CHAPTER 20
The Rest of Their Story
I
f 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.
O
nce 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 postoperative 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.
Do'stlaringiz bilan baham: |