Risking Their Lives
Baltimore to London to Singapore ...
I had no time to rest and recover after my twenty-hour journey. As soon
as I arrived at the airport, I was whisked through customs, ushered into
the backseat of a waiting Mercedes, and driven directly to Singapore's
new and prestigious Raffles Hospital for a lengthy introductory meeting
and then a light lunch with my surgical colleague hosts.
After these preliminaries, I was ready for my first appointment-the
long-anticipated encounter with our special patients. It promised to be
one of the most fascinating and unusual interviews of my life. I don't
recall what my fellow neurosurgeon Dr. Keith Goh said to me as the
entourage of physicians, nurses, and medical administrators rounded the
corner in that hospital corridor-but I will never forget my first sight
of Ladan and Laleh Bijani.
The young women waited to greet me in the hallway outside the suite of
rooms that had been converted into a small apartment. They had lived
there for a number of months while an army of medical doctors,
specialists, and technicians examined them and conducted test after test
after test. The Bijani twins wore the traditional Iranian attire of
their homeland-long skirts, long-sleeved tops, muted colors, nothing
over their faces, but a large scarflike cloth covering the thick, dark
brown hair on their heads. Their warm and welcoming smiles struck me
Dr. Goh, a short, dark-haired Asian in his forties, quickly introduced
me to the women. The Bijanis' English, which I'd been informed they had
learned since arriving in Singapore seven months before, was broken and
stilted but more than adequate for simple conversation.
After shaking hands with and greeting the first twin, I stepped around
to greet the other one-a semi-awkward little side step necessary because
Ladan and Laleh could not face me at the same time. Indeed, the
twenty-nine-year-old sisters were a true medical rarity: identical twins
conjoined at the head, their two skulls fused above and behind their
ears so that their faces turned permanently away from each other at
about a 130-degree angle.
The connection of their skulls held their heads nearly straight up and
down. But with their ears touching and their shoulders and arms
constantly rubbing, they were forced to lean their upper bodies toward
one another and drop their inside shoulders to simultaneously create
room to maneuver and maintain the balance necessary to move and stand
The result of a single fertilized egg that divides but never completely
separates in the womb, conjoined twins (meaning they are attached at
some point of their bodies) occur only once in every 200,000 births. All
but a few are stillborn or die shortly after birth. Live craniopagus
(from the Greek cranio, meaning "helmet," and pagus,
meaning "fixed") twins are attached at the head and are the rarest of
all-perhaps one in two million births. The odds of such twins living to
two years of age are much, much slimmer-which made Ladan and Laleh's
survival into adulthood a remarkable thing indeed.
Even more astounding is the fact that these young women had done far
more than survive. Adopted by a compassionate Iranian medical doctor
when their birth family couldn't care for them, Ladan and Laleh were
given every possible opportunity to adapt and live as normal a life as
possible. And adapt they did.
They attended elementary school with their peers. In time they grew,
graduated from secondary school, and went on to university, where they
studied journalism and pre-law. The two graduated from law school and
were now fully qualified attorneys-which had recently precipitated a
crisis resulting in added tensions between the sisters. Only Ladan
wished to pursue a legal career, while Laleh had decided she wanted to
go into journalism. Their physical bodies bound them together in a
mutually shared existence, even as their two distinct personalities and
now two very different life dreams-pulled them in different directions.
For years Ladan and Laleh had searched the world over for a neurosurgeon
who would agree to operate and give them at least a chance of achieving
their lifelong dream of pursuing two normal, individual, and
distinctively different lives. Expert after expert refused to consider
their request. Every doctor willing to examine their records told them
that surgery would be too risky, that at least one of them-and probably
both-would die. Their case was just too complex, they were too old, and
the odds of a positive outcome were too low.
But the Bijanis refused to give up. When they read that Dr. Goh and his
team had successfully separated eleven-month-old Nepalese craniopagus
twins a couple of years before, they contacted him. After studying their
medical records and concluding that a successful surgery just might be
possible, he contacted me to ask if I'd be willing to help.
I had consulted and worked long-distance with Keith Goh on the Nepalese
babies through the use of our virtual workstation at Johns Hopkins. I
had also served as one of the primary surgeons for the first successful
separation of occipital craniopagus twins (the Bender boys at Johns
Hopkins in 1987). Ten years later, at the Medical University of South
Africa, I was primary surgeon for the Zambian brothers Joseph and Luka
Banda during the first separation of Type 2 vertical craniopagus twins
in which both not only survived, but remained neurologically intact.
Because of all those experiences, Dr. Goh wanted me to work with him on
the surgery, and the Bijani twins themselves had also requested that I
join their case.
I had actually declined their invitation when I'd first been contacted
months before. The very fact that these young women had adapted so well
and had already survived to the age of twenty-nine seemed to me reason
enough to recommend against surgery. In an attempt to dissuade them, I
had suggested to Dr. Goh that he remind the Bijanis of the case of Chang
and Eng Bunker, the original "Siamese twins." Born in Siam (now
Thailand) back in 1811, these brothers achieved celebrity, traveling the
world as the headline attraction of P. T. Barnum's circus before
retiring from show business, purchasing adjacent properties in North
Carolina, and becoming successful farmers. They married sisters,
fathered a total of twenty-one children between them, and lived healthy
lives to the age of sixty-three.
If ever I'd heard of another set of conjoined twins who I thought
rivaled the Bunkers' adaptability and who just might match or exceed
their amazing longevity, it was these remarkable young women who had
already survived and accomplished so much. The idea of separating them
at the age of twenty-nine just didn't make sense, and after examining
their records and studying the initial CAT scans Dr. Goh had sent me, I
was convinced the risks were just too high.
Yet now, months later in Singapore, standing face-to-face with these two
determined, obviously bright, and outgoing young women-who just happened
to be attached at the head-I found myself incredibly impressed and
Ladan and Laleh smiled shyly and even giggled at the commotion of the
people who'd come with me to meet them. I was amazed by how at ease they
seemed to be with all the attention. Dr. Goh had told me the twins had
become quite the celebrities since their arrival in Singapore. Every
time they'd ventured outside the hospital-to eat, shop, or just
sightsee-the Bijanis had attracted media and crowds of curious
well-wishers who clamored for pictures and autographs or simply wanted
to shake their hands. So far, according to Dr. Goh, the young women
seemed to find the attention more amusing than troubling.
The crowd gathered in that hospital hallway that afternoon, however, was
logistically awkward, so the Bijanis invited me (along with Dr. Goh and
a couple of others) into their living quarters to continue our
conversation. As they led the way, I could see they had mobility down to
a science. I followed, watching with interest and marveling at the
smooth, almost subconscious choreography required just to turn and walk,
slip through a doorway, and then gracefully seat themselves on the short
couch that dominated a sitting room just inside the living area.
I sat in a chair directly across the room, a coffee table between us.
From there I would be able to lean a little left to talk with one sister
and then just tilt my head and lean a little right to speak to the
other. Not only did I want to be able to respect their individuality by
speaking to each of them separately and making eye contact as I did so,
but I wanted to be able to read the expressions on their faces and the
looks in their eyes as they answered my questions.
We made pleasant small talk for a short time-about their stay in
Singapore, the ease with which they had picked up conversational
English, and all the media attention they'd experienced. At that point I
lightheartedly "warned" them that all the attention they had received so
far would seem like a drop in the bucket compared to the media frenzy
that would result from a successful surgery. "The queen, the king, and
everyone else will want to meet you," I said. They laughed at the
prospect but didn't seemed at all troubled.
As we talked, I noted that Ladan was decidedly the more outgoing and
talkative of the two. Laleh seemed, if not exactly shy, at least more
reserved and pensive.
When the discussion moved on to the impending surgery, the twins became
a bit more somber. As they talked honestly about some of the
difficulties they had faced in life, I realized even the simplest and
most routine movements-from getting in and out of a car to bending over
and picking a pencil up off the floor or fixing a snack-required complex
choreography and complete cooperation between the two of them. Every
life choice-from what classes to take in school, to which friends to
spend time with, to when to go to the bathroom-was a committee decision
demanding unanimous consent.
But the longer I spent in their presence, the less I found myself trying
to imagine all of the challenges they had overcome. Instead, I tried to
picture how different things would be for them if a successful operation
were to free them to live separate lives. After twenty-nine years of
perpetual and involuntary attachment to another human being, the
abstract idea of privacy would be very appealing-but what would it
really feel like to be wholly alone for the first time in your life?
One of the primary reasons I had declined the Bijanis' case when I'd
first been approached was that I feared the psychological ramifications
of separating conjoined twins after twenty-nine years. What if
separation proved more emotionally damaging than remaining attached? My
thinking began to shift, however, as I learned more about their
situation, their conflicting aspirations, and their determination to
pursue the operation. I knew they had undergone extensive psychological
counseling in recent months, but still, I needed to hear their own
responses to my concerns about the formidable psychological adjustments
they would face if they were separated. So I asked them to tell me what
they thought about the issue.
They assured me that they knew a successful separation would not bring
an end to the many challenges they faced. They acknowledged that some of
their lifelong emotional bonds might be hard to sever. But again they
expressed their determination to press ahead with the operation. They
When I asked if I could feel their heads, they readily agreed. As I ran
my fingers over the top, side, and back of their skulls, I explained
that after many hours spent studying their CAT scans, I had a good idea
of what their brains looked like. Still, before surgery the next day, I
told them, "I want to get a sense of the junction of your skulls."
The examination only took a few seconds, but it was long enough to
remind me just how complex this surgery promised to be. It was one thing
to look at film on a lighted board or to hold a life-size plastic model
of their conjoined heads and try to visualize the challenge this surgery
would present. It was another thing entirely, however, to run my
fingertips through their hair, tracing the extent of the solid, bony
juncture of their two skulls. The attachment covered an area that was
almost half the size of a head-from above and in front of the ears on
the side of the head, then over the ears and down to almost the base of
their skulls in the back.
I knew that Dr. Goh had explained to them the various steps and
procedures involved in the surgery, but I wanted to know for myself that
they understood the risks. "I have to tell you," I said to them, "what I
believe you already know-that this will be an extremely complex and
risky surgery." To make certain they understood, I waited for their
translator to repeat what I said in Farsi. "Based on my experience and
my study of your case, and despite the excellent resources available to
your fine surgical team here at Raffle Hospital, I still think there is
at least a 50 percent chance this surgery could result in death or
serious brain damage for one or both of you. I need to make certain you
both understand that."
At Johns Hopkins my colleagues and I routinely perform some of the most
complex neurosurgical procedures in the world. Any operation with as
much as a 10 percent chance of mortality would be considered an
extraordinarily dangerous procedure-a sky-high risk. So a 50 percent
risk is truly stratospheric. I wanted to be sure that Ladan and Laleh
understood the stakes.
Both women assured me again that Dr. Goh had been very honest with them.
They understood the challenges. But most convincing for me was hearing
the emotion and conviction in their voices as they insisted, "We would
rather die than not pursue this if there is any chance we could be free
to live our own separate lives. Death would be better than continuing to
live like this!"
Because we put such a premium on life, it was startling to hear two
healthy, vivacious young women state such feelings in a straightforward
manner just hours before an operation. Most of us, even those of us who
deal with life-and-death issues every day, don't often stop and think
seriously about what quality of life means to us. But as we spoke, I had
a growing awareness that these women had thought long and hard about the
subject and that it would be extremely difficult for anyone not in their
situation to even begin to understand how they felt.
I had already heard from the Singaporean medical team, who had learned
it from one of the twins' caretakers, that the tension between the women
had escalated in recent months. Some arguments had even led to physical
altercations. I could only imagine how awful it would be to experience
serious conflict with someone you could never walk away from.
Most people can easily understand why someone who is enslaved or
imprisoned would risk death to escape and experience freedom. For Ladan
and Laleh, their state was very much the same thing. They desperately
wanted to escape what was for them an untenable situation. The hope of
freedom was worth any risk. As I began to understand that, I also began
to feel better about embarking on such a potentially dangerous course of
Meeting these young women-and hearing the determination in their voices,
recognizing the desperation in their lives, and seeing the hope and
resolve in their eyes-sealed the deal for me. By the time our
conversation began to wind down, I was thinking, Let's get these
women separated so they can get on with their lives!
Even though I had assured Ladan and Laleh during our interview that I
cared about their well-being, before leaving their apartment, I looked
them both in the eyes once again and acknowledged that we were about to
embark on a long, arduous, and extremely dangerous operation. That while
the odds were not good and I could not promise them a successful
outcome, I did feel optimistic enough to think there was reason to hope.
I said, "There are a lot of things in life beyond our human ability,
knowledge, and control. But there is nothing beyond God."
As I stood and shook hands with them and bid them good-bye-until I saw
them in the operating room the next morning-I told Ladan and Laleh what
I tell all of my patients during my final pre-op exams: "I've never
known a case yet where worry helped. So I'm going to say my prayers
tonight before I go to sleep. I hope you'll do the same. I believe if we
do that, we'll all have less to worry about tomorrow."
As I turned and walked out of that room, I believed beyond a shadow of
any doubt that both Ladan and Laleh Bijani truly understood what they
faced. They were approaching this dangerous and unprecedented surgery
with much the same spirit of determination they had shown in tackling so
many challenges in their lives.
Most of all, they had convinced me that they understood the risks.
Excerpted from "Take the Risk: Learning to Identify, Choose, and Live with Acceptable Risk" by Ben Carson M.D.. Copyright © 2008 by Ben Carson M.D.. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher. Excerpts are provided solely for the personal use of visitors to this web site.