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.*
Each 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.
“There is nothing that can be done for her,” a doctor finally told her parents.
Those might have been the final words except that a family friend read one of the articles about Maranda Francisco. Immediately she called Denise’s parents. The mother, in turn, called Johns Hopkins.
“Bring Denise here, and we’ll evaluate her situation,” we said.
Transporting her from New Mexico to Baltimore was no easy task because Denise was on a respirator, which required a med-e-vac—a special transport system. But they made it.
After we evaluated Denise, controversy broke out here at Hopkins over whether to do a hemispherectomy. Several neurologists sincerely thought we would be crazy to attempt such an operation. They had good reasons for their opinions. Number one, Denise was too old. Number two, the seizures were coming from areas that made surgery risky, if not impossible. Number three, she was in terrible medical condition because of her seizures. Denise had aspirated, so she was having pulmonary problems as well.
One critic in particular predicted, “She’ll likely die on the table just from the medical problems, much less from a hemispherectomy.” He wasn’t trying to be difficult but voiced his opinion out of deep and sincere concern.
Doctors Freeman, Vining, and I didn’t agree. As the three people directly involved with all the hemispherectomies at Hopkins, we had had quite a bit of experience, and we were confident that we knew more about hemispherectomies than anyone else. We reasoned that, better than anyone else at Hopkins, we ought to know her chances. She would certainly die soon without surgery. Further, despite her other medical problems, she was still a viable candidate for a hemispherectomy. And, finally, we reasoned that we three ought to be the ones to determine who was a candidate.
We talked with our critic through several conferences, supporting our arguments with the evidence and experience from our background cases. We have a conference office where we invite more than just our inner circle. Over a period of days, we presented all the evidence we could and involved any of the staff at Hopkins whom we thought might have an interest in Denise’s condition.
Because of the controversy, we delayed doing the operation. Normally we would have gone ahead and done it, but we faced so much opposition we took this one slowly and carefully. Our opposition deserved a fair hearing, although we insisted upon the final word.
The neurologist-critic went so far as to write a letter to the chairman of neurosurgery, with copies to the chairman of surgery, the hospital president, and a few other people. He stated that, in his medical opinion, under no circumstances should Johns Hopkins allow this operation. He then carefully explained his reasons.
Perhaps it was inevitable that bad feelings developed over Denise’s case. When these issues become important it’s hard to keep personal feelings out of the picture. Because I believed in the critic’s sincerity and his concern for not involving Hopkins in any extraordinary and heroic ventures, I never took his arguments as personal indictments. While I was able to stay out of any personal controversy, a few of our team members and supportive friends did get heatedly involved.
Despite all arguments he brought forth, the three of us remained convinced that Denise’s only chance lay in having the surgery. We had not been forbidden to do the surgery, and no one higher up had taken any action on the objection, giving us the freedom to make our decision. Yet we hesitated, not wanting to make this a personal issue, feeling that if we did, the controversy could erupt and affect the morale of the entire hospital staff.
For days I asked God to help us resolve this problem. I pondered it as I drove back and forth to work. I prayed about it as I made my rounds, and when I knelt by my bed at night. Yet I couldn’t see how it would work out.
Then the issue resolved itself. Our critic left for a five-day overseas conference. While he was gone, we decided to do the operation. It seemed like a golden opportunity, and we wouldn’t have any loud outcries.
I explained to Mrs. Baca as I did to others. “If we don’t do anything, she’s going to die. If we do something, she may die, but at least we have a chance.”
“At least the operation gives her a fighting chance,” her mother said.
The parents were amenable and had been all along. They understood the issue perfectly. Denise was seizing so much and deteriorating so badly, it was becoming a race against time.
After the hemispherectomy Denise remained comatose for a few days, and then she awakened. She had stopped seizing. By the time she was ready to go home, she was starting to talk. Weeks later, Denise returned to school and has progressed nicely ever since.
I didn’t have any animosity toward the fellow who caused the opposition, because he strongly believed that surgery was the wrong thing to do. It was his prerogative to raise objections. By his objections, he thought he was looking out for the patient’s best interests as well as those of the institution.
The situation with Denise taught me two things. First, it made me feel that the good Lord won’t allow me to get into a situation He can’t get me out of. Second, it confirmed in me 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. I honestly never had any doubts about Denise’s surgery. In the months afterwards, although I didn’t know it at the time, I would do other and more controversial surgeries. Looking back, I believe that God had used the controversy over Denise to prepare me for the steps yet ahead.
* In 1988 Beth’s parents reported to me that she has continued to improve. She was number one in her math class.
Beth has a slight left limp. In common with other hemispherectomies, she has limited peripheral vision on one side because the visual cortex is bilateral-the one side controls vision to the other side. For some reason vision doesn’t seem to transfer. The limp has been there in every case.
CHAPTER 17
Three Special Children
The resident flicked off his penlight and straightened up from the bedside of Bo-Bo Valentine. “Don’t you think it’s time to give up on this little girl?” he asked, nodding toward the 4-year-old child.
It was early Monday morning, and I was making rounds. When I came to Bo-Bo, the house officer explained her situation. “Just about the only thing she has left is her pupillary response,” he said. (That meant that her pupils still responded to light.) The light he shone in her eyes told him that pressure had built inside her head. The doctors had put Bo-Bo in a barbiturate coma and given her hyperventilation but still couldn’t keep the pressures down.
Little Bo-Bo was another of the far-too-many children who run out into a street and are hit by a car. A Good Humor truck struck Bo-Bo. She’d lain in the ICU all weekend, comatose and with an intracranial pressure monitor in her skull. Her blood pressure gradually worsened, and she was losing what little function, purposeful movement, and response to stimuli she had.
Before answering the resident, I bent over Bo-Bo and lifted her eyelids. Her pupils were fixed and dilated. “I thought you told me the pupils were still working?” I said in astonishment.
“I did,” he protested. “They were working just before you came in.”
“You’re telling me this just happened? That her eyes just now dilated?”
“They must have!”
“Four plus emergency,” I called loudly but calmly. “We’ve got to do something right away!” I turned to the nurse standing behind me. “Call the operating room. We’re on our way.”
“Four plus emergency!” she called even louder and hurried down the corridor.
Although rare, a plus four—for dire emergency—galvanizes everyone into a
ction. The OR staff clears out a room and starts getting the instruments ready. They work with quiet efficiency, and they’re quick. No one argues and no one has time to explain.
Two residents grabbed Bo-Bo’s bed and half-ran down the hallway. Fortunately surgery hadn’t started on the scheduled patient, so we bumped the case.
On my way to the operating room I ran into another neurosurgeon — senior to me and a man I highly respect because of his work with trauma accidents. While the staff was setting up, I explained to him what had happened and what I was going to do.
“Don’t do it,” he said, as he walked away from me. “You’re wasting your time.”
His attitude amazed me, but I didn’t dwell on it. Bo-Bo Valentine was still alive. We had a chance—extremely small—but still a chance to save her life. I decided I would go ahead and do surgery anyway.
Bo-Bo was gently positioned on an “egg crate,” a soft, flexible pad covering the operating table, and was covered with a pale green sheet. Within minutes the nurses and anesthiologist had her ready for me to begin.
I did a craniectomy. First I opened her head and took off the front portion of her skull. The skull bone was put in a sterile solution. Then I opened up the covering of her brain—the dura. Between the two halves of the brain is an area called the falx. By splitting the falx, the two halves could communicate together and equalize the pressure between her hemispheres. Using cadaveric dura (dura from a dead person), I sewed it over her brain. This gave her brain room to swell, then heal, and still held everything inside her skull in place. Once I covered the area, I closed the scalp. The surgery took about two hours.
Bo-Bo remained comatose for the next few days. It is heartbreaking to watch parents sit by the bedside of a comatose child, and I felt for them. I could only give them hope; I couldn’t promise Bo-Bo’s recovery. One morning I stopped by her bed and noted that her pupils were starting to work a little bit. I recall thinking, Maybe something positive is starting to happen.
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