Gifted Hands: The Ben Carson Story (18 page)

“He's already here,” I'd answer and smile. “I'm Dr. Carson.”

I got a real kick out of watching them try to contain their expression of surprise. I didn't know how much of the surprise revolved around my being Black and how much because I was so young, probably a combination of the two.

Once we got past the introductions, I would sit down with them and start talking about their child's problem. By the time I finished with the consultation, they realized I knew what I was talking about. No one ever walked out on me.

One time when I was going to do a shunt on a little girl, her grandmother asked, “Dr. Carson, have you ever done one of these before?”

“No, not really,” I said with a straight face, “but I know how to read fairly well. I own a lot of medical books, and I take most of them with me into the operating room.”

She laughed self-consciously, aware of how silly her question had been.

“Actually,” I joked, “I've done a thousand at least. Sometimes 300 a week.” I said it with a smile, for I didn't want her to feel embarrassed.

She laughed then, realizing from the expression on my face and my tone of voice that I was still kidding her.

“Well,” she said, “I guess if you are who you are, and since you have this position, you must be all right.”

She didn't offend me. I knew that she passionately loved her granddaughter and wanted to be reassured that the child was in good hands. I assumed she was really saying, “You look like you haven't even gone to medical school yet.” After that kind of conversation took place a few times, I became so used to the responses that I used to look forward to the reactions.

I frequently got more of a negative response from Black patients, particularly the older ones. They couldn't believe that I was chief of pediatric neurosurgery. Or if I was, that I had earned my position. At first they eyed me suspiciously, wondering if somebody had given me my position as a token expression of integration. In that case, they assumed, I probably didn't really know what I was doing. Within minutes of our consultations, however, they relaxed and the smiles on their faces told me that I had their acceptance.

Oddly enough, White patients, even the ones in whom I could clearly detect bigotry, were often easier to deal with. I could see their minds working away, and they would ultimately reason,
This guy must be incredibly good to be in this position
.

I don't face that problem nowadays because most of the patients know who I am and what I look like before they get here. But it used to be very interesting. The problem is now the opposite because I'm known in the field and too many people say, “But we have to have Dr. Carson do the surgery. We just don't want anybody else.” Consequently, my operating schedule stays filled up for months in advance.

I have the prerogative of turning down patients and, of course, I must. It's necessary to say no at times because, naturally, I can't do all the surgeries. I also believe in asking other doctors if they'd be interested in doing them. I would have never learned the skills I have today if other surgeons had not been willing to let me take interesting and challenging cases.

Within a year of my appointment at Johns Hopkins I faced one of the most challenging surgeries of my life. The little girl's name was Maranda, and I had no way of knowing the influence she would have on my career. The results of her case also had a powerful effect on the medical profession's attitude toward a controversial surgical procedure.

CHAPTER 14

A Girl Named Maranda

Y
ours is the only hospital where we've received any real hope,” Terry Francisco said. She made an effort to keep her voice steady. “We've tried so many doctors and hospitals, and they end up telling us there's nothing they can do for our daughter. Please, please help us.”

It had been a long and frightening three years, and as the months had blurred into years, fear turned to despair. Desperate, her daughter nearing death, Mrs. Francisco called Dr. John Freeman here at Hopkins.

In 1985 when I first came into contact with brown-haired Maranda Francisco, I could never have guessed what an influence she would have on the direction of my career: on Maranda I would perform my first hemispherectomy.
*

A
lthough born normal, Maranda Francisco had her first grand mal seizure at 18 months, a convulsion characteristic of epilepsy that we sometimes call an electrical storm in the brain. Two weeks later Maranda suffered a second grand mal seizure, and her doctor put her on anticonvulsive medication.

By her fourth birthday, the seizures were becoming more frequent. They also changed, suddenly affecting only the right side of her body. She didn't lose consciousness; the seizures were focal (half a grand mal), originating in the left side of her brain and disrupting only the right side of her body. Each seizure left Maranda weak on her right side, sometimes unable to talk normally for as long as two hours. By the time I heard about her situation, Maranda was experiencing up to 100 seizures a day, as often as three minutes apart, making the right side of her body useless. A seizure began with trembling at the right corner of her mouth. Then the rest of the right side of her face trembled, followed by the shaking of her right arm and leg, until the whole right side of her body jerked out of control and then went slack.

“She couldn't eat,” her mother told us, and finally stopped letting her daughter try. The danger of choking was too great, so they started feeding her through a nasogastric tube. Although the seizures affected only her right side, Maranda was forgetting how to walk, talk, eat, and learn, and she needed constant medication. As Don Colburn of the Washington
Post
put it in a feature article, Maranda “lived her life in brief intervals between convulsions.” Only during sleep was she seizure-free. As the seizures worsened, Maranda's parents took her from specialist to specialist and received varying diagnoses. More than one physician mislabeled her a mentally retarded epileptic. Each time the family went to a new doctor or clinic with hope, they left filled with disappointment. They tried medicine, diets, and, on the advice of one doctor, a cup of strong coffee twice a day.

“My daughter has been on 35 different drugs at one time or another,” Terry said. “Often they'd give her so much she wouldn't recognize me.”

Yet Luis and Terry Francisco refused to give up on their only child. They asked questions. They read every piece of literature they could find. Luis Francisco managed a supermarket, so they were people with only a moderate income. Yet that didn't deter them. “If there is any place on earth to get help for Maranda, we're going to find it.”

In the winter of 1984 Maranda's parents finally learned the name of their daughter's condition. Dr. Thomas Reilly at the Children's Epilepsy Center at Children's Hospital in Denver, after consulting with another pediatric neurologist, suggested a possible explanation: Rasmussen's encephalitis, an extremely rare inflammation of the brain tissue. The disease progresses slowly but steadily.

If the diagnosis was correct, Reilley knew time was short. Rasmussen's progressively leads to permanent paralysis on one side of the body, mental retardation, and then death. Only brain surgery offered a possibility to save Maranda. In Denver, physicians placed the child in a barbituate coma for 17 hours in the hope that by stopping all brain activity the seizure activity might also stop. When they brought Maranda back out, immediately she started seizures again. This at least told them that the cause of her epilepsy wasn't owing to electrical misfiring in her brain but a progressive deterioration. Again, this offered more accumulated evidence of it being Rasmussen's.

Reilley arranged for Maranda's diagnosis at UCLA Medical Center, the nearest hospital with experience in treatment of Rasmussen's. A brain biopsy enabled them to reach a further confirmation of the diagnosis. The Franciscos then received the most severe blow. “It is inoperable,” doctors told them. “There is nothing we can do.”

That might have been the end of Maranda's story except for her tenacious parents. Terry Francisco checked on every lead she could find. As soon as she heard of anyone who was an expert in the field of seizures she made contact. When this person couldn't help her, she would say, “Do you know anyone else? Anyone who might be of some help to us?” Someone finally suggested she contact Dr. John Freeman at Johns Hopkins because of his well-earned reputation in the area of seizures. By phone Terry Francisco described everything to the pediatric chief of neurology. When she finished, she heard the most encouraging words she had received in months. “Maranda sounds like she might be a good candidate for a hemispherectomy,” Dr. Freeman said.

“You mean it? You think—you think you can help?” she asked, afraid to use a word like cure after so many disappointments.

“I think there's at least a good chance,” he said. “Send me her records, CT scans, and anything else you have.” John had been at Stanford University Hospital before hemispherectomy fell out of favor. Although he had not performed any himself, he knew of two successful hemispherectomies and was convinced that they were viable surgical options.

Hardly daring to hope, Maranda's mother copied all the records she had and mailed them that same day. When John Freeman received the material, he studied everything carefully, then came to see me. “Ben,” he said, “I'd like you to take a look at this.” He handed me the records, gave me a chance to study them thoroughly, and then said, “There is a procedure for a hemispherectomy that I know you've never heard of—”

“I've heard of it,” I said, “but I've certainly never done one.” I had heard of it only recently when, in looking up some other material, I flipped through a medical text and saw the material about hemispherectomy and skimmed it. The information didn't offer much optimism about such surgery. “I believe a hemispherectomy could save this child,” Dr. Freeman told me.

“You honestly have that much confidence in the procedure?”

“I do.” His eyes held mine. “Do you think you could do a hemispherectomy on this girl?” he asked. While I considered how to answer, John went on to explain the rationale behind his faith that such a surgical procedure could be done without terrible side effects.

“Sounds reasonable to me,” I answered, growing excited about having a challenge. However, I wasn't going to jump into some new kind of surgery without more information—and John Freeman wouldn't have wanted me to anyway. “Let me get hold of some of the literature and read up on it, and then I can give you a more informed answer.”

Beginning that day, I read articles and papers that detailed the problems causing the high complication rate and mortality. Then I did a lot of thinking about the procedure and examined Maranda's CT scans and records. Finally I was able to say, “John, I'm not sure, but I think it's possible. Let me consider it a little more.”

John and I talked and continued to study the records, and finally he phoned the Franciscos. Both of us talked with Mrs. Francisco and explained that we would consider doing a hemispherectomy. We made her no promises, and she understood that.

“You bring her for us to evaluate,” I said. “Only then can we give you a definite answer.”

I was eager to meet Maranda and happy when a few weeks later her parents brought her to Hopkins for further evaluation. I recall thinking how pretty she was and felt such a heaviness for the child. Maranda, then 4 years old, was from Denver, and she used to say, “I'm from Denverado.”

After extensive tests, a lot of conversation with John Freeman and a few others I consulted, I was finally ready to give them my decision. Maranda's dad had flown back home to work, so I sat down with Terry Francisco. “I'm willing to attempt a hemispherectomy,” I told her. “But I want you to know that I've never done one before. It's important that you understand—”

“Dr. Carson, anything—anything you can do. Everyone else has given up.”

“It's a dangerous operation. Maranda may well die in the operating room.” I said the words easily enough, but I also sensed how terrible they must have sounded to that mother. Yet I felt it was important to give her every negative fact. “She might have significant limitations, including severe brain damage.” I kept my voice calm, not wanting to frighten her, but I also didn't want to give her false hope.

Mrs. Francisco's eyes met mine. “And if we don't agree to the surgery, what happens to Maranda?”

“She'll get worse and die.”

“Then it's not much of a choice, is it? If there is a chance for her—even if a small chance—” The earnestness of her face showed clearly the emotion she had gone through in arriving at her decision. “Oh, yes, please operate.”

Once they had agreed to the surgery, Terry and Luis sat down with their daughter. Terry, using a doll, showed Maranda where I would be cutting into her head, and even drew lines across the doll. “You'll also end up with a really short haircut.”

Maranda giggled. She liked that idea.

Certain her daughter understood as much as she was capable of at 4 years of age, Terry said, “Honey, if you want anything special after the operation, let me know.”