Gifted Hands

by Ben Carson, M. D.

  BEN CARSON:

  The afternoon following the second brain-stem surgery, I was making my rounds and went in to see Craig. I couldn’t believe it—he was sitting up in bed. I stared at him several seconds and then, to cover my amazement, I said, “Move your right arm.”

  He moved it.

  “Now your left.”

  Again, quite normal reactions.

  I asked him to move his feet and anything else I could think of. Everything was normal. I couldn’t explain how he could be normal, but he was. Craig still had problems with swallowing, but everything else seemed OK.

  “I guess God had something to do with this,” I said.

  “I guess God had everything to do with it,” he answered.

  The next morning we were able to remove the breathing tube.

  “Going to empty me out?” Craig laughed. He was cracking jokes, having a fine time out of all of this.

  “You got your miracle, Craig,” I said.

  “I know.” His face glowed.

  I was at home with my family one evening about six weeks later when the phone rang. As soon as Susan recognized my voice, without bothering to identify herself, she shouted, “Dr. Carson! You won’t believe what just happened! Craig ate a whole plate of spaghetti and meatballs! He ate it all. And he swallowed everything! That was more than half an hour ago, and he’s feeling great.”

  We talked for some time, and it felt good to know that I had been a part of their lives during one of their special moments. It made me think of how we take simple things for granted — like the ability to swallow. Only people like Craig and Susan understand how wonderful this is.*

  * See Genesis, chapter 22.

  * What’s ahead for Craig? We expect Craig to get back to his preoperative state. That means that he will be highly functional. As long as I’ve known him, he has been neurologically impaired. He has tremors, and he still has problems with swallowing that resulted from the devastating neurological effects of the second surgery, in which he almost died.

  Unfortunately, Craig will probably have other tumors. But I think the odds of one recurring in the brain stem are small. He is currently working on an MA in pastoral counseling.

  CHAPTER 19

  Separating the Twins

  I wanted to kill them and myself as well,” Theresa Binder said. In January 1987, during her eighth month of pregnancy, the 20-year-old woman received the terrible news—she would give birth to Siamese twins.*

  “Oh, my God,” she cried, “this can’t be true! I’m not having twins! I’m having a sick, ugly monster!” She wept almost continuously for the next three days. In her pain this mother-to-be contemplated every possible way to avoid giving birth to the twins.

  Theresa first thought of overdosing on sleeping pills to kill the unborn twins and herself. “I just couldn’t go on and, for a while, it seemed like the only solution for them and for me.” But when she actually faced this answer, she couldn’t bring herself to swallow the pills. Some of her thoughts bordered on the bizarre, contemplating something, anything, just to have peace and to get herself out of this nightmare. She had considered running away, jumping out of the window of a tall building. No matter what she contemplated, she heard herself saying, “I just want to die.”

  On the fourth morning Theresa suddenly realized that she could kill herself—that would be bad enough—but that by her suicide she was murdering two other beings who had the right to live.

  Theresa Binder made peace with herself, knowing that she would have to face whatever happened. Now she could move beyond the tragedy and live with the results. Other parents had.

  Yet, only months before, Theresa and her 36-year-old husband, Josef, were overjoyed at the prospect of a baby. Early in her pregnancy her doctor informed them that she was carrying twins. “I was filled with joy,” Theresa recalled, “and thanked God for this wonderful double gift.”

  In anticipation, this couple in Ulm, West Germany, bought identical baby clothes, a double cradle, and a double baby carriage as they awaited the twins’ arrival.

  The twins, Patrick and Benjamin, were born by Cesarean section on February 2, 1987. Together they weighed a total of eight pounds fourteen ounces, and they were joined at the back of the head.

  Immediately after birth the twins were taken to the children’s hospital, and Theresa didn’t see them until three days later. When she finally saw her babies, Josef stood at her side, ready to catch her and carry her from the room if necessary.

  She stared at the joined infants in front of her. Words like monster fled from her, and Theresa saw only two tiny boys—her babies — and her heart melted. Tears streamed down her face. Her husband embraced her, and then they hugged their sons. “You are ours,” she said to the boys, “and I already love you.”

  Mother love never deserted Theresa Binder, although the days ahead were difficult—heartbreaking at times. Her protective care grew stronger.

  The parents had to learn how to hold the babies to be sure they were both well supported. Because their heads turned away from each other, Theresa had to sit them against a cushion and hold a bottle of milk in each hand to feed them. Although the twins shared no vital organs, they did share a section of the skull and skin tissue, as well as a major vein responsible for draining blood from the brain and returning it to the heart.

  Five weeks after their birth, the Binders took their sons home. “Not once did we ever not love them,” Josef said. “They were our sons.”

  Because of their being joined at the heads, the boys couldn’t learn to move like other infants, and yet, from the beginning, they acted like two individuals. One often slept as the other cried.

  The Binders lived with the hope that their chubby, blond sons would one day be separated. As they considered the future of Patrick and Benjamin, they learned that if the boys remained attached they would never sit, crawl, turn over, or walk. The two beautiful children would remain bedridden and relegated to lying on their backs for as long as they lived. Not much of a prospect for them.

  “I have lived with a dream that has kept me going,” Theresa told me when we first met. “A dream that somehow we would find doctors able to perform a miracle.”

  Night after night as Theresa went to bed, her last thoughts centered on cuddling and holding each of her sons separately, playing with them one at a time, and putting them in different cradles. Many of those nights she lay in bed, her eyes wet with tears, wondering if there would ever be a miracle for her sons. No one had successfully separated Siamese twins joined at the back of the cranium with both surviving.*

  “But I didn’t give up hope. I couldn’t. These were my sons, and they were the most important thing in my life,” she said. “I knew I would fight for their chance as long as I lived.”

  The babies’ physicians in West Germany contacted us at Johns Hopkins, asking if the pediatric surgical team could devise a plan to separate the Binder twins and give them their chance to live normal, separated lives.

  That’s when I came into this story.

  After studying the available information, I tentatively agreed to do the surgery, knowing it would be the riskiest and most demanding thing I had ever done. But I also knew that it would give the boys a chance—their only chance—to live normally. My making that decision was only one phase, because this would not be a one-doctor procedure. Doctor Mark Rogers, Director of Pediatric Intensive Care at Hopkins, coordinated the massive undertaking. We assembled seven pediatric anesthesiologists, five neurosurgeons, two cardiac surgeons, five plastic surgeons, and, just as important, dozens of nurses and technicians — seventy of us in all. We would also undergo five months of intensive study and training-preparation for this unique surgery.

  Craig Dufresne, Mark Rogers, David Nichols, and I planned to fly to West Germany in May 1987. During our four days there, Dufresne would insert inflatable silicone balloons under the scalps of the babies. This device would gradually stretch the skin so that enough tissue would be available to clo
se the huge surgical wounds following the separation.

  When it came to the surgery, I would do the actual separating, and then Donlin Long would work on one boy while I took the other. To make our chances for success better, I’d have the best qualified medical team at my side, all from Johns Hopkins, and they included Bruce Reitz, Director of Cardiac Surgery; Craig Dufresne, Assistant Professor of Plastic Surgery; David Nichols, Pediatric Anesthesiologist; and Donlin Long, chairman of Neurosurgery; with Mark Rogers as coordinator and spokesman.

  Since I had seen only X-rays of the children, I needed personally to assess their neurological ability, so I would be part of the team going to Germany to determine if the surgery was still feasible.

  Then two weeks before the four of us were scheduled to go, thieves broke into our house. Aside from things like electronic equipment, they also stole our safe, which they couldn’t get open. The small safe, not much larger than a shoebox, contained all our important documents and papers, including our passports.

  While realizing it would be difficult to replace the passport in two weeks, I didn’t know it Would be impossible. When I called the state department, the kind-but-efficient voice said, “I’m sorry, Dr. Carson, but nothing can be done in such a short period.”

  I then asked the police investigator, “What are the chances of getting back my papers, especially the passport?”

  “No chance,” he snorted. “You don’t ever get those kinds of things back. They trash them.”

  After hanging up, I prayed, “Lord, somehow You’ve got to get me a passport if You want me involved in this surgery.” I tried not to think about the passport. Because of my caseload I became so absorbed in other things, I put the matter out of my mind.

  Two days later the same policeman phoned my office. “You won’t believe this, but we have your papers. And your passport.”

  “Oh, I believe it,” I said.

  In an amazed tone, he told me that a detective had been rummaging through garbage. In a big plastic bag, he found a paper with my name on it and started digging further. Then he found all the other things, every single important stolen document. From that discovery they were able to bust a large crime ring in the Baltimore-Washington, D.C., area and to recover all of our other equipment, along with items stolen from other families.

  Our team spent the next five months in planning and working through every contingency we could envision. Part of the preparation required the rewiring of an entire section of a large operating room with emergency power ready in case of power failure. The OR had two of everything—anesthesia monitors, heart-lung machines, and tables that would lie side by side, but that we could move apart once I made the incision that separated the boys.

  At the end of the five-month period, everything was so organized that at times it felt as if we were planning a military operation. We even worked out where each team member would stand on the operating room floor. A 10-page, play-by-play book detailed each step of the operation. We endlessly discussed the five 3-hour dress rehearsals we’d had, using life-sized dolls attached at the head by Velcro.

  From the time we started discussing it, we all tried to keep in mind that we wouldn’t proceed with surgery unless we believed we had a good chance of separating the boys without damaging the neurological function of either baby.

  Neither Donlin Long nor I could be certain that parts of the critical brain tissue, such as the vision center, were wholly separate. Fortunately, as we had expected, the boys shared only a main drainage system, called the superior sagittal sinus, a critically important vein.

  Surgery on the 7-month-old twins began on Labor Day weekend, Saturday, September 5, 1987, at 7:15 a.m. We chose that day because the hospital itself would be less busy with plenty of staff available. (We don’t schedule elective surgery on weekends.)

  Mark Rogers had advised the parents to stay in their hotel room during the operation so they could get some rest. As I would have expected, they rested very little, and one of them was sitting next to the phone at all times. During the next 22 hours, one of the doctors called the Binders to update them at each stage of the ordeal.

  Heart surgeons Reitz and Cameron, after anesthetizing the twins, inserted hair-thin catheters in major veins and arteries to monitor the boys during the operation. With the children’s heads positioned to prevent them from sagging and causing undue pressure on the skulls after separation, we cut into the scalp and removed the bony tissue that held the two skulls, carefully preserving it so that we could use it later to reconstruct their skulls.

  Next, we opened the dura — the covering of the brain. This was quite complex because of a number of convolutions or tortuous areas in the dura and in the dural plains between their brains, as well as a large, abnormal artery running between the two brains which had to be sectioned.

  We had to complete all the sectioning of adhesions between the two brains before we made any attempt to separate the large venous sinuses. We isolated the top portion of the sinus and the bottom portion just below the torqula, the place where all the sinuses come together. Normally this ranges in size from that of a quarter to a half-dollar. Unfortunately it was much larger.

  When we cut below the area where the torqula should have ended, we encountered fierce bleeding. We controlled the bleeding by sewing muscle patches into the area, but it was frightening bleeding. We proceeded further down, and I recall saying aloud, “The torqula can’t extend much further.” Yet each time we met with the same scenario. Eventually we got all the way to the base of the skull where the spinal cord and the brain stem meet, and we were still having the same problem.

  We concluded that the torqula, instead of being the size of a half-dollar, covered the entirety of the backs of both of their heads and was a gigantic, highly pressurized, venous lake.

  This situation forced us to go into hypothermic arrest prematurely. In the planning sessions we had carefully timed it to take from three to five minutes to separate the vascular structures and the remaining time simultaneously reconstructing them in both infants.

  We had each child hooked up to a heart-lung bypass machine and pumped their blood through it to cool their temperatures from 95 degrees Fahrenheit to 68 degrees.

  Slowly we removed blood from the boys’ bodies. This deep degree of hypothermia brings metabolic functions to a near halt, and allowed us to stop the heart and blood flow for approximately an hour without causing brain damage. We had to stop the blood flow long enough to construct separate veins. During this time the Binder twins remained in a state similar to suspended animation.

  We had figured that after an hour the tissues’ demand for nourishment supplied by the blood would cause irreparable tissue damage. This meant that once we had lowered the boys’ body temperatures, we had to work quickly. (Interestingly, this technique can only be used in infants under 18 months when the brain is still developing and is flexible enough to recover from such a shock.)

  Just before 11:30 p.m., 20 minutes after we started lowering their body temperatures, came the critical moment. With the skulls already open, I prepared to sever the thin blue main vein in the back of the twins’ heads that carried blood out of the brain. It was the last link remaining between the little boys. That completed, we pulled the hinged table apart, and Long had one boy and I had the other. For the first time in their young lives, Patrick and Benjamin were living apart from each other.

  Although free, the twins immediately faced a potentially deadly obstacle. Before we could restore the blood flow, working as two units, both Long and I would have to fashion a new sagittal vein from the pieces of pericardium (the covering of the heart) removed earlier.

  Someone started the big timer on the wall. We had one hour to complete our work and to restart the blood flow. We were racing against time, but I said to the nursing staff, “Please don’t tell me what time it is or how much time we have left.” We didn’t want to know; we didn’t need the extra pressure of someone saying “You’ve only got 17 minutes left.�
�� We were working as fast as we could.

  I had instructed them, “When the hour is up, just turn the pumps back on. If they bleed to death then they’ll have to bleed to death, but we’ll know we did the best we could.” Not that I felt so heartless, but I didn’t want to take the chance of brain damage. Fortunately both Long and I were used to working under pressure, and we stayed at it, not letting our attention waver.

  It was an eerie experience, starting the surgery, because their bodies were so cold it was like working on a cadaver. In one sense the twins were dead. Momentarily I wondered if they would ever live again.

  In the planning sessions I had anticipated that it would take about three to five minutes to cut through the sinuses. Then we would spend the remaining 50 – 55 minutes reconstructing the sinuses before we could turn the blood back on.

  “Oh, no,” I mumbled under my breath—I had hit a snag. I would need more time than I had planned to reconstruct the huge torqula on my twin. The torqula is the dreaded area for neurosurgeons because the blood rushes through that area under such pressure that a hole in the torqula the size of a pencil would cause a baby to bleed to death in less than a minute.

  After hypothermic arrest it took 20 minutes to separate all of the vascular tissue, which meant we had used at least three times as much time as we had planned.

  We hadn’t been able to predetermine this situation because the pressure in this vascular lake was so high that it washed out the dye during the angiogram.

  By using 20 minutes to separate the vessels, this gave us only 40 minutes to complete our work. Fortunately the cardiovascular surgeons had been looking over our shoulders and observing the configuration of the sinuses as I was cutting through them. From pericardium they cut pieces to exactly the right diameter and shape.

  Although they were estimating, these two men were so skillful that when they handed the pericardium to Long and me, all of the pieces fitted perfectly. We were able to sew them into place along the affected areas.