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Working with two shift teams, Doggett and her
nurses began OR preparations for a procedure that
would involve 40 doctors, nurses, anesthesiologists
and scrub technicians. The boys were held in place
in special “clamshell” capsules on
a custom-made operating table that would hold
the twins rigidly in place, and carefully calibrate
their position, allowing doctors to turn them
360 degrees for proper surgical angling. “When
they were measured for this original table, they
were smaller. So the feet were almost at the very
edge. They had really grown,” Doggett remembered.
“We got down to the dry run the week before,
and realized we had to make adjustments in how
we were going to approach it. But everything went
smoothly,” Doggett said. Doggett arrived
that Saturday morning at 6 a.m., tired from a
restless night and sharing her fears with other
nurses, including one of the Egyptian nurses.
“I ran into Wafaa. We both cried together,
and she said, ‘I want these boys back.’
I said I’d do my best.”
The surgery team, including Salyer and a neurosurgery
team from Children’s, was initially delayed
to work on the precise positioning of the boys’
operating table and to order up more X-rays of
Ahmed’s lungs. The careful removal of the
tissue expanders and portions of the skull preceded
the complicated blood vessel work that continued
overnight.
Doggett remembers taking a three- or four-hour
nap break before returning to the OR at 6 a.m.
Sunday. At 11:17 a.m., Mohamed and Ahmed were
separated. It was a moment that Doggett can only
describe through her tears as “stunning.”
“It was like slow motion,” said Doggett,
who had never been involved in a conjoined twin
separation. “It was stunning. It made your
whole world just stop right there.
“I can’t tell you when they were,
quote, safe,” Doggett said. “There
was never a moment where we felt we were out of
the woods, because they were such a critical case.
I think I’ve been more emotional about this
whole thing than I have ever been in my entire
life.”
At the moment of separation, the world was still
in the dark about the Ibrahim twins. Medical City
and Children’s Medical Center were sending
runners out to awaiting media to provide updates,
but no announcement had yet been made when Buckmeier
received a cell phone call and a pager alert at
church.
“I had just forgotten to turn them off,”
Buckmeier said. After reading her text message,
Buckmeier e-paged her nurses: “We have two
boys separate.”
Buckmeier’s message reached McCune and
Ruby in Philadelphia, where they were getting
ready to board a plane back home from a nursing
conference. They both screamed, danced and cried
in front of some obviously puzzled airline patrons.
“We couldn’t tell too many people,
because it hadn’t been released to the media
yet,” McCune said.
It was their little secret, and one they were
relieved to have. Otherwise, they would have to
wait until their three-hour flight landed in Dallas
before they would hear any news. “CNN didn’t
have the scoop and you guys did,” Buckmeier
joked to a nodding McCune.
Back in Dallas, Mohamed and Ahmed were under
an induced coma that would keep them unconscious
until the next Wednesday. A month after the surgery,
they were transferred back to NTHC at Medical
City. The day they returned, the nurses said it
was like old times.
“Seeing them return, you wondered if they
remembered us,” Buckmeier said, “but
right away, they did.”
Little giant steps
More than four months after surgery, some of
the twins’ time with the nurses is being
lost to others. Ahmed and Mohamed spend four hours
a day with physical therapists.
Their days are sometimes partially devoted to
outside visitors eager to see their progress,
like Texas first lady Anita Perry (a registered
nurse) and the Dallas Cowboys cheerleaders. The
twins were filmed recently for “The Oprah
Winfrey Show” and local television news
programs, playing in their therapy gym filled
with tons of plastic and rubber toys. The Feb.
23 broadcast of “Good Morning America”
featured the boys, their parents and Salyer.
Both get out of their room to roam the hallways
more frequently with their parents or their sponsors
with the World Craniofacial Foundation (which
is paying for the family’s medical expenses).
The road ahead for the boys is still a long one,
including the major reconstruction surgery scheduled
in April. So the boys still get excited to see
Greenwood and Ruby, to show off their fast-developing
motor skills and all those new words—in
both English and Arabic.
While the Ibrahim twins are learning, the nurses
say they also gain something new each day. They
are getting closer to the Ibrahim family, as when
the twins’ mother was eager to share her
Egyptian recipes with Ruby. The pre-separation
trepidation from when Mohamed and Ahmed were wheeled
into surgery—and into history—are
fading.
“When they came back from surgery, Stacey
was taking care of Ahmed 85 and Mohamed was crying
by himself,” McCune said. “For the
first time in a year and a half, I was able to
pick him up and rock him, because before it always
took two of us to carry the twins anywhere.
“He just laid his head on my shoulder,
and I cried. It was the sweetest moment I had
had in a long time.”
| Twin
Tales |
|
Despite
the impression from The Guinness Book of
World Records, Chang and Eng Bunker were
not 19th- century carnival legends throughout
their 63 years.
The two conjoined brothers spent only a
few years on the 1830s travel circuit exhibiting
themselves to crowds and medical societies.
Linked at the sternum since their 1811 birth
in Siam (now Thailand), they grew tired
of touring and settled down to three decades
of domestic life in the farmlands of Wilkes
County, N.C. They had wives and raised 21
children.
Financial pressures pushed the Bunker twins
back into the spotlight with the Barnum
& Bailey Circus in their later years,
and their lengthy period of normalcy became
just another fascinating piece of the attraction.
“Siamese twin” became part of
the folklore—and the medical lexicon—of
the day.
That term still can be found in medical
journals and reports, although the phrase
is generally shunned for its racial undertones
and “freak show” connotation.
In some opinions, it also deflects the gravity
of an extremely rare, grave condition.
Most conjoined twins (60 percent) who are
conceived are stillborn. Three out of four
surviving pairs, representing only one in
every 100,000 live births and one in 200
twin births, die within days or months.
It is estimated that only a few hundred
viable conjoined twins are born each year
(and only a portion can survive separation
surgery). Only about a dozen adult pairs
of conjoined twins are alive today worldwide,
according to a BBC “Horizon”
documentary on conjoined twins.
History
Conjoined twins result from the same monozygotic
process that produces identical twins, the
crucial difference being that the embryo
fails to fully separate within 12 days of
conception. Once that period passes, the
twins will share one or more body parts—torsos,
limbs, organs and even heads.
There are nine categories of conjoined twins,
some of which are more common and offer
a better opportunity of separation. Estimates
are that about 73 percent of surviving conjoined
twins are joined at the mid-torso region,
and another 23 percent at the lower torso.
The remaining 4 percent are conjoined at
the head or upper-torso region.
Most of these are nonviable, and even in
the survivable craniopagus condition of
the Ibrahim twins, separation is high risk
and can easily result in brain damage. Only
35 such craniopagus operations have taken
place, according to www.Twinstuff.com.
Separation surgeries remain rare, and were
almost unheard of before the 1950s. Surgery
(or at least what passed for surgery at
that time) was contemplated for a surviving
conjoined twin in 12th-century England.
The earliest recorded separation occurred
in Germany in 1689.
Conjoined Twins International, a support
group based in Arizona, cites only 167 attempts
to surgically separate twins worldwide through
1990, the latest figures available from
the organization.
One of the leading conjoined-twin separation
units in the United States, The Children’s
Hospital of Philadelphia, has performed
just 14 such operations since 1957.
Ethics
Although advances in science permit separations
that were unthinkable just a few decades
ago, deep moral dilemmas surrounding separation
remain. Even as doctors now can separate
adult twins who have known no life apart
from their sibling, societal debates about
quality of life and viability issues that
previously needed no resolution are introduced.
The 29-year-old Bijani twins from Iran,
Laden and Laleh, died after blood loss complications
from their 52-hour surgery in Singapore
in July.
An inquest has shed light on disagreements
between physicians about whether the surgery
should have taken place—even though
the twins said they would risk death for
the opportunity to lead individual lives.
Some parents face a troubling decision on
whether to approve separation surgeries
that can save the life of only one twin—when
both face death without intervention.
Many in England still are troubled over
the controversial 2000 case of Gracie and
Rosie Attard, conjoined twins sharing a
lower abdomen and fused spine. Doctors there
determined that both girls could survive
only six months together, but Gracie had
a chance if she were separated from her
nonviable twin.
The Roman Catholic parents refused to allow
the procedure on religious grounds, forcing
a British High Court to eventually rule
against parental wishes and permit the surgery.
Rosie died during the operation. Today,
Gracie is 3 years old.
In the public interest?
The ethical issues of conjoined twins also
stretch outside the bounds of medical circles.
Public interest in the fate of the Bijani
and Ibrahim twins, and the portrayal of
the condition in the media and movies, reflect
long-standing and conflicting emotions of
empathy and discomfort.
Exploitive sideshows and movies were once
the only means of public knowledge about
conjoined twins, and the only way of earning
a living for many of the subjects. The famous
Hilton sisters of England in the 1930s turned
a neglected childhood of near-slavery in
traveling carnival shows into a celebrity
career as actresses. But Violet and Daisy
Hilton had to turn to movies like 1932’s
notorious “Freaks.” They later
appeared in an absurdly conceived 1951 drama
called “Chained For Life,” which
confronted the dilemma of punishing an innocent
woman whose conjoined twin commits murder.
Many such depictions are out of bounds today,
and most often, information about conjoined
twins is offered in scientific exhibits
(such as at the MFCtter Museum in Philadelphia)
or in human interest documentaries on the
Discovery Channel and public broadcasting.
However, popular entertainment has trained
an attentive eye toward conjoined twins
in recent months, with depictions that some
argue are dehumanizing. HBO used conjoined
twins in its controversial “Carnivale”
series about a traveling circus.
A Matt Damon comedy about conjoined twins,
“Stuck on You,” hit theaters
in December to much criticism about its
bad taste and insensitivity. Such portrayals—along
with extensive media coverage of such events
as the Ibrahim and Bijani twins surgeries—have
raised questions about whether the public’s
interest in conjoined twins is any less
salacious than during the days of Chang
and Eng Bunker.
“Maybe it seems rude at first, but
once the initial pangs of discomfort pass,
we’re hooked,” wrote Chicago
newspaper columnist Alison Neumar in October.
“As pictures and reports hit the news
outlets, suddenly everyone wants to stare,
simultaneously repulsed and mesmerized.”
by Glen Fest
|
Contact
Glen Fest at glenf@nurseweek.com.
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