After two more days Bo-Bo started moving a little. Sometimes she stretched her legs or shifted her body as if trying to get more comfortable. Over the course of a week she grew alert and responsive. When it became apparent that she was going to recover, we took her back to surgery, and I replaced the portion of her skull that had been removed. Within six weeks Bo-Bo was, once again, a normal 4-year-old girl—vivacious, bouncy, and cute.
This is another instance when I’m glad I didn’t listen to a critic.
I’ve actually done one craniectomy since then. Again I encountered opposition.
In the summer of 1988, we had a similar situation except that Charles,* age 10, was in worse shape. He had been hit by a car.
When the head nurse told me that Charles’s pupils had become fixed and dilated, that meant we had to take action. The clinic was especially busy that day, so I sent the senior resident to explain to the mother that, in my judgment, we ought to take Charles to the operating room immediately. We would remove a portion of his brain as a last-ditch effort to save his life. “It may not work,” the resident told her, “but Dr. Carson thinks it’s worth a try.”
The poor mother was distraught and shocked. “Absolutely not,” she cried. “I can’t let you do it. You will not do that to my boy! Just let him die in peace. You’re not going to be playing around with my kid.”
“But this way we have a chance —”
“A chance? I want more than a chance.” She kept shaking her head. “Let him go.” Her response was reasonable. By then Charles wasn’t responding to anything.
Only three days earlier we had regretfully told her that Charles’s condition was so serious that he would probably not recover, and she should come to grips with the inevitable end. Then suddenly a man stood before her, urging her to give her consent to a radical procedure. The resident could give her no assurance that Charles would recover or even be better.
After the resident returned and repeated the conversation, I went to see Charles’s mother. I spent a long time explaining in detail that we weren’t going to cut the boy in pieces. She still hesitated.
“Let me tell you about a similar situation we had here,” I said. “She was a sweet little girl named Bo-Bo.” When I finished I added, “Look, I don’t know about this surgery. It may not work, but I don’t see that we can give up in a situation where we still have even a glimmer of hope. Maybe it’s the smallest chance of hope, but we can’t just throw it away, can we? The worst thing that could happen is that Charles dies anyway.”
Once she understood exactly what I would do, she said, “You mean there really is a chance? A possibility that Charles might live?”
“A chance, yes, if we do surgery. Without it, no chance whatsoever.”
“In that case,” she said, “of course I want you to try. I just didn’t want you cutting him up when it didn’t make any difference —”
Not defending ourselves that we don’t do such things, I again emphasized that this was the only chance we could offer her. She signed the consent form immediately. We rushed the boy off to the operating room.
As with Bo-Bo, it involved removing a portion of the skull, cutting between the two halves of the brain, covering the swollen brain with cadaveric dura, and sewing the scalp back up.
As expected, Charles remained comatose afterward, and for a week nothing changed. More than one staff member said something to me like, “The ball game’s over. We’re wasting our time.”
Someone presented Charles’s case in our neurosurgical grand rounds. Neurosurgery grand rounds is a weekly conference attended by all neurosurgeons and residents to discuss interesting cases. Previously scheduled for an important surgery, I couldn’t be present, but I was told what was said by several who had been in on the conference.
“What do you think?” the attending doctor asked one intern.
“Isn’t this going a little bit beyond the call of duty?”
Another one said quite firmly, “I think it was a foolish thing to do.”
Others agreed.
One of the attending neurosurgeons, familiar with the boy’s condition, stated, “These types of situations never result in anything good.”
Another said, “This patient has not yet recovered, and he’s not going to recover. In my opinion, it’s inappropriate to attempt a craniectomy.”
Would they have been so vocal if I had been present? I’m not sure, yet they were speaking from their own conviction. And since seven days had passed with no change, their skepticism was understandable.
Maybe I’m just stubborn, or maybe I inwardly knew the boy still had a fighting chance. At any rate, I wasn’t ready to give up.
On the eighth day a nurse noticed that Charles’s eyelids were fluttering. It was the story of Bo-Bo all over again. Soon Charles started to talk, and before a month ended, we sent him to rehab. He has made great strides ever since. In the long run, we believe he’s going to be fine.
Bo-Bo won’t have any seizures, but Charles may. His condition was more severe, he was older, and he didn’t recover as quickly as Bo-Bo. Six months after the event (when I last had contact with the family), Charles had still not fully recovered, although he is active, walking and talking, and is developing a dynamic personality. Most of all, Charles’s mother clearly is thankful to have her son alive.
Another case I don’t think I’ll ever forget involved Detroitborn Danielle. Five months old when I first saw her, she had been born with a tumor on her head that continued growing. By the time I saw Danielle, the tumor bulged out through the skull and was the same size as her head. The tumor had actually eroded the skin, and pus drained out of it.
Friends advised her mother, “Put your baby in an institution and let her die.”
“No!” she said. “This is my child. My own flesh and blood.”
Danielle’s mother was doing the herculean task of taking care of her. Two or three times each day she changed Danielle’s dressings, trying to keep the wounds clean.
Danielle’s mother called my office because she had read an article about me in the Ladies Home Journal in which it stated that I frequently did surgeries that nobody else would touch. She talked to my physician’s assistant, Carol James.
“Ben,” Carol reported later that day, “I think this one is worth looking into.”
After hearing the details, I agreed. “Have the mother send me the medical records and pictures.”
Less than a week later, I examined everything. I realized immediately that it was a dismal situation. The brain was abnormal, the tumor had spread all over the place, and we didn’t know how the skin could be closed.
I called my friend Craig Dufresne, a superb plastic surgeon, and together we tried to figure out a way that we could remove the tumor and close the skull again. We also consulted Dr. Peter Phillips, one of our pediatric neuro-oncologists who specializes in treating kids with brain tumors.
Together we finally devised a way that we would actually get the tumor out. Then Dr. Dufresne would swing up muscle/skin flaps from the back and try to cover the head with them. Once that had healed, Doctors Peter Phillips and Lewis Strauss would come up with a chemotherapy program to kill any remaining malignant cells.
We assumed it was going to be a tough case and would require a tremendous amount of time. We were right. The operation to remove the tumor and to sew in the muscle flaps took 19 hours. We had no concern about the time, only the results.
Dr. Dufresne and I tag-teamed the surgery. I needed almost half of the surgery hours to remove the tumor. Then Dufresne spent the next nine hours covering her skull with the muscular cutaneous skin flaps. He was able to get the skin closed over.
About halfway through the surgery, I said to Dufresne, “I think we’re going to come out of this with our socks on.”
He nodded, and I could tell he felt as confident as I did.
The surgery was successful. As we had anticipated, in the weeks following the removal of the tumor, Danielle had to go back to t
he operating room and have the flaps moved to take tension off certain areas and to improve blood circulation to the surgical site.
Initially, Danielle started to do well and responded like a normal infant. I could see the pleasure her parents took in the everyday motions of babyhood most parents can take for granted. Her tiny hand grasping one of their fingers. A little smile. Then Danielle turned the corner and started going in the wrong direction. First, she had a small respiratory problem, followed by gastrointestinal problems. After we cleared them up, her kidneys reacted. We didn’t know if these other problems were related to the tumor.
Doctors and nurses in the pediatric ICU worked around the clock trying to keep Danielle’s lungs and kidneys going. They were just as involved as we were.
Finally all that could be done had been done, and she died. We did an autopsy, and we found that the tumor had metastasized all over her lungs, kidneys, and gastrointestinal tract. Our surgery for the tumor in her head was a little too late. Had we gotten to her a month earlier, before things had metastasized, we might have been able to save her.
Danielle’s parents and grandparents had come from Michigan and stayed in Baltimore to be near her. During the weeks of waiting and hoping for her recovery they had been extremely dedicated, understanding, and encouraging to us in everything we tried. When she died, I marveled at their maturity.
“We want it to be clear that we don’t harbor any grudges over anything you folks did here at Hopkins,” Danielle’s parents said.
“We’ve just been incredibly thankful,” said the grandmother, “that you were willing to undertake a case that everyone else considered impossible anyway.”
Especially I remember the words of Danielle’s mother. In a voice that was barely audible, she choked back her own grief and said, “We know that you’re a man of God, and that the Lord has all these things in His hands. We also believe we’ve done everything humanly possible to save our daughter. Despite this outcome, we’ll always be grateful for everything that was done here.”
I share Danielle’s story because not all our cases are successful. I can count on my fingers the number of bad outcomes.
* For the sake of privacy I have changed his name.
CHAPTER 18
Craig and Susan
Twenty-five to thirty people had jammed themselves into Craig Warnick’s hospital room, and they were holding a prayer meeting when I walked in. All of them were taking turns asking God for a miracle when Craig went into surgery. Not only was it amazing to see so many people crowded into the room, but even more astonishing, they had all come to pray with and for Craig.
I stayed a few minutes and prayed too. As I was leaving, Craig’s wife, Susan, walked to the door with me. She gave me a warm smile. “Remember what your mother said.”
“I won’t forget,” I answered, only too aware of Mother’s words, because I had once quoted them to Susan: “Bennie, if you ask the Lord for something, believing He will do it, then, He will do it.”
“And you remember it too,” I said.
“I believe,” she said. “I really do.”
Even without her saying so, I could read her confidence in the outcome of surgery.
As I walked down the hallway I thought of Susan and Craig and all that transpired in their lives. They had already gone through so much. And it wasn’t anywhere near being over.
Susan Warnick is a nurse—and an excellent one—on our children’s neurosurgical floor. Her husband has a disease called Von Hippel-Lindau (VHL). Individuals with this rare disease develop multiple brain tumors as well as tumors of the retina. It’s a hereditary condition. Over a period of years, Craig’s father had developed four brain tumors.
Craig’s ordeal began in 1974 when he was a high school senior. He learned that he had developed a tumor. Few people knew of VHL and, consequently, none of the medical profession who examined Craig anticipated other tumors. I had not yet met Craig. Another neurosurgeon operated and took out the tumor.
As I continued walking down the corridor, I thought of what he had gone through the past 13 years. Then my thoughts turned toward Susan. In her own way, she had gone through as much as Craig. I admired her for being so dedicated in taking care of Craig and making sure that everything was done for him. God had sent him the perfect mate.
Susan once said that she and Craig knew from the beginning that they had a special, heaven-sent love. They met in high school when she was 14 and he was two years older. Neither ever considered anyone else as a lifetime partner. They both became Christians in high school through the ministry of Young Life. Since then they have grown in their faith and are active members of their church.
By the time Craig was 22, they had finally learned the name of his rare disease—including the likelihood of recurring tumors. And by then he had undergone lung surgery, adrenalectomy, two brain-tumor resections, and tumors of the retinas. Despite all the physical roadblocks he faced, Craig had gone on to college between his hospitalizations. After the first surgery, Craig had trouble with his balance and swallowing—both results of the tumor. And these two symptoms never totally left him.
In 1978 Craig started vomiting and developing headaches. Both symptoms persisted with alarming regularity. Before Craig went through tests again, both he and Susan knew he had developed another tumor. However, Craig’s doctor (the original physician) did not realize it was another tumor and, as the Warnicks related the story to me, the doctor dismissed their fears.
The tests, however, confirmed that the Warnicks had been correct. The doctor set up a second surgery. The night before surgery, the Baltimore neurosurgeon said to Craig’s mother, “I don’t think I can remove the tumor without crippling him.” While wanting to know the worst possible outcome, they were devastated, feeling he offered them little hope.
The last thing that same doctor said to Susan on the evening of April 19, 1978—the night before his second surgery—was, “Tomorrow after surgery he’ll be in intensive care. Right?” He started to walk away and then turned back and added, “We hope he makes it.” It was one of the few times when Susan struggled with doubt over Craig’s recovery.
Craig made it through the surgery, but he had a long list of complications including double vision and the inability to swallow. His lack of balance was so bad he could not even sit up. Craig was physically miserable, emotionally depressed, and ready to give up. But Susan wouldn’t give up, and she refused to allow him to stop fighting. “You are going to get well,” she said constantly.
A few months later, Craig was admitted to the Good Samaritan Rehabilitation Hospital. Because of a number of significant factors involved, it was a miracle for Craig to get admitted. For the next two years, Craig had some of the best physical therapy available. And he improved dramatically.
“Thank You, God,” Susan, Craig, and their families prayed, offering thanks to a loving God for every sign of progress. But for Susan and Craig, improvement was not enough. “Heavenly Father,” they prayed daily, “make Craig well.”
Craig had a bad time recovering and faced a variety of setbacks. No longer a husky young man, Craig lost 75 pounds— making him nothing but skin stretched over a nearly six-foot frame.
Craig continued to improve, but he still had a long way to go. He learned to feed himself. Mainly because of his trouble with swallowing, he needed an hour and a half for a meal. He couldn’t walk and had to be in a wheelchair. Yet during that recovery period, showing remarkable determination, he continued in college.
The faith of those two was remarkable, especially Susan’s. “He’s going to walk,” she told people. “Craig is going to walk again.”
After two years of physical therapy, with the aid of a cane, Craig walked down the aisle with Susan, and they were married on June 7, 1980. The Baltimore Sun wrote a big story about this loving relationship and how it had pulled Craig from the jaws of death.
Craig threw himself into his college courses and finally completed his work. He graduated in January 1981
and found a job with the Federal government, filling a handicap quota.
But it wasn’t all good news. In late 1981 Craig developed tumors in his adrenal glands. In surgery the glands were removed, and he is now on medication for the rest of his life.
Shortly afterward Susan met with Dr. Neil Miller, an opthamologist at Johns Hopkins, who told her, “At least you now have a name for the disease. It’s called Von Hippel-Lindau or VHL.” He smiled. “It’s named for the men who discovered it.” He handed Susan an article about the disease.
As she started to read, Dr. Miller told her that Von Hippel-Lindau disease strikes one person in 50,000. Characteristically, VHL causes tumors in the lung, kidneys, heart, spleen, liver, adrenal glands, and pancreas.
In that instant, Susan grasped the impact this disease would have on the rest of Craig’s life. She stopped reading, and her gaze met that of Dr. Miller’s. Both of them were teary-eyed.
She later said, “His crying did more to comfort me than anything he could have said. I was so impressed to discover that there were people in the medical profession who felt deeply for their patients. His crying openly made me feel he understood. And that he cared.”
Susan then knew the name and characteristics of the disease. That knowledge also helped her to know what they could expect in the future—more tumors. “This disease isn’t going to go away. This next surgery won’t be the end of it,” she said, more to herself than to Dr. Miller. “We are going to have to live with this for a lifetime, aren’t we?”
Tears again filled his eyes. He nodded as he said hoarsely, “At least you know what you’re dealing with now.”
Susan decided not to give Craig this information. Craig is quiet by nature, and at the time he was severely depressed. She thought that if he knew the bleakness of his future, this would only add to his heavy heart.
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