By Jeyling Chou
BRUIN SCIENCE SENIOR STAFF
jchou@media.ucla.edu
Midwives refused to touch Chang and Eng Bunker on the day they
were born in 1811, horrified that the twin brothers were joined at
the abdomen by a single band of flesh.
Chang and Eng would have been easily separated by modern
surgical techniques, but the five-inch band connected the brothers
until the day Chang awoke to find Eng dead beside him in 1874.
The lives of conjoined twins have remained in the public eye
since the first documented case in A.D. 945. In the early 1900s,
twins were showcased in traveling circus freak shows, Broadway
plays and films.
Their intrigue as a rare form of twinning has been renewed by
recent cases.
Thousands in Iran and around the world mourned the recent deaths
of Laleh and Ladan Bijani, who died in an attempted surgical
separation this month. Last August, UCLA successfully separated
Guatemalan twins Maria Teresa and Maria de Jesus Quiej Alvarez, who
were formerly conjoined at the head.
Conjoined twins occur in one out of every 100,000 births and are
always of the same sex; they are three times more likely to be
female than male.
Identical twins are formed when a single egg in the womb splits
to develop into two separate fetuses. The division can be
incomplete if it occurs 12 or more days after conception, resulting
in two embryos with shared body parts.
“Our daughter found out she was pregnant with conjoined
twins, and we went through all the frustrations and the fears and
the tears ““ everything that goes with knowing you’re
going to have conjoined twins,” said Will Degeraty, founder
and director of Conjoined Twins International, a support group
based in Prescott, Ariz. for families with conjoined twins and the
twins themselves.
Founded in 1996, CTI is a resource for families with conjoined
twins through medical referrals to an international staff of
doctors who have delivered, separated or treated conjoined
twins.
The organization currently has 140 families from around the
world on its roster.
“Not all of those are survivors. A lot of those are
parents with children who have died,” Degeraty said.
“We generally try to put families together that have been
through similar situations,” he added.
There have been 1,262 documented conjoined twin cases and 240
attempts at surgical separation, said Jonathan K. Mraskas,
professor, chief of pediatrics newnatal-prenatal medicine and
associate clinical director of the neonatal intensive care unit of
Loyola University Medical Center in Chicago.
In most cases, neither twin’s ability to move or function
is impeded by the conjoining, but the parents may choose separation
for reasons that adhere to social standards.
“Normalization surgeries are aimed typically at
psychosocial function, not at physical function,” Dreger
said.
According to Dreger, the social stigma that has confronted
conjoined twins has often been greater than any physical
disadvantages.
Lori and Reba Schappell, the oldest pair of twins conjoined at
the head in the United States, were institutionalized in 1961 for
the first 24 years of their lives despite perfectly normal mental
capabilities.
Multiple employers turned Lori down after discovering that she
was conjoined to her sister.
“There’s no question that people with unusual
anatomy suffer from employee discrimination,” Dreger
said.
Because of the way they are conjoined, however, the Schappell
twins cannot be separated.
Depending on the area of the body where conjoining occurs,
extremely risky surgeries have resulted in an expanse of ethical
questions that arise with each considered separation.
“Maybe they can function well as they are,” said
Nancy Segal, professor of psychology at California State University
Fullerton and author of a book on conjoined twins.
“Maybe if you separate them, each twin would lose organs.
Their life might be worse apart than together.”
Although conjoined twins often undergo separation surgery, Ladan
and Laleh Bijani were the only pair of twins ever recorded as
having desired such a surgery.
“(Doctors) consider the question of beneficence ““
what would be in the best interest of the child,” said Alice
Dreger, associate professor of science and technology studies in
the Lymon Briggs School at Michigan State University.
“But they’re not thinking of what these people would
choose for themselves.”
Since separation surgery has the highest chance for success when
conducted during infancy, the parents or physicians often make the
decision before the twins are able to speak for themselves.
“Doing (the separation) in infancy is the best thing to do
because it’s before identity development happens. As (twins)
get older, they come to see themselves as normal and can’t
understand why they’re being normalized,” Dreger
said.
In July 1993, doctors at the Children’s Hospital in
Philadelphia faced a serious dilemma with seven-week old Amy and
Angela Lakeburg who were conjoined at the chest, sharing a liver
and a malformed six-chambered heart.
It was decided that the twins would be separated ““
sacrificing Amy in the operating room so that Angela, the stronger
twin, could live. The surgery proved unsuccessful. Angela never
left the intensive care unit and died 10 months later.
The increased awareness of conjoined twins may lead to an
improvement in how they are viewed in society.
More than 200 years distant from Chang and Eng Bunker,
2-year-olds Ahmed and Mohamed Ibrahim, Egyptian twins conjoined at
the head, are currently undergoing tissue expanding procedure
before an upcoming separation surgery in the Children’s
Medical Center of Dallas.
“Unlike other people born with unusual anatomies,
(conjoined twins) typically look at themselves as normal and they
accept their bodies as perfectly OK,” Dreger said.