parents. She was talking, hearing, thinking, responding.
We had removed the left half of her brain, the dominant part that controls the speech area. Yet Maranda was talking! She was a little restless, uncomfortable on the narrow gurney, and stretched her right leg, moved her right arm—the side controlled by the half of her brain we had removed!
The news rippled down the corridor, and the whole staff, including ward clerks and aides, ran up to see with their own eyes.
“Unbelievable!”
“Isn’t that great?”
I even heard a woman say, “Praise the Lord!”
The success of the surgery was terribly important for Maranda and her family, but it didn’t occur to me that it was particularly newsworthy. While it was a breakthrough event, I saw it as inevitable. If I hadn’t been successful, in time another neurosurgeon would have. Yet it seemed as if everybody else thought it was a big item for the news media. Reporters started coming around, calling, wanting pictures and statements. Don Colburn from the Washington Post interviewed me and wrote a lengthy and remarkably accurate major article, chronicling the surgery and following the family afterward. The TV program Evening Magazine (called PM Magazine in some areas) did a two-part series on hemispherectomies.
Maranda developed an infection afterward, but we quickly cleared that up with antibiotics. She continued to improve and has done extraordinarily well. Since the surgery in August 1985, Maranda Francisco has had her one wish. She has had no more seizures. However, she does lack fine motor coordination of the fingers on her right hand and walks with a slight limp. But then, she walked with a mild limp before the operation. She’s taking tap dancing lessons now.
Maranda appeared on the Phil Donahue Show. The producers also wanted me on the show, but I turned down the invitation for several reasons. First, I’m concerned about the image I project. I don’t want to become a show-business personality or be known as the celebrity doctor. Second, I’m aware of the subtlety of being called on, acknowledged, and admired on the television circuit. The danger is that if you hear how wonderful you are often enough, you begin to believe it no matter how hard you try to resist it.
Third, although I’d done my written examination for certification as a neurosurgeon, I hadn’t yet taken my oral board exams. To do the oral examination, candidates sit before a board of neurosurgeons. For a full day they ask every conceivable kind of question. Common sense told me that they might not look too kindly on someone they considered a media hot-dog. I considered that I had more to lose than to gain by appearing on talk shows, so I turned it down.
Fourth, I didn’t want to stir up jealousies among other professionals and to have my peers say, “Oh, that’s the man who thinks he’s the greatest doctor in the world.” This has happened to other fine doctors through media exposure.
Because he was involved, I spoke with John Freeman about these public appearances. John is older, already a full professor, and a man I highly respect. “John,” I said, “there isn’t anything that anybody can do to you and it doesn’t matter what any jealous doctor might think about you. You’ve earned your reputation, and you’re already highly respected. So, in light of that, why don’t you go?”
John wasn’t excited about making a television appearance, but he understood my reasons. “All right, Ben,” he said. He appeared on the Phil Donahue Show and explained how the hemispherectomy worked.
Although that was my first encounter with the media, I’ve tended to shy away from certain types of media coverage on television, radio, and print. Each time I’m approached, I carefully look into the offer before deciding whether it’s worthwhile. “What’s the purpose of the interview?” That’s the main question I want answered. If the bottom line is to publicize me or to provide home entertainment, I tell them I don’t want to have anything to do with it.
Maranda manages well without the left half of her brain because of a phenomenon we call plasticity. We know that the two halves of the brain aren’t as rigidly-divided as we once thought. Although both have distinct functions, one side has the major responsibility for language and the other for artistic ability. But children’s brains have a considerable overlap. In plasticity, functions once governed by a set of cells in the brain are taken over by another set of cells. No one understands exactly how this works.
My theory, and several others in the field agree, is that when people are born they have undifferentiated cells that haven’t developed into what they are supposed to be. Or as I sometimes say, “They haven’t grown up yet.” If something happens to the already differentiated cells, these undefined cells still have the capacity to change and replace those that were destroyed and take over their function. As we age, these multipotential or totipotential cells differentiate more so that fewer of them remain that can change into anything else.
By the time a child reaches the age of 10 to 12, most of those potential cells have already done what they are going to do, and they no longer have the ability to switch functions to another area of the brain. That’s why plasticity only works in children.
However, I don’t look only at the age of the patient. I also consider the age of onset of the disease. For instance, because of her intractable seizures, I did a hemispherectomy on 21-year-old Christina Hutchins.
In Christina’s case, the onset of seizures started when she was 7 and had progressed slowly. I theorized—and it turned out to be correct—that since her brain was being slowly destroyed from the age of 7, chances were that many of her functions had been transferred to other areas during the process. Although she was older than any of my other patients, we went ahead with the hemispherectomy.
Christina is now back in school with a 3.5 grade point average.
Twenty-one of the 22 patients have been females. I can’t explain that fact. Theoretically, brain tumors don’t occur more often in females. I think it’s a fluke and that over the course of time it will even out.
Carol James, who is my physician’s assistant and my right-hand person, frequently teases me by saying, “It’s because women need only half of their brain to think as well as men. That’s why you can do this operation on so many women.”
I estimate that 95 percent of the children with hemispherectomies no longer have seizures. The other 5 percent have seizures only occasionally. More than 95 percent have improved intellectually after surgery because they are no longer being constantly bombarded with seizures and don’t have to take a lot of medication. I’d say that 100 percent of their parents are delighted. Of course, when the parents are delighted at the outcome, it makes us feel better too.
Hemispherectomy surgery is becoming more accepted now. Other hospitals are starting to do it. For instance, I know that by the end of 1988 surgeons at UCLA had done at least six. So far as I know, I have done more than anybody else who is actively practicing. (Dr. Rasmussen, still alive, isn’t practicing medicine anymore.)
One major reason for our high success rate at Hopkins is that we have a unique situation where we work extremely well together in pediatric neurology and neurosurgery. Contrary to what I observed a few times in Australia, in our situation we don’t need to depend upon a superstar. During my year down under, I noticed that some consultants weren’t interested in seeing anyone else succeed; consequently, it seemed that those under them didn’t always try their best.
I also praise the cooperative efforts in our pediatric intensive care unit. In fact, this togetherness permeates every aspect of our program here, including our office staff. We’re friends, we work well together, we’re dedicated to alleviating pain, and we’re interested in each other’s problems too.
We’re a team, and Ben Carson is only part of that team.
Of all the hemispherectomies I’ve done, only one patient died. Since then I’ve done approximately 30 others. The youngest child I’ve given a hemispherectomy was 3-month-old Keri Joyce. The surgery was fairly routine, but she hemorrhaged afterward b
ecause of a lack of platelets in her blood. That defect affected the residual good hemisphere. Once that problem was under control, she began to recover and has had no more seizures.
The most emotionally painful experience for me was Jennifer.*
We did our initial surgery on her when she was only 5 months old.
Jennifer was having terrible seizures, and her poor mother was devastated by it all. The seizures had started within days after birth.
After doing EEGs, CT scans, MRIs, and the usual workups, we discovered that most of the abnormal activities seemed to be coming from the back part of baby Jennifer’s right hemisphere. After studying everything carefully, I decided to take out only the back part.
The surgery seemed successful. She recovered quickly, and her seizure frequency diminished markedly. She started responding to our voices and growing more alert. For a while.
Then the seizures began again. On July 2, 1987, I took her into surgery and removed the rest of the right hemisphere. The operation went smoothly with no problems. Little Jennifer woke up after the operation and started moving her entire body.
The surgery with Jennifer had taken only eight hours, far less time than many others. But I think that because she was only 11 months old, the work took far more out of me than usual. When I left the operating room I was totally exhausted — and that’s not normal for me.
Shoftly after Jennifer’s surgery, I left for home, a drive of 35 minutes. Two miles before I reached the house, my beeper started going off. Although the cause for the emergency could have concerned half a dozen other cases, intuitively I knew that something had happened to Jennifer. “Oh, no,” I groaned, “not that child.”
Since I was so close, I hurried on home, rushed into the house, and called the hospital. The head nurse told me, “Shortly after you left, Jennifer arrested. They’re resuscitating her now.” Quickly explaining the emergency to Candy, I jumped back into my car, and made the 35-minute trip in 20 minutes.
The team was still resuscitating the infant when I got there. I joined them and we kept on, trying everything to get her back. God, please, please don’t let her die. Please.
After an hour and a half I looked at the nurse, and her eyes said what I already knew. “She’s not coming back,” I said.
It took a lot of willpower not to burst into tears over the loss of that child. Immediately I turned and hurried to the room where her parents waited. Their frightened eyes locked with mine. “I’m sorry — “ I said, and that’s as far as I got. For the first time in my adult life I began crying in public. I felt so bad for the parents and their terrible loss. They had gone through such a roller coaster of worry, faith, despair, optimism, hope, and grief in the 11 months of little Jennifer’s life.
“She was one of those children with such a fighting spirit,” I heard myself telling her parents. “Why didn’t she make it?” Our team had done a good job, but we sometimes face circumstances beyond medical control.
Staring at the grief etched on the faces of Jennifer’s parents was a little more than I could take. Jennifer was an only child. Her mother had significant health problems herself and was being treated at the National Institutes of Health in Bethesda. Between her own problems and that of her little girl, I wondered, Isn’t this pretty close to the trials of old Job in the Bible?
Both parents wept, and we tried to comfort each other. Dr. Patty Vining, one of the pediatric neurologists who had been with me during the operation, came into the room. She was as emotionally affected by the loss as I was. We were both trying to comfort the family while overcome by pain ourselves.
I can’t remember ever feeling such a desperate loss before. The pain hurt so deeply it seemed as if everybody in the world that I loved had died at one time.
The family was devastated but, to their credit, they were understanding. I admired their courage as they went on after Jennifer’s death. They had known the chances we were taking; they also knew that a hemispherectomy was the only possible way to save their daughter’s life. Both parents were quite intelligent and asked many questions. They wanted to go over the records, which we opened to them. On more than one occasion, they talked to the anesthesiologist. After I had met with them a few more times, they told me they were satisfied that we had done everything possible for their little girl.
We never discovered why Jennifer died. The operation was successful. Nothing in the autopsy showed that anything had gone wrong. As sometimes happens, the cause of her death remains a mystery.
Although I continued to function, for the next several days I lived under a cloud of depression and pain. Even today when I allow myself to dwell on the death of Jennifer, it still affects me, and I can feel tears reaching toward the surface.
As a surgeon, the hardest task I have is facing parents with bad news about their child. Since I’ve become a parent this is even harder because now I have some inkling of how parents feel when their child is sick. I guess that’s what makes it so hard. When the news is bad, there is nothing I can do or say that makes the situation better.
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.
* This is not her real name.
CHAPTER 16
Little Beth
Beth 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.”
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