At one point, perhaps 45 minutes into the hour, I knew we were moving close to the deadline. Without looking around I sensed the tension level around me increasing, almost as if individuals were whispering to each other, “Are we going to finish in time?”
Long completed his baby first. I completed mine within seconds before the blood started to flow again. We were right on target.
A silence momentarily filled the operating room, and I was conscious only of the rhythmic humming of the heart-lung machine.
“It’s done,” somebody said behind me.
I nodded, exhaling deeply, suddenly aware that I’d been holding my breath during those last critical moments. The strain was telling on all of us, but we had refused to give in to it.
Once we restarted the infants’ hearts, we hit our second big obstacle, profuse bleeding from all the tiny blood vessels in the brain that had been severed during surgery.
Everything that could bleed did bleed. We spent the next three hours using everything known to the human mind to get the bleeding controlled. At one point we were certain we wouldn’t make it. Pint after pint of blood flowed through their bodies, soon exhausting the supply on hand.
We had expected the bleeding, because we had to thin their blood with an anticoagulant in order to use the heart-lung machine. When we restarted their hearts the blood was effectively anticoagulated, and we faced intense bleeding in the area of the wound.
Their traumatized brains began to swell dramatically — which actually helped to seal off some of the bleeding vessels — but we didn’t want it to cut off the blood supply.
The most harrowing moment came when we learned that the supply of blood might run out. Rogers called the hospital blood bank.
“I’m sorry, but we don’t have much blood on hand,” said the voice on the other end of the line. “We’ve checked and there’s no more anywhere in the city of Baltimore.”
“I’ll give mine if you need it,” someone said as soon as Mark Rogers reported.
Immediately six or eight people in the operating room volunteered on the spot to donate their blood, a noble gesture but one that wasn’t practical. Finally the Hopkins blood bank called the American Red Cross, and they came through with ten units—exactly what we needed.
By the time the operation was over, the twins had used 60 units of blood—several dozen times more than their normal blood volume. The extensive head wounds measured approximately 16 inches in circumference.
While this was going on, someone from the team was staying in touch with the parents, who had left their hotel and were now in the waiting room. We also had staff on hand making sure those of us on the team had food to eat during our infrequent breaks.
We had planned to fit the twins immediately with Dufresne’s creation of a titanium mesh covering mixed with a paste of crushed bone from the babies’ shared portion of the skull. Once in place, the babies’ skull bones would grow into and around the mesh, and it wouldn’t need removal.
First, however, we had to be able to get their scalps closed before their swelling brains came completely out of their skulls. We put the boys into a barbiturate coma to slow down the metabolic rate to the brain. Then Long and I moved back, and Dufresne and his plastic surgery team went into action, working furiously trying to get the scalp back together. Finally they got things pretty much together on one boy with a few gaps on the other.
Dufresne would have to wait for a later date to install the titanium plates.*
We also ran into the problem that we didn’t have enough scalp to cover both infants’ heads; we temporarily closed Benjamin’s with surgical mesh. Dufresne would plan a second operation to create a cosmetically acceptable skull if the infants continued to recover.
If the infants continued to recover.
* Siamese twins occur once in every 70,000 to 100,000 births; twins joined at the head occur only once in 2 to 2.5 million births. Siamese twins received their name because of the birthplace (Siam) of Chang and Eng (1811 - 1874) whom P.T. Barnum exhibited across America and Europe.
Most cranio pagus Siamese twins die at birth or shortly afterward. So far as we know, not more than 50 attempts had previously been made to separate such twins. Of those, less than ten operations have resulted in two fully normal children. Aside from the skill of the operating surgeons, the success depends largely on how much and what kind of tissue the babies share. Occipital cranio pugus twins (such as the Binders) had never before been separated with both surviving.
Other Siamese twins joined at the hip or chest had been done successfully. Even so, when any two children are born with their bodies together, an attempt to separate them is an extremely delicate operation with chances of survival normally no greater than fifty-fifty. The twins share certain biosystems and, if damaged, would result in both their deaths.
* On March 6, 1982, Alex Haller and a 21-member Johns Hopkins medical team had performed a successful separation of twin girls born to Carol and Charles Selvaggio of Salisbury, Massachusetts, in a ten-hour operation. Emily and Francesca Selvaggio were joined from the chest to the upper abdomen, sharing an umbilical cord, skin, muscle, and rib cartilage. Haller’s team had their major problem with intestinal obstructions.
* Benjamin and Patrick would have to make another 22 trips into the operating room for the complete closure of their scalps. While I did a few of the operations, Dufresne did most of them, including some fancy flaps to cover the back of Benjamin’s head.
CHAPTER 20
The Rest of Their Story
If they recover. In every phase of the surgery, this was the underlying question. If. Oh, God, I prayed silently again and again, let them live. Let them make it.
Even if they survived the surgery, weeks would lapse before we could fully assess their condition. The waiting would be a constant strain because we would be constantly looking for the first signs of normalcy, all the while fearing that we might detect signs of brain damage.
To give their severely traumatized brains a chance to recover without any lasting ill effect, we used the drug phenobarbital to put the babies into an artificial coma. Phenobarbital drastically reduced their brains’ metabolic activity. We hooked them up to life-support systems that controlled their blood flow and respiration. The brain swell was severe, but not worse than we had expected. We indirectly monitored the swelling by measuring changes in heart rate and blood pressure and by periodic CT scans which give a three-dimensional X-ray picture of the brain.
The surgery ended at 5:15 a.m. on Sunday morning. It had taken 22 hours. And the battle wasn’t over yet.
When our team emerged from surgery to the sound of the applause of other hospital staff members, Rogers went directly to Theresa Binder and, with a smile on his face, asked, “Which child would you like to see first?”
She opened her mouth to respond, and tears filled her eyes.
Once we set in motion the plan to separate the Binder twins, the public relations office at Johns Hopkins informed the media of what we were doing. This was a historic operation. Although we hadn’t known it, the waiting room and corridors were alive with reporters. Naturally, none of them got into the operating room. Heavy security in the hospital would have stopped them even if they had tried to get inside. Several of the local radio stations gave updates on the surgery every hour. Naturally, with this kind of coverage untold thousands of the general public suddenly became involved in this surgical phenomenon. Later, I learned that many of the people who followed the updates had stopped during the day and prayed for our success.
Once out of the operating room, exhaustion took over, and we wanted to collapse. In the minutes after surgery, I couldn’t think of answering anybody’s questions or talking about what we had done. Rogers delayed a press conference until later that afternoon, giving us a chance to rest and clean up a little. At 4:00 when I walked into the conference room the magnitude of this surgery hit me. The room was wall-to-wall reporters with cameras and microphones. It may seem strange,
but when one is doing a job—no matter what the job is—it’s hard to comprehend the importance of it.
That afternoon, only a few hours out of surgery, my thoughts centered on Patrick and Benjamin Binder. The media attention the historic surgery generated was one of the last things on my mind. In fact, I doubt that any of us were prepared for the response of reporters and the myriad questions they asked. We must have looked strange standing in front of the media people, with our wrinkled clothes and fatigue-filled faces. We were tired but elated. The first step had been a giant one, and we’d made it. But it was only the first step on a long road.
“The success in this operation is not just in separating the twins,” Mark Rogers said at the beginning of the news conference. “Success is producing two normal children.”
As Rogers answered questions, I kept thinking how grateful I felt to have been a part of this magnificent team. For five months we had been one unit, all specialists and all tackling the same problem together. The staff at the pediatric ICU and the consultants in the children’s center reacted spectacularly. They rallied behind us and spent countless hours without charge, working to make this operation successful.
I listened as Rogers explained the steps of the surgery and added, “It shook me that we were able to perform as a team at this level of complexity. We are capable of doing even better things than we believe we are, if we challenge each other to do it.”
Although some of the others responded to questions, as the chief spokesmen Mark Rogers and I answered most of them. When reporters asked me about the boys’ chances for survival, I told them, “The twins have a 50 – 50 chance. We had thought the whole procedure out well. Logically it ought to work, but I also know that when you do what hasn’t been done before unexpected things are bound to happen.”
One reporter raised the question about their vision, “Will they be able to see? Both of them?”
“At this point, we simply don’t know.”
“Why not?”
“Number one,” I said, “the twins are too young to tell us themselves!” I did get a laugh from some of them. “Number two,” I continued, “their neurological condition was impaired, and that would delay our ability to assess their visual capabilities. The boys were not yet capable of looking at things or following objects with their eyes.”
(The next day all over the world, headlines blared, TWINS BLIND FROM SURGERY. We never said that or implied any such statement. We said we couldn’t tell.)
“But will they survive?” asked a reporter.
“Can they live normal lives?” asked another.
“It’s all in God’s hands now,” I said. Besides believing that statement, I didn’t know what else to say. As I walked out of the crowded room, I realized I had said everything that needed to be said.
As pessimistic as I was about the eventual outcome of the surgery, I still felt a glow of pride in being able to work side by side with the best men and women in the medical field. And the end of the surgery wasn’t the end of our teamwork. The postoperative care was as spectacular as the surgery. Everything in the weeks following the surgery confirmed again our togetherness. It seemed as if everyone from ward clerks to orderlies to nurses had become personally involved in this historic event. We were a team—a wonderful, marvelous team.
Patrick and Benjamin Binder remained in a coma for ten days. This meant that for a week and a half nobody knew anything. Would they remain comatose? Would they wake up to start living a normal life? Be handicapped? We all waited. And we wondered. Probably most of us worried a little and prayed a lot.
We hadn’t done anything unusual by putting them into comas. We had put individuals in barbiturate comas for periods that long before. For instance, children with severe head trauma need the comas to keep their intracranial pressures down. We constantly checked the twins’ vital signs, we felt the skin flaps to see how tense they were. Initially they were quite tense, and then they started to soften—a good sign that said the swelling was lessening. Occasionally when the barbiturate concentration would decrease, and we would see a movement, we’d say, “Well, they can move.” At this point we needed every sign of hope.
“It’s all in God’s hands,” I’d say, and then remind myself, “That’s where it’s always been.”
For at least the next week, whenever I’d go off duty I expected someone to call me and say, “Dr. Carson! One of the twins has had a cardiac arrest. We’re resuscitating him now.” I couldn’t relax much at home either, because I just knew the phone would ring and I’d hear the terrible, dreaded message. It wasn’t that I didn’t trust God or our medical team. It’s just that we were in uncharted waters and, as doctors, knew that the complications were endless. I always expected the bad news; fortunately, it never came.
In the middle of the second week, we decided to lighten up on the coma.
“They’re moving,” I said a couple of hours later when I stopped by to check. “Look! He moved his left foot! See!”
“They’re moving!” someone beside me said. “They’re both going to make it!”
We were beside ourselves with joy, almost like new parents who must explore every inch of their new babies. Every movement from a yawn to the wiggling of toes became a cause of celebration throughout the hospital.
And then came the moment that brought tears to many of us.
That same day, as soon as the phenobarbital wore off, both boys opened their eyes and started looking around. “He can see! They can both see!” “He’s looking at me! See—see what happens when I move my hand.” We would have sounded crazy to anyone who didn’t know the five-month history of preparation, work, worry, and concern. But we felt exhilarated. In the days that followed I’d find myself silently asking, Is this real? Is this happening? I hadn’t expected them to survive for 24 hours, and they were progressing nicely every day. “God, thank You, thank You,” I heard myself say again and again. “I know You have had Your hand in this.”
We did have some post-operative emergencies but nothing that didn’t come under control quickly. The pediatric anesthesiologists run the ICU. The people who had invested a tremendous amount of their time in this operation were the same ones who had been taking care of them postoperatively, so they really stayed on top of the situation.
Then questions arose about their neurological ability. What would they be able to do? Could they learn to crawl? Walk? To perform normal activities?
Week by week Patrick and Benjamin started doing more and more things and interacting more responsively. Patrick in particular got to the point where he was playing with toys, rolling from one side to the other and doing well with his feet. One day, however, about three weeks before he went back to Germany, Patrick unfortunately aspirated (sucked) his food into his lungs. A nurse discovered him in bed in respiratory arrest. Her quick thinking enabled an emergency team to resuscitate him, but no one knew how long he had been without breathing. He was already blue. He wasn’t the same after that. Sadly, without saying it, we knew this meant some kind of brain damage, but we had no idea how extensive. The brain can’t tolerate more than a few seconds without oxygen. At the time the twins left Johns Hopkins, Patrick, despite his respiratory arrest, was making strides. Benjamin continued to do quite well, even though his responses were slower at first. He was soon doing the things Patrick was doing before he had his arrest, such as rolling from side to back.
Unfortunately, because of the parents’ contractural agreement with Bunte magazine, I can write nothing about the progress of the twins after they left Johns Hopkins. On February 2, 1989, I do know that two separated and much-loved twin boys celebrated their second birthdays.
CHAPTER 21
Family Affairs
Candy’s voice, near, urgent, called me from a deep sleep at 2:00 o’clock in the morning. “Ben! Ben! Wake up.”
I burrowed deeper into my pillow. It had been a tiring day. I’d spent the day—May 26, 1985—at our church, involved in an event for runners called Health
y Choices. We had invited people to run one kilometer, five, or ten. Other doctors and I gave quick physical examinations and personal health profiles while experts provided tips on healthier living and better running.
Candy, waiting out her final month of pregnancy, had walked in the One K. Now she nudged me and said, “I’m having contractions.”
I forced my eyes to crack open. “How far apart?”
“Two minutes.”
It only took a moment for that message to leap into my brain. “Get dressed,” I commanded as I leaped from the bed. We had a half-hour drive ahead of us to get her to Hopkins. Our first son, born in Australia, had come after eight hours of labor. We figured this one would arrive a little faster.
“The pains started just a few minutes ago,” she said, swinging her feet to the floor and pulling herself out of bed. Halfway across the room, Candy paused. “Ben, they’re coming more frequently.” Her voice was so matter-of-fact she could have been commenting on the weather.
I don’t recall what I answered. I was fairly calm, still methodically getting dressed.
“I think the baby’s coming,” Candy said. “Now.”
“You’re sure?” I jumped up, grabbing her shoulders and helping her back into bed. I could see that the head was starting to crown. She lay quietly and pushed. I felt perfectly fine and not particularly excited. Candy behaved as if she delivered a baby every other month. I recall being thankful for my experience in delivering babies, aware that they had all been brought into this world under better circumstances.
Within minutes I had caught the baby. “A boy,” I said. “Another boy.”
Candy tried to smile, and the contractions continued. I waited for the placenta. My mother was staying with us, and I yelled to her, “Mother, bring towels! Call 911!” Afterward I wondered if my voice sounded like it did with a four plus emergency.
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