Gifted Hands: The Ben Carson Story

As Carson prepares for the operation on Maranda, he reflects that previous uses of hemispherectomy results had so rarely resulted in “full functional recovery,” that most doctors do not consider them a viable approach. So, if the surgery on Maranda is successful and she recovers, it will be “groundbreaking” (156). Carson faces challenges from the beginning of the operation. The degree of brain inflammation that results in unexpected amounts of bleeding and the difficulty of separating brain tissue from blood vessels leads to a ten-hour operation when five hours had been anticipated. Removed from the ventilator, Maranda begins breathing on her own, but makes no purposeful movements or response when the nurse says her name. It is when they wheel Maranda from the operating room, her parents come from the waiting room, and her mother kisses Maranda that they realize they have succeeded, for Maranda not only opens her eyes, she speaks, even after having the part of her brain that controls speech removed.

Carson is not expecting the response of the news media, and turns down an appearance on the Phil Donahue Show, not only because he does not want to become a “celebrity doctor,” but also, because he does not want fame to go to his head, and when he takes his upcoming oral board exams, he does not want the board of neurosurgeons to think of him as a “media hotdog” (160, 161). Dr. Freeman makes appearances instead.

Carson explains that Maranda’s recovery is due to brain “plasticity,” which allows brain cells that have not yet assumed a function to take up the work of damaged cells that have a definite role. This typically only lasts until age ten or twelve, but a twenty-one-year-old patient Christina, whose brain had slowly undergone damage since age seven, did well after a hemispherectomy because, Carson theorizes, many of the functions of the damaged hemisphere had already transferred to other areas by the time of her surgery.

After explaining more facts about hemispherectomies, Carson relates the story of his only hemispherectomy patient who died. When Jennifer is five months and having seizures, Carson removes the back portion of her right hemisphere. Things are fine for a while, but then the seizures return, so six months later, in July 1987, Carson removes the rest of Jennifer’s right hemisphere. Before Carson has driven the thirty-five minutes home, his beeper goes off, and he learns that Jennifer has gone into cardiac arrest. He rushes back to the hospital, but the team is unable to save her. They never fully understand why she died. Carson reflects on his own pain as he tells of trying to comfort Jennifer’s parents and for several days following, concluding that he does not “believe in remaining emotionally detached from patients” (168).

Beth, born in 1979, was a healthy child until a fall from a swing in 1985. Whether related or not, seizures followed and were not stopped by medication. Beth’s mother contacts Johns Hopkins specifically to ask about a hemispherectomy for her daughter, and an appointment is scheduled for July 1986. Believing that their daughter is doing better, they decide not to proceed with the operation. When Beth’s improvement does not last, her parents bring her back to Johns Hopkins. Carson notices her slurred speech and other signs of deterioration, but Beth’s parents are still unsure. Dr. Freeman urges them to enjoy the holidays, but not to wait too long after that. When Beth has a seizure on the stage during the Christmas play she had wanted so badly to perform in, the family makes the decision to proceed with the surgery. The surgery takes place in January 1987, and although it goes well, Beth has a difficult time awakening after surgery. Her parents are distraught, second-guessing their decision, as Beth remains comatose for two weeks. Then, suddenly at 2 a.m. one morning, she says to her father, sleeping on a cot in her room, “Daddy, my nose itches” (174). Dashing into the hall in his underwear, her father yells to the nursing staff that Beth is talking. From that time, her recovery speeds up.

Next, Carson describes a thirteen-year-old hemispherectomy patient named Denise, who is experiencing constant seizures when he meets her. She is paralyzed on one side, and because she could no longer control her breathing, doctors performed a tracheotomy, but one doctor told her parents there was nothing more they could do for her. When a friend reads about Maranda and calls Denise’s mother, the mother calls Johns Hopkins, and Denise is brought to Baltimore by a med-e-vac. In Denise’s case, Carson faces strong opposition from some of his colleagues because they believe Denise is too old, the areas that are seizing would be difficult to operate on, and—the critics believe—she is not in good enough condition to survive the surgery. Carson admits that they have good reasons for their opinions. Nevertheless, Carson, Freeman, and their team do not agree, reasoning that if they do nothing, Denise will die. After the hemispherectomy, Denise awakens, begins to talk, and returns to school. Carson concludes that “when people know their capabilities, and they know their material (or job), it doesn’t matter who opposes them. Regardless of the reputation of the critics or their popularity, power, or how much they think they know, their opinions become irrelevant” (178–9).

Carson begins this chapter with the stories of two craniectomies, the first performed on four-year-old Bo-Bo. A Good Humor truck struck Bo-Bo, and after a weekend in the ICU, just as Carson begins to examine her, her pupils become fixed and dilated. He calls a “Four plus emergency” and heads for the operating room. Stopping to explain the situation to an older neurosurgeon, Carson is surprised to receive the advice “Don’t do it . . . You’re wasting your time” (181). Unfazed, Carson “does it” anyway, performing a craniectomy—removing a section of the skull to relieve pressure within the brain—splitting the falx, and attaching a piece of dura from a cadaver to give “her brain room to swell, then heal” (182). When she becomes responsive again, Carson restores the section of the skull he had removed, and at the six-week mark, Bo-Bo is a normal child again.

The second craniectomy Carson discusses, performed on ten-year-old “Charles,” also arouses opposition, this time from the child’s mother. Seeing Charles’s pupils become fixed and dilated, Carson sends his resident to seek permission for the surgery, and Charles’s mother refuses. Learning of the conversation, Carson goes to see Charles’s mother himself and tells her about Bo-Bo. When Charles’s mother realizes that the operation holds a chance for Charles, she assents and signs the consent. After the operation, as the team waits for Charles to come out of the post-operative coma, critics speak against the decision to operate. And yet, eight days after the surgery, Charles awakes, and soon after, begins talking.

Carson recalls a third case that he will never forget. Five-month-old Danielle was born with a tumor on her head that continued to grow. Friends had told Danielle’s mother to institutionalize her, but she refused. Reading an article about Carson in Ladies Home Journal, she calls Johns Hopkins, and—at their request—sends her daughter’s medical record. Working with plastic surgeon Dr. Craig Dufresne, an operation plan is made, and afterwards, two other doctors will take over with chemotherapy “to kill any remaining malignant cells” (186). After successful surgery, Danielle initially does well, but problems began to develop shortly in respiration, in her gastrointestinal tract, and with her kidneys. The team is unable to save her, and an autopsy reveals that her tumor had metastasized to her kidneys, lungs, and gastrointestinal tract. Carson speculates that operating earlier might have saved her, and reports that her family bears no ill will.

Carson presents another tumor case in this chapter. Craig has Von-Hippel-Lindau (VHL) disease, which causes the development of multiple brain tumors and tumors of the retina. It is inherited, and Craig’s father had it. The first onset was in 1974, when Craig was in high school and had his first tumor. By the time he was twenty-two, he had married his high school sweetheart, Susan, and undergone a number of surgeries on his brain, lungs, adrenal glands, and retinas; in between his treatments, he took college courses. Susan became a nurse and was hired at Johns Hopkins in the pediatric neurology department in 1984. Craig has trouble swallowing, and feeding himself takes a long time.

In 1986, Susan realizes that Craig has another tumor and asks Carson to take him as a patient. Carson agrees, and a CT scan reveals three tumors, which Carson removes. Another tumor develops, this time in the center of Craig’s brain, but surgery handles it. In 1988, however, a tumor arises in his brain stem, an area considered “inoperable.” Susan and Craig ask Carson to try, but he is overbooked and recommends another Johns Hopkins neurosurgeon, who considers how to approach the situation. In the meantime, however, Craig’s health deteriorates: his face becomes numb and he starts having severe headaches. In June 1988, he’s admitted to the emergency room, and Susan calls Carson, who feels he has to act, agreeing to rearrange his schedule to perform surgery on Craig. The operation is complex; Carson has to use a microscope to see where the blood vessels stop and the tumor begins. Carson cannot find the cyst he suspects, but his search causes extensive bleeding, and they end up closing the incision at 2:30 a.m. The next day, Craig is doing well, and Carson tells him and Susan that he suspects the tumor is in the pons, and he was too tired to address that after the lengthy operation the previous day. Despite only a 50–50 change of success, Craig wants the operation. Again, the surgery is extremely challenging, and Carson feels unsure, but he prays and, using a laser beam, he finally locates an abnormal growth and teases it out of Craig’s brainstem, working through a flatline. Carson includes some of Susan’s perspective in the chapter and then returns to his own. When Carson is making his rounds on the afternoon following the second surgery, he is amazed that Craig is awake and alert, moving both arms in response to commands. About six weeks later, Susan calls him one night at home to report that Craig “ate a whole plate of spaghetti and meatballs!” and was able to swallow it all (205).

When German citizen Theresa Binder learns at age twenty that she is pregnant with Siamese twin boys, she considers suicide, but manages to overcome her impulse. The twins are born by Cesarean section in February 1987 and are joined at the back of their heads. Meeting their sons when they are three-days old, Theresa and her husband love the babies, but given the way they are joined, it soon becomes apparent that they will not be able to move independently. Their parents dream that they might be separated, though twins joined at the back of the head had never both survived a separation attempt at that time. The babies’ pediatrician contacts Johns Hopkins to ask about separation, and Carson, after reviewing the information agrees to do the surgery, “knowing that it would be the riskiest and most demanding thing I had ever done,” but willing to try to give the boys their only chance for a normal life. Four team members plan to go to Germany to meet the boys, but as they are preparing, Carson’s house is burglarized, the small safe containing his passport is stolen, and it seems that he will not be able to travel. Though the police investigator assures Carson that there is no chance at all of getting his papers back, two days later, by a fluke, the papers and Carson’s passport are recovered.

After the trip, Carson and the seventy-member team spend “the next five months in planning” the operation. Note that this does not match the statement in the Introduction that Carson “had devised the plan for the operation” (10). They begin the surgery on Labor Day weekend 1987. Originally thinking that the place where all the sinuses joined, the torqula, would be about the size of a half-dollar, they discover that it “covered the entirety of the backs of both their heads”—throwing their plans into disarray (213). They can only put the boys into hypothermic arrest for an hour; they had planned for less time than necessary to separate the vascular structures, three to five minutes for a job that takes twenty. Sixteen hours and a quarter after the operation began, Carson severs the last link between the boys. The boys are separate, but there are only forty minutes left to reconstruct the area that had been joined. Finishing just in time, they restart the boys’ blood flow and hit the worst possible snag: the boys’ brains bleed profusely, and for a time, it looks as if there is not enough blood available. As the team members begin to offer their blood, the American Red Cross turns out to have the extra ten units needed. The boys are placed in comas using barbiturates to give their brains time to heal, and the plastic surgeons work on putting the boys’ scalps back together, having to leave some gaps on one twin.

The twins are kept in an artificial coma at the end of the twenty-two-hour surgery. Theresa is brought to tears when a hospital staff member asks her, “Which child would you like to see first?” (219). A press conference is pushed back to afternoon to allow the team a break, and at the beginning, a hospital staff member, Mark Rogers, states clearly that the process is not over. “The success in this operation is not just in separating the twins. Success is producing two normal children” (221). Rogers explains the surgery and then Carson takes questions. He tells the reporters, “The twins have a 50–50 chance” and emphasizes that they do not know the outcomes, such as whether the boys can see, yet (221). After ten days in a coma, the doctors lighten the barbiturate dose, and both boys begin moving, to the delight of the staff. When the boys are completely out of the coma, the staff is able to confirm that both boys can see, an outcome that was by no means guaranteed. The boys progress nicely until Patrick aspirates some food and goes into respiratory arrest. The team resuscitates him, but he is not the same—there has been some brain damage, and the extent is not clear. Due to the contract the twins’ parents have with a German magazine, Carson cannot speak about the twins’ progress after they left Johns Hopkins, other than to say that in 1989, they celebrated their second birthdays.